Rooster Calls

Working it Out

2011-12-31T18:15:00.000-08:00

I have not jogged much in recent months, given the longer hours and seemingly endless commute of my new job, and the shorter days and busier weekends of winter. The other day, thanks to vacation, I found myself on a treadmill, and I saw all kinds of symbolism in it. Humor me.

Completely out of shape, I set the bar low, the time for a half hour, and the difficulty level at 3. Then, I began jogging in place, negotiating with myself, tired and wanting to quit as soon as I started.

This, I thought, is who I am now? When did I weaken to this pathetic degree?

I made deals with myself. First I thought, if I get to halfway, I can quit, and at least I had fifteen minutes of cardio -- that's a start, right? I stared at the timer, appreciated the psychological genius of how it switched often between counting up and counting down.

Planning to quit halfway enabled me to get to halfway and say, well, that wasn't so bad, I'll just do five more minutes, and continue in that vein until, five negotiations later, I jogged further than I had planned. I didn't set any records or anything, but I surpassed my goal.

Sometimes, parenting and coping with the additional special needs my son has overwhelms me. I feel that there is no way I'll be able to finish the course. It stretches out too far, the hills look too steep, and I just know I lack the stamina.

It helps when I can dial things back, and focus on the small increments, one lap at a time.

This school year won't kill me if I only focus on this week. This week won't kill me if I just focus on this day. I can survive the day if we just get through this chore.

But eventually I do get really bone weary. Eventually I do need a break from the treadmill. I need to stretch, to cool down, to replenish.

Remember I mentioned I was on vacation when I found myself contemplating all this, right?

Even the word vacation had felt out of my league. Felt like Publisher's Clearing House; you see the videos that show it happened to other people, but you're pretty sure it doesn't exist, and, if it does, it'll never happen to you. If I can't figure out how to drive across town to see my best pals, how could I wrangle a vacation? Aren't those things EXPENSIVE? But the need for a break was written all over me. I kept telling people I would take one, but no one was fooled - certainly not my husband. So he and his parents (world's best in-laws) called TO. They yanked me off the treadmill of workatwork-and-workathome-and-work inmysleep...workatwork-and-workathome-and-work inmysleep... and they laughed at my objections, my belief that my kids' worlds would stop spinning if I didn't keep running in place. My husband took me on a vacation, and I had nothing to say about it. His parents kept the kids. They took better care of them than we do -- made them eat broccoli and practice math, took them to see parade floats and The Muppets, improved their table manners -- and when we got home to our sleeping angels, clean house, cheerful MIL and FIL, and even all new light bulbs, I knew two things: I am very, very, very, very lucky to be loved and supported by my amazing family, and I was kidding myself if I thought I was going to make it without a break. I couldn't have made it another yard. All the warning lights were flashing wildly while I pretended not to sweat.

The world kept spinning even when the treadmill didn't. I stopped. I rested. I wept. Hey, people. I even found the time to jog. And to have epiphanies I could blog about again, in case anyone still reads here.

I don't know what the trip cost. It was cheaper than dying.

If you are running on a treadmill, here is the wisdom I offer:

Pace yourself.
Focus on small increments.
Don't always look at how far you have to go, sometimes count how far you have already traveled.
Step off sometimes, especially if anyone offers to help. If they don't offer, ask.
Rest, or you will never go as far as you need to, and you might fall off the treadmill and really hurt yourself.
Blog about it.

That's all I got, people. Now, I'm limbering up; vacation is over, and the treadmill awaits.

Seasons, Reasons, Celebrations

2011-12-23T19:07:00.000-08:00

Before I even knew I was Jewish, I can remember all kinds of Christmas guilt and anxiety. It had nothing to do with religion.

I grew up with an alcoholic father I rarely saw, who traveled for "business" most of the week, and who bought us a 40-foot camper so my mother would keep my brother and me away for the summer, but Christmas eve found us all around the tree each year, unable to figure out how to be a family. Inevitably, my brother and I bickered over ornaments, my mother complained about how hard she worked to make things "perfect", and my father smilingly slurred snide and sarcastic zingers from his corner of the sofa. My mother grew louder and my father quieter and more sour, as my brother's head nearly exploded from the pressure, until at last I wept.

My crying infuriated everyone. Once I cried, my mother blamed my father, my father blamed my brother, my brother called me a baby, and I cried more. My mother hurled something against a wall, I cleaned up the splinters, my father passed out, my brother turned up the music... Then, to bed, so we could wake up and unwrap countless presents wrapped opulently in guilt and misery.

The Christmas morning I was ten, we left on our one and only family vacation. With gifts of Arthur Ashe tennis rackets and tank tops, we headed off to Disney World, where my parents took Polaroids of us by day (wearing parkas purchased in the gift shop -- Orlando had a record cold spell and flurries) and took their screaming matches out on the town by night, while my brother and I stayed in the hotel room with a babysitter and a television that seemed inseparable. By my eleventh Christmas, my mother had left my father, my father had fled the country, and I had learned about Judaism when we moved in with my grandparents.

What on earth does this have to do with autism?

Well, it's convoluted, I admit.

I started liking Christmas a lot better after my parents split up, the inclusion of Chanukah in my life notwithstanding. I liked celebrating without the smell of alcohol, without anyone smashing things and screaming, without such fancy and expensive gifts. I started making my own community and spending time learning about my friends' traditions, making my own traditions, reclaiming the ideas of celebration and joy. I began dreaming about one day having my own family, raising children who never associated Christmas with vodka or beer, bitterness or misery, nor with religion -- children who knew they were Jewish and felt free to live, worship, celebrate, believe, and be, any way those chose, any way that made them happy. We would light candles and eat latkes, we would decorate the tree with ornaments we made ourselves. We would try, learn, love, be happy, and celebrate.

To paraphrase Sandra Cisneros, what no one tells you is that when you are a parent, you are still a child. The trick is not to let your own childishness ruin things for everyone. This is especially true if you are a parent of a child with special needs.

When it comes to Christmas, I don't want to neglect the little girl I still am inside, but I don't want to put her needs over those of my own children, who I want to put first. First, but not only.
So, it's complicated.

You can bet that Christmas has not turned out like I expected. Some years we light candles for eight nights, and some years we settle for two or three. Some years we have a tree, and some years it is just too much. Once or twice we have visited Santa. This year I managed to get out just a few Shutterfly cards. Part of this has to do with autism. It just does. It just does.

Once again, screaming has become part of my holiday traditions. I find that I have resumed my role as the one who ends up crying sometimes. And I admit there is some bitterness. Some guilt. These are not the holidays I envisioned as a child. This is not the life I envisioned. But not all of this has to do with autism. And I don't "blame" autism. We all are who we all are. We're complicated. We are real. We are a family.

And here is the thing: what I really wanted from holidays as a kid was not some picture of perfection. It is pictures of perfection --- and the insatiable desire for those illusions --- that led to the mess of my childhood. Yes, I had dreams of gingerbread houses and stringing popcorn. Yes, I had dreams of grating the potatoes and following my grandma's handwritten latke recipe, and playing dreidle and singing songs. But really all I truly wanted from my holidays was a loving family, warts and all. And so I am trying to joyfully celebrate the way the family I have today needs me to, not the way the girl I used to be might wish we could.

No latkes this year. No gelt. No tree. No gingerbread.

Warts? We got 'em. Oh, how we got 'em. But tomorrow we will gather with extended family and there will also be no vodka, no beer, no snide remarks, and no guilt. There will be autism, and maybe some (kids) screaming, possibly a moment of anxiety, but not too much. And there will be love, in abundance - the greatest gift of all. And because that means so much to me, I will try - try my best - not to look too far back or too far forward, but be right there, in the moment of celebration.

Whatever you believe or celebrate, I wish you love, peace, and all the best for a bright 2012.

It's Not You, It's Me

2011-12-16T20:15:00.001-08:00

If, hypothetically, my children had a great day, I would not tell you about it.

I don't mean to hurt your feelings. I know you more than anyone would completely deserve to hear if they, say, had a day of no fighting, and made me Hanukah presents out of construction paper and found items around the house. After all, you have put up with my kvetching for years now.

It's just, to be honest, I don't blog for you. I love you, I really do, but I blog purely for medicinal purposes -- life-saving ones. You and I know for a scientific fact that if I told you something purely fictional of course like that they cuddled and smiled and called me cute and read books and went to bed on time with no complaints, that tomorrow I'd be doomed. I don't want to be so doomed that even coming here for my one catharsis could not sustain me. That goes against everything in my survival instinct. I will understand if you feel this relationship is out of whack and don't want to put up with my madness anymore, but a girl has to do what a girl has to do.

No, even though you have seen me through my darkest hours, lovingly and unselfishly, you won't hear me ever tell you about any crazy rare days when everyone in my family felt happy and good.

But I hope we can still be friends.

Starting Stopping

2011-12-11T18:50:00.000-08:00

When I met my husband, I taught fifth grade, and he loves to recount how I never let him carry my very heavy teacher's bag for me. He also enjoys calling me his "locomotive." He says I have lived my life like a mission, and that I get a sense of control over the world by doing everything I can every chance I get.

But it's changing.

I have not yet met my son's new aide. This guy started work a couple of weeks ago, and I've already had three or four people tell me how talented he is at helping the Rooster, but I've let my husband handle that relationship. My kids take swimming lessons on Saturdays. They started about two and a half months ago, but I don't even know the name of the place. My only contribution to this endeavor involved terrifying my husband with stories of kids with autism and water danger, and sending him a list of local swimming classes; he took care of the rest. He has fought the battles with the discrimination and negligence at Roo's school more than I have. He has sat alone in the tiny blue plastic chairs at parent conferences for the very first time, putting me on speaker on his cell phone. He drops the kids off at school this year. He takes them horseback riding on the weekends.

After three years of frustrating our neighbors with our lawn, we have finally hired a gardener. Instead of volunteering for things, it's all I can do to send checks.

It's not one thing, it's everything. Even this blog. Where am I? What am I doing?

It hurts me, this falling away. In the hardest moments of it, I feel a little like I'm failing, a little like I'm dissolving, and I'm sad, worried, scared.

But my husband looked at me tonight and told me to get a grip. He didn't mean: go do more. He meant, lovingly: make peace with taking a breath. He meant, embrace stopping the madness. Don't weep about it, do it with intention. Choose to stop, don't go til you crash. He meant: it's okay to let your husband help you.

He said, "You have been holding the spinning world over your head and protecting it with your two hands while taking whippings, beatings coming at you from all sides. It makes sense your legs are tired and you need a breather." He said, "You have been working since you were 14. No one has ever said before, 'It's okay. I got this.' But honey, it's okay. I got this. Ok? I got it. And listen to me: everything is going to come back to you. Your energy. Your sense of yourself. It's going to come back. But only if you stop for a while. Stop, it's okay. I got this."

I don't exactly know how to start to stop. I don't know the rules for embracing letting go, dialing back. I have no experience at it. But I carry my husband's words around like a love letter in my back pocket, and they are giving me strength to try. To try to not try so much.

Magic

2011-12-11T18:42:00.001-08:00

I have been given strict orders not to touch this... um...er... magic. Under penalty of being sent to my room, and other black magic consequences.

You see, my son tells me that his magic kit needs to "gain strength" so he will have "more power." His buddy McCabe from after-care at school told him that the recipe for improving magical powers involves GATORADE and RUFFLES, which, as you can tell, have been carefully mixed in my baking dish, beneath Roo's magic kit. They must sit there, undisturbed, I am told, for 10 days.

I've been sitting here staring at the photo and the above paragraphs for minutes, trying to figure out a conclusion to this post. Isn't that silly?

Sort Yourself

2011-11-15T20:05:00.000-08:00

Dear World With Whom Rooster Comes in Contact,

Let's make things a lot simpler for us all. Please sort yourself into two groups. In group One, let's have those of you who have some understanding, concern, empathy, interest in, or tolerance for my son, a difficult but extremely loveable seven-year-old who has autism. Have a seat right here next to me; I'll bring you coffee, and you can rest your eyes, hang out on my sofa and skip the rest of this post.

Everybody else, those of you I will euphemistically refer to as The Other Group, please state your damage. Keep it simple. Help me understand. I'll even make it really easy, "race to the top" style, and I'll offer you multiple choice. Are you:
A. a victim of some type of abuse or condition that renders you unable to have understanding, concern, empathy, interest or tolerance for a loveable kid?
B. purely lazy? You don't want to have to deal? Not into effort?
C. mean? Yes, I am talking to you, as a matter of fact. Because I know what to do about groups A and B. I know that the members of group A just need some understanding, concern, empathy, interest and tolerance themselves, and I know that the pervasive gang in group B will come around one day when their lazy butts are on the other side of prejudice and bigotry, but you people in C? You people who just. want. someone. to. fight? Who just have to make life into one conflict after the next? I just want you to identify yourselves. Hands up, and here is your placard. I want to see you coming. So I can walk an extra ten miles out of my way to avoid you. Growing up we had a saying, "I ain't got no time for you!" You people have taken up enough minutes already. Identify yourselves, and march on -- the other way. Whichever way the Rooster's family is not marching.

We'll be headed that way, over there on that virtual sofa with cool kids who are sipping coffee and making the world better (sometimes even educating those folks in A and B even) and there is absolutely no room there for the likes of you. Consider yourself NOT INCLUDED this time, if you get my drift.

IEP and How We are Doing

2011-11-12T17:22:00.000-08:00

The way I see it:

- We had some negative experiences at Rooster's first elementary school.
- We heard that another school nearby was better.
- We entered the better school's lottery.
- We got a call: we won the lottery!
- We showed up to registration and were told, "Oh, autism? No thanks, we have enough of those kids already. Our lottery was for typical kids. Go back where you came from."
- We consulted the district, officials, attorneys, etc. and heard we had a right to enroll our son in the better school.
- We finally were allowed to enroll him the week before school started.
- We heard, "Because you enrolled him so late, his services will not start on time."
- We told them, "Without services, he will struggle."
- The aide started three weeks late, misses work regularly, and is described by the principal as inadequate.
- My husband sees children bully, taunt, tease, hit, chase, and torment my son the minute he sets foot on the yard in the morning; my son doesn't want to go to school. He says everyone calls him "Bad Rooster."
- We get called for an IEP meeting to modify the behavior plan. At the IEP meeting, we hear that our son is a bully, that he is the one calling names, striking out. No one says anything when we describe the situation he faces the minute he enters the campus, never having even spoken a single word.
- We agree our son's behavior has regressed, but we place the blame squarely on a transition from hell because of the school and the lack of supports to which the law clearly states my son is entitled.
- We all agree the district provided aide does nothing, does more harm than good, and we decide to go for a behaviorist from a non public agency.
- I have to leave the IEP meeting ahead of my husband. He decides to sign it. But strangely there is no printer available. He reads it on the laptop, he signs.
- A copy comes home. It has a whole paragraph my husband has never seen. This describes my son as a menace and a safety hazard to others. It also has the wrong name of the school on the document, rendering the whole document invalid. A new document will have to be signed. This will all go down very, very differently.
- My husband? The nicest man anyone has ever met, will ever meet? Quivering with fury. He says, "They have messed with the wrong guy." He drafts emails, gets attorney phone numbers at the ready. He says, "I will never trust those people again. I will not allow them to abuse the system or our child."

The way the school seems to see it:
Kids who have autism should go away. They bring down our test scores, our precious API, our race to the top. They are expensive. We teach reading and math -- that is how we get paid -- we don't have time or money or energy for the whole child. We told you that after we accidentally picked you for enrollment but you would not listen. We said you didn't want you but you came anyway with your whining rants about rights and laws and blah blah blah. You should go back where you came from. Please leave your box tops, raffle donation, book club order, bake sale item and $1500 annual contribution in the box on the counter on your way out.

Dark Imaginings on the Night Before Halloween

2011-10-30T16:54:00.001-07:00

Well, it's almost Halloween, and I'm feeling dark, so I'm going to get a little creepy here.

And to begin, I have to tell you something that probably will clash jarringly with your notion of me; are you prepared? It's not creepy or spooky, it's just going to be hard for you to believe, that's all. You see, sometimes I ... jog.

I jog slowly, of course, with poor form, and not all that far, but I jog when I can in this large, urban crazyzone in which I live.

And even though I jog only in the daylight and only in places I consider relatively safe, sometimes I imagine what ifs, especially as I pass those who are faster, fitter, stronger, but appear (even) less stable than I am. You know, if for some unimaginable reason, someone wanted to do me harm, I wouldn't be that hard to catch, that's all I'm saying.

So today I'm jogging (let's just use that word loosely, shall we? but I am sweating) in the park past a fellow who very well writes poetry in his spare time but for some reason gave me the sense I should allow him wide berth and no eye contact, and I'm in the Halloween mind set after passing a picnic full of goblins and aliens, and I find myself wondering the darkest what ifs. And wouldn't you know it? They lead me back to autism. *I heard you just now when you said you saw that one coming.*

It went like this:
If I disappeared during this jog, would people search for me right away, or would they assume I ran off of my own accord?
And if they put me in the news, would anyone say, "I know she'd never leave her family! She must be hurt, we have to help her!" (Because I would NEVER EVER leave my family, I only like to joke about it!) Or would they say, "Well, I know her father ran off when she was little, so maybe..."
And would my Roo miss me, miss climbing in my lap and calling me wildly unpredictable nicknames like "Mama Mineral" and "My Mama Pajama"? Or would my Roo find more peace without being drilled on his lessons, more happiness without being nagged about taking on more responsibilities, more tranquility with just his even keel, level headed, serene dad?
And if they never found me, would my husband find dealing with autism easier without also having to deal with me-dealing-with-autism?

Okay, okay, calm down. Don't send in reinforcements. It's not as dark here as all that. It's just Halloween is all, and girl has to get a little noir once in a while. I'll try to come up with a bountiful pre-Thanksgiving post next time.

Quietude

2011-10-10T21:02:00.000-07:00

I feel quiet.
What else is there to say...
when my boy struggles in all the same ways only in new places?
What else is there to say...
about ending yet another day feeling like I failed him?
What else is there to say...
about all the mountains still to climb?
By now you have heard it all before...
school struggles, language hurdles, physical challenges
By now you have heard it all before...
bullies and judgment and exclusion.
I feel a lonely quiet,
and there is nothing left to say
that you haven't heard before --
just words to fill this void that quietly aches.
You can't hear the quiet, but I can feel it.

Happy New Year

2011-09-29T20:36:00.000-07:00

So, how are we these days?

You know, it depends when you catch me.

If you ask me in a good moment, I will tell you:

My boy's passionate love affair with books has reached a much more intimate level now that he can read chapter books by himself, and I get too caught up in the romance of that and spend over my budget at Amazon.com. (We need to reacquaint ourselves with the library very soon.) Peaches loves learning in kindergarten and kicks math's butt. My husband remains amazingly creative, and I am getting the hang of my new job.

If you ask me in a rough moment, I will tell you:
Rooster is experiencing bully problems, and they scare me, unless I read the news, and then they terrify me. When I see Peaches at age five doing twice as much math with fives times as much accuracy as her seven year old brother, it is all I can do to run in my bed room, close the door, and repeat 1000 times, "Thou must not compare, thou must not compare, thou must not compare...." and, "he does things in his own time, in his own time, in his own time." (Can you even COUNT the oblique math references in that sentence, I ask you?!) My poor husband has zero time to work on his creative passions, and I fear I am partly to blame, as my new work has shifted some responsibilities his way.

I am trying hard to stay in the good moments. It's my resolution for the new year.

Following Rooster and His Mom Through All Kinds of Weirdness

2011-09-24T18:10:00.001-07:00

Dear Book Club,

I feel all kinds of weird about writing to you via this blog post right now.

I feel all kinds of weird. Period.

And I'm questioning if I should write to you like this. I hope you will indulge me in my weirdness, as you so often do.

But writing this blog is how I deal with autism, and dealing with autism is a big, complicated, messy, difficult to explain endeavor, as I think you can imagine from reading our upcoming selection, Following Ezra. I think the author might agree that, when something helps you deal with autism, you just do it, even if it's weird.

I don't know how much it shows, but I struggle over talking about autism with our group; I never want it to invade the single social experience I grant myself as part of my regular life. I never want my struggle to bring the group down, or elicit sympathy, or take any of us away from our escape into books. Book club or elsewhere, I never want it to see like autism is a tragedy for my family, but I never want want to pretend we are typical, either.

I know I already told you this but I can't express fully how joining your group meant -- means -- more to me than you can know, and that is because of autism. It feels to me like all the other places I frequent are autism communities, where my family can be one of the group, and I can swap parenting wisdom and resources with others in the same boat as I am as Rooster's mom. Book club lets me just be who I have always been all my life -- a friend, a talker, and a reader.

And now that we are reading Following Ezra, I don't know another word to describe what it feels like other than weird, which I admit is not such a useful word. So I'm trying to draw a clearer picture right here; how am I doing? No? Not so much?

I guess what I'm trying to convey is that I can't imagine how to talk about Following Ezra, a book about autism and parenting, as the person I've always been all my life, because autism has changed my life, and changed me, so much that in some situations I find it hard to reconcile my before-autism and autism-immersed selves.

At only halfway through reading Following Ezra, the anxiety of trying to imagine how I would talk about this deeply personal story that hits so intensely close to home had me feeling all. kinds. of. weird.

I read, and I pictured the story, and I pictured our next meeting, and I paced a little, and I put the book down. I picked the book up and rode the exercycle and realized my legs were whirring and I could not concentrate and I put the book down and thought about our meeting, and I thought about Ezra, and his life with autism, and I thought about Rooster. And I picked the book up, and I thought about the author, the narrator, the parent of this special boy, and I thought about my husband, then about Ezra's mom, then about me, and finally the only way I could deal with the weird feelings zinging about, the PTSD I am tempted to call it, was to pick up this laptop and write, and what comes out is this letter, my attempt at self-soothing.

My boy, Rooster, is not Ezra, and I am not Ezra's dad, Tom, but this book feels so close to me, my life, my family, my experience, our autism journey, that I find it more imaginable to step inside the pages and arrive at the Los Angeles zoo with Ezra and Tom than I can imagine even something as typical as our next gathering.

I keep hearing in my mind how I have talked about other books in our meetings, both fiction and, like Following Ezra, memoir or nonfiction. I remember with previous books commenting on voices I found interesting or flat, a mother who I feel embarrassed now to say grated a bit on my nerves from how a big a deal she made of some things. Sure I could criticize -- those characters and writers remained strangers.

But how will I talk about these people who feel like my family? That will feel -- well, weird. I am afraid that I hold this book too precious to dissect it without feeling like I am betraying people I have never met but count among a sacred community precious to me. I can't "like" or "dislike" this book, because it is somehow my life; not a story, but testimony.

So I admit I thought about not coming to this meeting of our book club. But I don't want to miss seeing you -- I don't want to miss the event I wait for all month, your good company, the beauty of your community -- and not going likely would just carry over the weirdness until the next time we get together.

So the only way I know to avoid the weirdness of how I might feel when I try to talk about Following Ezra is to plan for the possibility that I might not be able to talk about it when me meet. Though it would be unlike me, it's possible I might only be able to listen! It's not that I don't want to talk with all of you, it's just that I feel overwhelmed at the thought of my emotions in this situation. If you want to know what I think about Following Ezra, I am putting some of my ideas in this post, where I can say it in my best way, in my own time, with the ability to hit backspace and delete as I stumble along.

Following Ezra is an important book about raising a child who has autism. Not any child, not all children, not the full spectrum of kids, but one boy named Ezra. In my opinion, it does not presume to be more, to get political or to speak for anyone, though in many passages I find it telling my own feelings and experiences. It purely resonates. The book is full of simplicity and love, and I treasure that about it.

My favorite part of the book:

When Ezra says, "You are proud of me." My solar plexus ached, and that is all I can say about that.

Parts of the book that felt like I might have written them myself:

p. 3 "a personal journey, beginning in darkness, fascination, love, and ultimately, a sense of awe for our unique, exceptional son."

p. 19 "He's gone."

"p. 24 "One evening, I try to put Ezra to bed one hundred times in a row. And that is just the beginning. The trouble is, I'm following instructions that were written for another kid."

p. 34 "I once understood that having children meant sacrificing some sense of control, but more and more I find myself in situations like the one at the hair salon that seem completely out hand, and beyond my ability to manage."

p. 60-61 "the dismal sense that we might never get this right -- that raising a child with no intuitive social instinct will be treacherous, a minefield with unseen disasters lurking everywhere ... Uncensored, he obsessively points out and comments not just on overweight people, but a laundry list of oddities."

p. 152 "At the movies, he can take in dialogue without anyone expecting him to respond -- and he can play a DVD over and over again until he understands the words and keep listening until he commits the dialogue to memory. That explains why for several years of his childhood it's almost impossible to engage Ezra in dialogue, but he will routinely spout movie lines..."

The part least like my experience, which I found particularly fascinating:

Ezra's amazing memory. The rooster, so far, has shown no remarkable savant skills like that.

When I cried:

The whole bar mitzvah made me cry, because it is so happy.
The hardest parts of the story made me nod my head, and several times I covered in gooseflesh, but I didn't cry until the end of the book as Ezra flourished through the experience of his bar mitzvah. I cried at the beauty, the love, the joy, the community, and I cried because I know that the end of any story like this is an arbitrary thing in a way; there are no real ends, but constantly overlapping spectrums of endings and beginnings in a complicated journey.

What I think of this book: It should be required reading for most of society. The numbers of people affected by autism are vast, and this book offers a testimony that opens people's eyes, whether they are teachers or clerks in a store that sell Homer Simpson dolls, therapists or neighbors, members of a congregation or barbers who encounter people with special needs. Anyone who doesn't think they personally know someone deeply impacted by autism probably is not paying much attention.

Is it a good book? There is simply no way for me to answer that without bias, anymore than I would feel comfortable having my own children in my class and grading their work. Following Ezra wasn't a book club assignment, it was an intimate opportunity for reflection on what motherhood means to me. I didn't read it like a book, I went through it like therapy. And I'm glad I did -- thank you for choosing Following Ezra, because I never would have, and now I am so happy to own a copy.

And in case I have not said it, thank you for letting me join book club. I am so grateful for what it adds to my life.

Wheeew. I am glad I got that all down on my blog. Now I can look forward to our meeting once again. I am feeling fewer kinds of weird now. Maybe just my usual amount.

Worry Beads

2011-09-15T21:23:00.000-07:00

The ever-inspiring Jess wrote a lovely poem, I could not resist taking it as a meme. You know what they say about imitation? Jess, I hope you feel flattered -- your words resonated deeply for me.

I worry that that, with her, we overcompensate,
and I worry that we undercompensate;
scrutinizing her too closely,
or overlooking her too often.
I worry when she plays the role of mother,
and when she uses babytalk;
that she resents her brother for being different from her friends,
that she doesn’t understand that he is different;
that maybe she is also different from her friends,
and that maybe she is just the same.
(I worry that his challenges are genetic,
And I worry that I caused them...
That we will never know,
and that we might find out.)
I worry through the sad days,
but, sadder still,, I worry through the happy ones.
I worry about all this too much worry...

Monday, Monday

2011-09-12T19:47:00.000-07:00

Rooster's Day:

1. It's the fourth day of school and so far the aide his is guaranteed by his IEP has not appeared yet.

2. His after school aide could not come today so he did not do his homework until he got home with us at 6:30 and he was TIRED.

3. His principal called to let us know that they are reorganizing second grade. Tomorrow he will have a new teacher. Not the wonderful Mrs. Y who sent us the sweet and warm email, to whom I sent a gift card to Baskin Robbins because she said ice cream is her favorite thing; no, he will not have Mrs. Y, who has many years of teaching experience and a great profile on the web site. No, the principal didn't care that Roo had three first grade teachers at his OLD school, because I am quite sure she wishes we had stayed there. Remember, she was forced to take our boy, after rejecting "another kid with autism."

4. He told us that in the bathroom during after school care two boys teased him. One pushed his face into the wall, while the other threw paper towels at him. A third boy stood there with a cell phone, watching.

Peaches' Day:

Peaches has had remarkably poor behavior at her new after school program. When I picked her up today, I asked the teacher, "How was today?" He shook his head. "Well," he said, "Friday was good. I hope your husband told you I said that when he picked her up Friday. Today, though, she got in a full-fledged brawl, pulling hair and rolling around on the floor."

My Day:

I'm posting an ad for babysitters. See above.

Your day?

Comments encouraged.

And They're Off

2011-09-07T20:07:00.000-07:00

"How was the first day of school?"
A Top Ten List from Rooster
(numbering system, entirely his; enumerated on the endless drive home)

"ONE: Terrible! I did NOT like having an aide after school. I told daddy I do not want her to come anymore and he did not listen to me. And I hate it!
TWO: She came and I DID NOT WANT HER TO and I AM SO MAD.
THREE: And I DON'T want her to come back EVER AGAIN. I don't want to see her FACE!
FOUR: And I DON'T want her help with my homework!!!! I want her to stop it!
FIVE: She came anyway today and I did NOT like that! And I'm going to put daddy on a consequence for that! It's not right!
SIX: And I never want to see her again! I'm ALL DONE.
SEVEN: She just showed up and I told daddy I DO. NOT. NEED HER!!!!GRRRRR! I'm ANGRY.
SEVEN: Yeah, seven. She better not come back tomorrow. DON'T SAY SHE IS. She is NOT!!!
NINE: I told daddy I would be good and I was good and now I DO NOT HAVE TO HAVE HER and that is what I SAID but she came anyway.
TEN: So I DON'T WANT TO HAVE AN AIDE ANYMORE BECAUSE IT'S TERRIBLE! ARE YOU LISTENING TO ME? BECAUSE I AM SO MAD, MOMMY!!!!!!!!!!"

Well. That was a fun day. I drove for about six months around Los Angeles in a billion degrees to rush my grateful children to their new schools and get to my new job and then reverse the whole deal, to be greeted so cheerfully by my oldest child, then race with him as the tears and other lovely liquids flew to go get his sister -- the last to be picked up (mother of the year award to me) -- and find out from the overly friendly after care guy that she's doing great except for that wandering off and disappearing stuff, oh and a little drama among the girls, but no worries. Yes, a runon sentence. Followed by a fragment.

Lovely first day we had in these parts, people, just lovely, and since the aide WILL be returning to after care, AND he doesn't know he also will have a classroom aide tomorrow (not sure why she didn't show up today as she was supposed to), and since everything never gets easier, I will grammarize any way I please, including double negatives, thankyouverymuch. Let the new year of my whinefest commence freestyle, baby!

For those who insist on bright sidedness, I can offer you this:
We adore the aide. No matter the Rooster's newfound quest for independence, he has always deeply adored her, because she rocks the spectrum. She comes early sometimes, stays late often, helps him do his homework and learn such essentials as Capture the Flag and how to not freak out on a school bus ride to a field trip, and did after school as well as summer camp for two years. She said my boy had a great day until I arrived, not just in after care but in class, as reported by his teacher. (sigh)

AND, since I'm on a roll, all cheerful and such, the after care director at the new school turns out to be the same guy who was the Rooster's camp director the past two summers, and we love him.

And really I saved the best for last, in case you somehow made it this far and you needed a reward.
We sent a Rooster Manual in to the new teacher today, inspired by the ultra fabulous and supremely wise Redhead Momma, and this is what the new teacher wrote back:

"Hello!
Thank you so much for the booklet to introduce Rooster to me. It was very helpful for me to know a little more about your wonderful little boy. I will keep in mind the information you have shared.
I am looking forward to a great year.
Mrs. Y"

Once I got over the shock and the weepy joyful tears, and the second rock of shock and jubilation and heart skips, I began to worry. You know, because last year we lost the first wonderful teacher the boy had by Halloween and the second before winter vacation, and the third teacher was good but lost his job by June due to budgets. And also because, well, that's how I roll.
Please send Mrs. Y wishes for good health, job security, but no lottery winning until next year.
A little birdie told me she has a fondness for ice cream so I'm sending her Baskin-Robbins certificates tomorrow.

Tomorrow. I can hardly stand the thought.

Twas the Night Before School...

2011-09-06T20:06:00.000-07:00

Look, I know I don't deserve a favor.
I'm hit or miss around these parts, and I'm lurking everywhere, rarely saying boo.
So don't do me a favor.
But do one for Rooster? He's been working harder than words can tell, and tomorrow is his first day of school, which would be a big enough day already, but this is at the school that didn't want us.
He doesn't know we had to fight over this school. He doesn't know that he got in through a lottery, then got refused because they "already have a lot of kids with autism." He doesn't know his father took this to the top, that the district overruled the principal. He doesn't know that we have no idea, no idea in the world, if we have made the right choice to send him there. He doesn't know it's a public school with a good reputation for helping kids on the spectrum, or that, sadly, this reputation has come to feel like a burden to the administration that they would rather shed. He doesn't know how close I came to sending him back to the more mediocre school where he had some very painful run-ins with a few bad teachers and hateful parents, just because at the end of the year a few people reached out to us there with kind words of encouragement and support, and we've been starved for that. He doesn't know about the spreadsheet of pros and cons, the dozens of schools we've visited, the stacks of applications we completed. I hope he doesn't know I'm scared.
Please, send Rooster good vibes for tomorrow, on his first day of second grade.
I have been, and will continue, sending good vibes for all the kiddos in the blogosphere as we face the uncertainty and anxiety that come our way each fall.
Here is to a happy 2011-12.

Trying Not to Brag

2011-08-23T20:36:00.000-07:00

Okay, I never like to witness bragging, and I surely don't like to participate in it myself. But we proud mamas have to celebrate, and special needs parents especially will appreciate some of these accomplishments, I think. Can I get a, "Go, Rooster"?!

1. My boy correctly used three different temporal phrases lately. He said:

"Remember, a long time ago, when..." (And he didn't mean five minutes ago!) (Go, Rooster!)
"Do I have to go to camp tomorrow?" (Yes, in fact, he did have to go to camp!) (Go, Rooster!)
"Yesterday you said I could..." (And so he could!) (Go, Rooster!)

2. Our summer camp aide is out. We let Roo go to camp for a few days without her. He actually said, "I don't want to have an aide anymore. Can I try to do a good job without her, and then maybe you can say I don't need an aide anymore?" We are proud of him for wanting to take that big step. Doesn't mean we think he's ready to give her up for good, but we like to see his growing sense of independence. (Go, Rooster!)

3. Guess who can sort of almost hopscotch a little?! (Go, Rooster!)

Please feel free to share your own good news in the comments. And don't expect all this crazy good stuff here all the time, people. Next post? A return to our regularly scheduled kvetch...

The Tao of Roo

2011-08-22T21:40:00.000-07:00

What does it mean to have autism?

What does it mean to have a child with autism?

By now, you might expect me to have some insights. Not only have I been thinking about these questions as they pertain to those of us here at Casa del Rooster for the past five years, but I have cultivated a community of people with autism and their families, and many have been grateful enough to share their own insights with me.

And still, I have no great understanding about the meaning of autism.

Then again, I have no great insight into what it means to be one particular race, or religion, or profession. I only know what it means to wake, and work, and walk, through this life that is mine, and to see each event, each day, each person, as I see it, through the filters of my own feelings and the lens of my life experiences.

There is no one autism. There IS only one Rooster. He is my little boy, seven years old, impossibly cute, and I love him. I do not know why he has autism, but every maternal instinct I have tells me he was born roostery, that he has always been who he is, that autism has been part of his package since day one. I can't define his autism for you, and it makes me uncomfortable to categorize people by their "functioning" level, like they are competing appliances. But I can tell you this: people who do have a singular image in their mind of what autism is often find my boy surprising. They often don't know what to make of him or of many of his friends or of my friends who are "on the spectrum."

And to be honest, while I find the word spectrum somewhat satisfying in its representation of infinite variety, what exactly is up with the singularity behind "the"? I mean, I find myself saying, "Rooster is on the spectrum" and thinking: Well, who isn't? When I really think about it, it stops making sense. I buy into the notion that there is a continuum to human sexuality, so I believe all people are somewhere on that continuum because there are no asexual people. When I say we all have special needs and fit into a spectrum of personalities and behaviors, that's not me trying to make my boy sound more typical, that's me confessing I have no idea what typical is, and owning that I'm certainly not it, even though I don't have autism.

Very soon, a new school year will begin. With it will come eighty-six gajillion opportunities to discuss with teachers, parents, kids, and strangers that my son has autism. They will look to me to help them make sense of it. Sadly, I imagine that I will be of very little use in that department. But I will tell about my boy. I will tell them he is seven, we call him the Rooster, and he's good and some things, great at some things, and challenged by some other things. When he struggles, we like to help him find ways to use his strengths as leverage for success. When he feels upset or sensitive, we model coping mechanisms and make sure he knows he is safe and loved. When he makes poor choices, we try to help him learn for the next time. When he does well, we celebrate a lot. Maybe telling people all that doesn't help them understand autism on any deeper level. But my son is not autism.

Backpack Essentials

2011-08-12T20:28:00.000-07:00

I remember finding a closet to duck in so I could talk on the phone. The inclusion specialist had called to talk to me about the Rooster's difficulties in school. He seemed to have some understanding about phonics, she thought, but she could glean no evidence of number sense. He had multiple needs, fragmentary attention, and precious little time for services. What did I want her to prioritize?

Deeply grateful for her interest, efforts, time and talents, I said, "Here is what my gut tells me. He needs the math support more. But if you can teach him to read, I think he will read to learn. He came out of the womb loving books. I say you focus on reading."

I remember dialing my husband next, whispering, a tear in my throat. "Honey? It's me. Do YOU think he will learn to read? Do you think he can?" We had to wait and hope, but my intuition told me a boy who loved stories as much as mine would persevere.

I remember taking him to the ed therapist who took one look at his deplorable handwriting and wanted to work on writing and reading. We have one of the best ed therapists you can find for kids on the spectrum - she just finished her Ph.D. and she used to be a behaviorist; she is charming and tenacious and can tame wild beasts, plus she has amazing toys and the most robust sticker collection I've ever seen. "I know you know more about this stuff than I do," I told her. "But this kids has no number sense. Zero. Nothing. His amazing inclusion specialist isn't there any more and no one at school is making any headway with our boy and math. Do the math. Help him gain number sense. Besides, he already loves to read, and I can help him with all the language issues. You concentrate on numbers."

I have no illusions that school will be easy for my son. At seven, he still has the number sense of a kid half his age. But the ed therapist is moving the needle. We see progress. And he's learning to read well enough that it will not be long until he's reading to learn. As I type this, he's pretending he has gone to bed, but I see the light under the door and I know he's cuddled up with a book about a little boy whose mom is president.

I have never been an expert on autism, but so far my gut instincts seem to know how to help my Rooster.

You think I'm talking to you? No, this is the pep talk I give myself as the weather cools a tad and people begin to talk about QBs and new lunch boxes. I feel fall coming, and if I didn't give myself this pep talk right now, anxiety might be the next feeling to dawn.

When September comes, I hope all you special needs parents out there will join me in listening to our instincts. Gut instincts and hope -- my back to school essentials.

Sitting Out

2011-08-11T19:53:00.000-07:00

Even in the toughest of economies, I have often been surprised that people are willing to babysit my children. As my husband and I return home, dread begins to pool in my belly, and I cringe as I strain to ask, "How were they?" It stuns me each time our gifted sitters tell me they had a fine time, and sometimes my shock compels me to want to overpay them. Once in a while I've had sitters tell me my kids went to bed early, after making a picture, playing a game, listening to a story and brushing their teeth without any fuss, and I've wondered if I returned to the right house. I've suspected some of my sitters of sorcery or hypnosis, and I have been humbled in the face of their superior child charming strategies.

Don't get me wrong: I have worshiped my babies since before the first time I kissed the top of their funny little heads, and I Mama Bear with the best of 'em. But if I am totally honest with you (and I am compulsively honest) my children usually seem to me like the kind of kids that, if they weren't my own, would cause me to suspect inadequate parenting. From where I'm sitting, as the parent in question who works day and night to try to do what is best for our family, I tend to want to blame genetics a little higher above me in my family tree for my kids being willful, wild, and impulsive, but I would add that autism probably deserves some credit as well. My kids are not perfectly behaved with ANYONE, but they sometimes can be cute and charming with pretty young sitters they don't see that often, or they can be holy terrors for those very same sitters who somehow love them regardless.

That is all a very long introduction to today's headline. We just had our first sitter quit on us. It shocks me that it has taken this long. Truthfully, I would not want to babysit my children! And yet I didn't take it all that well. In fact I'm still not taking it all that well; thank goodness for blogging so I can get it out of my system.

See, we don't usually get sitters so we can have fun. (I THINK I remember fun.) Unless it's our anniversary, a date night is rarely involved. But sometimes we both actually need to go to work, and yet also take the kids somewhere else at the same time. So this week, I arranged for one of the sitters we have used before to drive the kids to Rooster's ed therapy, then get them to camp. For the bargain shuttle rate of $55 thank you very much. Plus twice as much for the therapy, of course. But we could at least go to work on time. At the end of the day, when my husband picked the kids up from camp, the camp staff members sought him out. They wanted him to know that they observed my children behaving uncharacteristically aggressive with one another as they entered the campus, with Peach scratching and hitting her brother, and even leaving marks from her finger nails on his neck as they both screamed at one another. As they watched in shock (my kids have had no problems at camp that I know of), my disgusted sitter marched off, leaving the camp counselors to regain control.

I expected to hear from the sitter, but I didn't, so today I emailed her. I said I heard my kids gave her a tough time and I wanted to know what happened.

She wrote back and told me that the Rooster is not the problem, that he follows her rules and usually makes good choices, but she doesn't want to babysit for us anymore. She doesn't want to endure Peaches' disrespectful and rude behavior, and she doesn't want to be responsible if Peaches hurts her brother. I wrote back and said that it's fine if she doesn't want to babysit in the future, but yesterday she already WAS responsible for my children and all reports indicate she simply walked away. And with that, friends, we are down one babysitter.

Believe me, I deeply understand the urge to turn and walk away when my kids get like that. I have felt it myself many times. But I hired this sitter because she had some experience with special needs kids and she is getting her teaching credential. Before she worked for us, I invited her over to observe them, and I gave her FULL DISCLOSURE. Sure, we get just as fed up with Peaches, but in this case, what about my boy? What about keeping him safe? And she thinks after a couple of hours with them once every few months that SHE feels overwhelmed? Really?

And why did she not contact me, but wait to cancel our next babysitting appointment (in two weeks, in case you were interested in filling in?) when I asked her what happened? Is that her plan when she has her own classroom? Or her own kid?

We used this sitter when our other gifted and amazing sitters were not available, and so luckily we still have them (J, J, A and M, for instance) to call upon in the future. It isn't losing a sitter that has me down. It's just -- well -- losing a sitter does have me down. You know what I mean?

Forget the Mainstream Media

2011-08-09T21:18:00.000-07:00

Sick of bad news? Me too. So I'm taking a different angle.

Lately, I've noticed my seven-year-old Rooster hitting the kind of milestones you might not be able to appreciate fully unless you love a child with special needs. So, I bring these jewels to you, hoping to find an audience who will understand the unabated joy in some of these less-than-typical milestones. Give us a shout out, will ya'?

- While out of town for a reunion, Roo tells me, "I miss my Iron Man costume. Where is it? I have not seen it. It's LOST..." I say, as I often do, that it's not lost, it's just not here with us. It's at home. Then, he floors me. "What part of the house is it in? Maybe we can find it later."

- While visiting with his infant cousins, he patted them on their heads and told them they were beautiful. Then, he looked at his toddler cousin whose hair has grown long and lighter than it used to be. "Do you remember when her hair was dark, mommy? I miss her dark hair."

- A few times a week I ask my little guy how much two and two make. Almost every time he counts on his fingers. This has gone on for about 14 months or so. Last week I asked, and he kept his hands in his lap. "Still four!" He beamed at me.

- My boy started to read in first grade, but about 20 times slower than his teacher would like. He. Sounds. Things. Out. At. His. Own. Roostery. Pace. An "I Can Read" Book at Level 1 could take all night. In the past few weeks, he's sprinting along at a new pace. And forget just sounding things out, he read "laughed" and "peace" without pause. He read about 6 books before bed and still went to sleep at a reasonable hour.

- Monkey bars represent an enormous obstacle to my low-tone boy, but he made it across three rungs the other day for the very first time!

Maybe only some of these make any sense to you, so let me just say my boy is showing signs of developing temporal understanding, better abstract reasoning, more ability to plan, more interest in others, improved strength, and improved academic skills. We feel like his most recent eye surgery has helped his vision and his visual perception. And he's getting cuter all the time, reaching a level of almost impossible cuteness.

So isn't that awesome? Much better headlines than you are going to find elsewhere this week, if you ask me.

Lottery Winnings and Losings

2011-07-24T19:59:00.000-07:00

In previous posts, I mentioned a situation we have been dealing with regarding school placement, and this weekend that drama unfolded in a way that leaves us facing another decision.

Maybe you have some wisdom that might help? We welcome all thoughtful and supportive insights.

Here is the basic breakdown as I see it of a very complicated situation.

In March, we put the Rooster's name on the Open Enrollment list at a school I'll call The W that we heard is more "autism friendly" than the school he attended in kindergarten and first grade. This other school, we hear, has a more actively involved special needs parent body, more active parents overall, a beloved resource teacher, and a very strong principal. We assumed we would not get in, the way you assume you probably aren't going to win the Powerball, but it's surely worth a buck to try.
In May, we had our IEP. The Roo's current school generously agreed to increase all kinds of services for our boy, mostly because he struggles so much with math and he has extremely slow processing skills. Oh, yeah, and monumental ADD. But every person at that table, without exception, acknowledged what a great boy he is, and that he is bright and charming and learning a lot, with help...
In June, the W called and said we had won the lottery, (and no that is not a metaphor I'm extending, it's an actual lottery where they supposedly draw names at random to be FAIR) and that our boy would be able to attend their school. Thrilled, my husband and I rushed over to sign the papers a week later as instructed. When we got there, it seems they had discovered my son's IEP. (We had not hidden anything, we completed our application fully and honestly.) The woman who greeted us at the reception desk explained that my son could not go to that school after all. She said, "We are a small school, and we already have a lot of kids with autism."
This next bullet point represents my husband morphing kind of like Bruce Banner into Lou Ferrigno on some level, and while he remained respectful at all times on the outside, he popped some serious muscles of indignation and outrage on the inside. Let's just say lawyers, civil rights experts, district officials, and experts in education immediately heard from my husband, all in his admirably polite but clear and definitive terms. Let's just say that my husband is a professional writer, and he used the tools of his trade to make his perspective absolutely clear. "This is not just the back of the bus," he explained, "this is being dragged from behind the bus, and it is NOT right, and it will not stand."
So this weekend we got a call and an official email from the district saying that the principal has been instructed to enroll our son on August 25, and we should go to the school to meet with her again on that date.

My husband needed to fight this because he knew he could not let injustice score another point against a child, our child, and he feels deeply gratified that he prevailed. That does not mean, however, that we are at all certain we now want to send our boy to the school that does not want him, where we have clearly made some enemies. It's very complicated, of course... but we have a month to figure out what to do next.

Keep him at his old school, where parents have made us feel heartbroken, the kindergarten teacher probably deserved to be fired, and all three of the first grade teachers he had seemed good but only lasted a matter of months? But on the other hand, at his old school, he had some really good service providers, a wonderful IEP, and people who find him adorable. They have told us that we are wanted there, and that's not for nothing, though it is a school with lots of room for improvement, and possibly at risk.

Or move him to the new W school, where the principal has us flagged as troublemakers, we don't know anyone else, and the amazing special ed resource teacher everyone has gushed about for the last 4 years is leaving anyway? But it's a nicer campus with more stability and resources, and better programs.

I didn't even mention the wild card that our daughter, Peaches, is starting kindergarten in a charter school next year. That means a year from now, she should be able to pull in her brother, as a sibling, and we'll have to consider what THOSE changes might mean, besides even more transitions for a boy who doesn't navigate them with particular grace and agility.

So, if you have a positive, encouraging comment to leave, we welcome it. (Of course, trolls and critics need not apply; comments will be moderated thankyouverymuch.)

For now, we breathe a little easier, at least, knowing that we have a choice at all.

Facing Myself

2011-07-23T09:31:00.001-07:00

I haven't posted regularly in what feels like forever, because I've been going back to school while working full time and raising two kids and helping my son navigate autism and finding a new job and ... well, acquiring significant material for this blog just by living my life. Now, I need to share. But I might ramble. And you might not want to follow, but I've got to get it all out, just for my own good. It might not seem like it, but I'm writing about autism, and the thread it stitches in indelible patterns throughout all the backdrops in my life.

So I'm in my first week at my new job, a chaotic event week at my new workplace that takes place once each year and coincided with my arrival, and so far I've attended a seminar about context in documentaries (there are inherent choices behind each cut, frame, shot, and edit), a live testimony from a survivor of the Rwandan genocide, and a presentation by an expert in the Holocaust. Now I am in line to get a plate of food, which I will eat during a working lunch on a topic I have not yet mastered. It would not surprise me if I looked a little pale, and if I had smudges under my eyes. The lady behind me said something like, "What moving, amazing... what stories... it's so hard, but so important..." She looked pale and had smudges too as we exchanged a few more convoluted thoughts, and I don't recall the transition, but I came around to full alertness when she said, "My friend told me after my family recently experienced our own tragedy that I was experiencing my own holocaust... You see, we lost my three and a half year old grandson..."

At some point she said she had no idea why she was sharing this with me, because it was not typical for her to do that, especially in a buffet line. At some point after that, she said, "He had autism. He wandered off... "

Every life is a story, every story is all about context. You cannot document a life without making choices of which context to include and which to leave out, because life is too big and messy and layered.

Our lives can seem so random, so disconnected, so different, but that's just costuming, just the cover art.

You see? I have not been writing much here at Rooster Calls, but I've been thinking about you, this, IT, quite a bit.

And now this is going to seem like a tangential explosion, but if you have come this far, hang on for a moment. I have not changed workplaces in 16 years, when I was a BABY, and I feel a little scared as I tackle my new responsibilities. My son got accepted into a new public school through a lottery system and we celebrated because it has such a good reputation for special education, and then that school said, "Oops, we missed the fact that he has autism, and we already have enough of 'those kids' so we are rescinding his acceptance" As my husband pursued legal recourse, I felt torn between wanting to fight and wanting to run from any school that wouldn't want my beautiful boy. Someone I love just had her heart badly broken. I turned 40 and worried about aging.

So all this to say I think it's a really good (scary, overwhelming) thing I made a career change that will help me remember things like CONTEXT, that will help me with the perspective I've been begging for on this blogging journey.

From my own bias as storyteller, through my own lens, via my own filters, this is what I heard this past week, in various experiences, and what I carry with me:
Life is hard. There is no justice. Life has no undo button. Memory is powerful. We live for our children - they are our hope. It does no good to compare suffering. Giving testimony can help a survivor go on. Some atrocities are very hard to fathom, and we must stand in the way of anything like it. Music can transport you. Our memories, stories, context change over time. Silence does not help. To choose not to choose is a choice. Choices have consequences. Never be a bystander. Time will pass. Hate hurts everyone. In the end, we have to live with ourselves alone. Stories teach. Writing matters. Live another day. Assume nothing. Show respect. I am a humanist.

I have no idea if I'm doing what I am supposed to be doing, and I mean that on global and granular levels, and I mean it about my career, my family, my blog, what I wore today. I do know I'm listening and learning, and my instincts tell me I am doing what I need to do. I don't claim to know if there is a reason that I met that grandmother in line for food, but I do believe that our stories mattered to one another, that we had something to offer one another. If you got to this point in this post, I hope that what I wrote today mattered somehow to you, had something to offer, something you can take away with you. My story is a patchwork, shot through with countless colors and threads, autism among them; just telling it helps me find the beauty in this messy life.

To Infinity and Beyond

2011-07-02T21:04:00.000-07:00

Today a stranger heard me mention that I have two children and he asked their ages.

"My son is seven and my daughter is five," I said.

"Oh, so you are practically done with your son! My friends told me that once your kid turns seven, you have taught them all they need to know, and then rest is up to them. Take 'em to school and let them do their thing, but by seven they are ready for the world."

I doubt that works for anyone -- in fact I know it doesn't, because well into her eighties my grandma was still teaching and worrying about my mom -- but clearly my beautiful rooster needs more than being dropped off at school to be ready to tackle the world alone. I write largely about the good things lately, because my boy has a lot to celebrate, and because I am feeling stronger these days, but we have plenty of work cut out for us.

Among many other things, we still need to teach my seven-year-old boy to ride a bike, swim, add, and BE A FRIEND. He needs help with zippers, snaps, utensils, and IMPULSE CONTROL. He has yet to master board games, hopscotch, sports, or CROSSING THE STREET. My husband just remarked to me, "I still yearn for when I can have a conversation with our boy about a non-preferred topic. I know we will get there, but it's taking a lot longer than I had hoped..."

All this flashed in my head in the moment after this stranger told me I was "all done" parenting my oldest child. I thought about just letting it pass but you know I don't roll that way.

"My seven-year-old has autism," I said. "He is a great kid, I'm so proud of him, but I'm pretty sure we are not all done yet."

There are no right answers, but I liked the way this guy handled what could have been a real conversation stopper.

"So you'll give him all he needs to be the most that he can be," he said, not breaking eye contact, not reneging on his persistent smile.

I decided to match him smile for smile, and I said, "Really, that's the best we can hope for anyone."

"Yes," he said, "it certainly is."

How Are You Doing with That?

2011-06-29T07:35:00.000-07:00

I left town for work, and that passed my Guilt-o-Meter. But I extended my trip for fun, and today I transition to the fun part. As I sit next to another conference attendee who is leaving today, someone I only met hours ago, I explain that I am staying on to enjoy myself a little with friends and mark some celebrations, and as I say it, there is no chance I can resist the urge to confess my guilt. I explain I have two kids, that they just started camp this week, that for one it's the first time at camp, that the other one has autism, and that I have guilt. She says, "And how are you doing with that?"

I answered with statements that all sounded like questions. "Like I said, I do feel guilty? But I know it's good? Because I've been a way for a few days before, but not this long? But it's okay? Because I got everything ready before I left? And I have been checking in? And it's all about baby steps? And we can't hover all the time? But, you know, it's... I... um, I feel guilty?"

And Katie says, "How are you doing with that?"

That's a good question. I guess this is how I'm doing with that.

How are you doing?

We're All Full Up Here

2011-06-24T19:17:00.000-07:00

My son goes to public school R. We've had our share of issues there, but it's had good points, too. About a mile away is public school W. It has an outstanding rep for being the best public school for spectrum kids and simply outstanding overall in every way. The parents I know who have kids with autism there talk about it like it's the haven we've all been waiting to find. Of course, I put Rooster's name in for the "Open Enrollment" lottery. He was selected. Cheery acceptance letter, celebration. Then they found out he has autism and that the IEP we just did a week ago gives him additional services next year. (We were NOT keeping it a secret in any way.) Now school W will not take him. "We already have too many kids with autism. Our resource program is full of kids who are 'residents.'" No room for more of "those kids"...

Crazily, I am taking school law class right now, and last week was on spec ed law. I am nearly certain school W is breaking the law. And they are being so heartbreaking in the way they are doing it. It seems very wrong to me.

I can't decide if I should fight. What to do? For my son, I don't want to put him where he isn't wanted, he's too amazing and adorable for that, and I know that sooner or later he's probably going to get into the wonderful charter school that his sister is going to as a sib. I think he's going to be ok. But to not fight, doesn't that mean I fail ALL the kids with autism? Shouldn't I stand up for what is right? I don't mean to get too Ruby Bridges, but it feels like a civil rights issue, like the dogs have been unleashed on my family.

If anyone has advice of a legal nature or otherwise, I am open.

All in the Family

2011-06-04T18:09:00.000-07:00

So the other day I was talking about how the children of employees at a local prestigious university can get free tuition if they get accepted.

"Just think," I said, "Can you imagine if I could send Peaches to a school like that for free?"

Oh. I am so ashamed that I said that. Immediately I thought of an Archie Bunker episode I watched sometime before the age of ten that I have never forgotten. It was about feminism, and a character told this "riddle" about a boy who is with his dad when the boy gets very badly hurt. The dad rushes the boy to the hospital. Just as they take the boy into emergency surgery, the surgeon says, "Wait. I can't operate on this boy. He's my son." The riddle is, how can the boy be the son of the surgeon as well as the man who drove him to the hospital? It was the 70s, and no one could figure it out, because "those were the days" when no one's mind could readily come to the conclusion that a woman could be a surgeon. Even in elementary school, I got it, and I felt enraged. I hated the assumptions, the minimization of my gender. For one brief moment, I forgot that I stink at science and I forgot that I wanted to be Charles Kurault when I grew up, and instead I wanted to prove the disbelievers wrong, I wanted to be a great scientist.

So a friend heard my mistake, heard me make the offensive university remark, and she shot me a look. "Can you imagine sending BOTH of your children there for free?"

I felt enraged, at myself. I hated the assumptions I had made about my own boy, the minimization of kids who have autism. But ever since that moment, I have been thinking how much I WILL believe that my boy can do anything he wants, anything he sets his mind to, and that includes going to a highly competitive university when he grows up.

I DO believe. Sometimes the group think of assumptions clouds things for me for a while. Sometimes I confuse belief with hope. Belief is easier, hope is scarier. But for my little seven-year-old boy who is on the spectrum and has ADHD, and for kids like him, I'm not going to give up on either. If you see me make a ridiculous mistake or an offensive assumption again, please, shout at me.

Just say, "Stifle yourself!" And I'll stop being a meathead.

Lost and Found

2011-06-01T13:42:00.000-07:00

The other day, I told my son he could not watch a movie, and he lost his temper.

First, he brayed like a donkey. I remembered in a flash that sound, and thought how long it has been since he did that, before he had the power of his impressive vocabulary.

Then, he stomped around. Reflexively, I looked to make sure all of us were out of reach, and then caught myself -- he no longer uses his hands to express frustration, just stamps his feet as he learned to do as a better alternative during our ABA sessions.

Then, he screamed, "I HATE my MOMMY. I HATE you, mommy." And the sting barely lasted a millisecond. I knew, with complete conviction, he would later apologize; in fact, within the half hour, he proclaimed his enormous love for me, topped with hugs and kisses.

I am so glad that my son lost his temper the other day.

It showed me how far we have come, how many tools he has, how our hard work has paid dividends. It showed him that he can get upset, and then he can turn things around. It reminded him that he doesn't have to get so upset, but that when he does lose it, the world will not end, and he can fix things himself.

Everyone loses their temper sometimes. Sometimes it's not what you lose, but what you eventually find.

Rooster Style

2011-05-26T21:18:00.000-07:00

My Roo loses teeth a bit like how he was born... slowly, needing a tug or two, and in somewhat of a dramatic fashion. He does things his way, that sweet boy of ours, and tonight he lost a tooth Rooster-style.

For the last few days, he has started crying unexpectedly. It caught us off guard. He isn't prone to fits of sadness. But what really threw me? When I asked him what upset him, he said, "I am going to miss you when you die, Mama." The mantra he tells me lately: "Mommy, you are going to get old, and then I'm going to be alone. I don't want you and daddy to die."

My husband wants me to tell our boy that we will never die. I can't lie, though --- it's virtually beyond my powers to tell lies. Plus, what would the DEITIES do with such a pronouncement? So I tell my boy, "I have no plans to go away, my love, I'm right here with you now, hoping to be here a very long time, and I love taking care of you. Let's go make some happy memories right now, okay?" He dries his eyes and nods.

There are people who know my boy who can't stand his unique ways; they find him too loud, it bothers them how he takes his own time meander along while they race from A to Z, and they would like to control him, soften his dramatic edges. But there are others who respond to him with an affection similar to that which he stirs in me, who catch his contagious enthusiasm and delight in it. These people make a point to tell me things like, "You know, he is a special boy." I realize lately that I divide the world into these two camps, and lately I only have heart for the latter. Someday I hope to have the patience and good will to reach out to the others, to teach them the error of their ways, to help enlighten them to what they miss when they choose not to make a friend in my little guy. For now, though, I have no time for anyone who does not dearly love a little boy with a jack-o-lantern grin, an elfish run, and a heart bigger than the sun and moon and stars.

Lucky Seven

2011-05-22T20:12:00.000-07:00

Magical milestones to celebrate as my boy turns seven:

He asked for a party.
Friends came to his party.
He had fun playing with friends at his party. (Yes, these are milestones. Take that, autism.)
When the party venue offered him free ice cream and I had to say no, he can't, he didn't even say a word, just enjoyed the special cake I baked him.
He could read his cards to me himself; at least, when he had enough patience to read the cards and not rip into the box... often it went something like this. "Have a happy birthday and I hope....OOOOOH, MOMMY, I think there are RACE CARS IN HERE!!!!"
He played a game. For. An. Hour. With the option of quitting sooner. Nope, he wanted to PLAY! With his buddy! And, when no one won, well, I think maybe we all did!!!!
He smiled and said "cheese" for a few photos ... sometimes even looking in the direction of the camera.
The photos show the big gap where he's missing a tooth; one more hangs by a thread. He looks adorable! But I am biased. But I'm also right. And he's also adorable. Because I adore him. So there.
I promised him a pinata, and I bought him one, but the party venue said no. Meltdown? Drama? Tears? Whining? No, no, no, and no. Score!
He wore his very special and dearly loved knight costume for the party. Another child asked to wear it. I bet by now you can guess what happened. SHARING! Happiness!
Someone gave him a movie he loves as a gift. He asked to watch it tonight. I said he could see a few minutes. Drama? Tears? Score again! My boy was just happy. He said he loved his day.

OKAY, deities, listen up, because this is serious. My little Roo had a good birthday, and I need to say it. Once every seven years or so, I expect a free pass. So. Back. Off. Let seven be our lucky number, and let the good times roll.

Math. How is That for a Title?

2011-05-14T16:36:00.000-07:00

Sometimes I say out loud, "I wish I could find..."

And sometimes the universe hears me and answers by way of the blogosphere.

If you are interested in helping students who have autism learn math, as I am, read this:

http://www.freetech4teachers.com/2011/05/individualized-technology-plan-helps.html

It was posted on my very favorite education blog for practical resources, freetech4teachers.com. Even my husband knows I have an intellectual kind of adoration of Richard Byrne -- or whatever. It is a phenomenal place to go for straightforward tips about tools, learning, instruction, school, etc. Subscribe to it! You will never be sorry. But this post is a guest post by Torrey Trust (http://www.torreytrust.com). I am headed over there right now to see what other gems I can discover. Already I am adoring Torrey, too...

Tired Meme

2011-05-12T08:40:00.001-07:00

I am tired
Of being tired,
Of talking about my tired,
Of yawning, swollen-eyed, in a bleary mirror
Of lather-rinse-repeat fatigue;
Aren't you tired, at least, at last, of this poem? Of me?

I am tired
of complaining,
of trying not to complain,
of admiring optimists,
of fearing optimism,
of the known quantity of my kvetching
even as I write this.

I am tired
of guilt - others' guilt as well as my own;
of pity - getting and giving;
of comparisons, of stares, of explanations;
of sorry, please, thank you, and the lack thereof.

Coming and going, backward and forward tired.

I am tired of seeing the fatigue around me
in my generous circle
of those who desperately want to help each other
and would
if not for their own, real, unflagging, well earned
Are you nodding a sleepy head?

I am tired
of those who are not tired, who,
at the salon, in the mall, on the talk show, in their bubbles contribute to the crush of exhaustion
sometimes with tiresome judgments and cruel commentary,
with malice and indifference;
of those who, alas, do not merit a place in poetry.

I am tired
of poor word choices;
of thinking about the r word;
of people saying spectrum but meaning only sky blue and teal.

I am tired
around and pertaining to parenting,
around and pertaining to special needs,
but not of them.
I am tired of not being the best I can be,
for and with my kids,
but not of them.
For them, I will be tired.
For them, I would not choose the restive road.
My tired friends, you know what I mean.

I own that tired is Okay. There is worse than tired.
I have a tired mantra I offer my kids.
"Try. Learn. Love. And be happy."
Worn to cliche, I do not know if they hear me.
But I hear me.
And still, though weary, I rise.

Bright Knight

2011-05-09T21:00:00.000-07:00

My son will turn 7 next week.

If you are a parent, you know how that can sentence can spin me into a dizzying stupefaction.

If you are a special needs parent, you know that sentence comes with the onus of ... duhn duhn duhn... deciding how to celebrate.

I almost feel like I should just rest my overwhelmed head in my two hands in a dark corner and not come out until he turns 21 and I can just buy him a beer or something.

My beautiful, charming, funny, complicated, sensitive, loving, challenging, delightful boy will turn seven next week no matter how much that shocks and exhausts me, and he simply and absolutely deserves to be celebrated, so I am trying my level-headed best to get it together and throw him a... a... (ohholycowamicrazyorwhat)...a party.

See, he doesn't want to go to Disneyland this year. He cannot be distracted and deterred by bribes of rides and slides and pricey tickets and the Fast Pass. This year, he totally gets it that it's his birthday and he gets to call the shots. First, I thought he told me that he wanted a "night party." Well, he's also been telling me he how much he likes the girls and how he likes the "sassy" way they walk, and I thought he envisioned himself in high school musical or something. Then his sister translated. "No! He wants a party in 'SHINING ARMOR' mommy!" Oh! So much more age appropriate! And so it became the plan.

My knight has invited his whole first grade class, and his pals from social skills, and a neighbor, plus I threw in a few ringers who I know love us enough to show. I think I hand wrote 40 invitations about a week ago, then I did an evite. We have 3 RSVPS so far. Good enough. I spent part of my weekend creatively solving the problem of how to make a knight theme work with no weapons or potential calamities or law suits, and then I handed my paycheck over to Oriental Trading, Amazon, and Castle Park. Next up, I will find our metropolis' finest nut free, gluten free, casein and soy free, chocolate treat that can be designed in the shape of a castle or dragon or what-have-you.

All I know is this.
Autism might be hard, and I might hate parties, and I might dread the unanticipated surprises that are likely to occur, and why exactly do kids parties have to cost more than my savings for retirement, BUT...
I can still vividly remember birthdays one and two and three... they are microscopically tattooed within my wrinkles... and they were hard, and I was scared, and my boy didn't want to celebrate. It wasn't fun. He didn't play with his friends. I wondered if he would ever be happy. I wondered if we would make it. Nothing felt right, and autism seemed to rain our parties out. And so we stopped having them.
And here we are. This year, my boy wants a party, and he wants to have fun, and he wants his friends to come. Some things stink, but some things feel kind of right. It's drizzling now, but the forecast calls for sunny skies again soon. We have a lot to celebrate.

Seven years ago, I carried around a gigantic belly full of a boy only I could hold, a secret joy all for myself. Seven years ago next week, I got the best birth day present, my very favorite boy, and I had to figure out how to start sharing him with the world. We have been on a journey together, a journey that I try to learn from an understand each and every day as best I can.

And so I will not rest my overwhelmed head in my two hands in a dark corner next week. I will stand beside Sir Rooster, and together we will slay dragons. And play miniature golf. And celebrate.

I Just Wanna Be OK...

2011-04-30T20:26:00.000-07:00

I still hold my breath when issuing an imperative.

"Son," I said tonight, "go put your pajamas on, now." {wince}

You could feel my held breath during the beat. I do not ever take it for granted when he sweetly replies, like he did tonight, "OK."

I still get my share of resistance to things. What mom doesn't?! But it is a gift, a treasure, a milestone, a minor miracle, when my son, after practicing the word for more than THREE YEARS, responds to a direction by saying, "OK."

I turn away so I can enjoy a private smile. Yes, those two little letters mean a lot to me. But more than that? It's what he doesn't say. Those other two letters. Well, actually, if anyone could spell "NO" with more than two letters, my son could. Still can. But now it's almost rare to get, "NOOOOOOOOOOOOOOOOOOOOOOOOOOO!" I do not miss those days one bit.

If you are a parent or teacher or loved one of a child who has autism and "no" is the biggest part of their limited vocabulary, please do not give up hope. Please know that I almost did, and I would have been wrong if I'd accepted that a tirading, toy throwing, temper tantrum-ing single world vocabulary was the extent of my son's future interactions.

We have practiced the word, "OK" with him, modeled it for him, rehearsed, begged, reminded, scripted, and bribed it out of him. We had ABA for every single week day for two years. We have books about it. We praise the daylights out of it. Not because we want our son to be something he isn't, not because we don't love and adore and accept him, not because we wanted to spend our time with him issuing commands and forcing compliance, but because he always seemed so furious in his world of endless NOs. He seemed to say no to ease, to peace, to comfort, to being. He has come so far, through sensory work, through OT and PT and school and "helpers" and... love. He is still a fighter in the best sense of the word, but he has put down his gloves a bit, and he has made some room for ease, peace, comfort, being.

Today he watched Lilo and Stitch, and he started laughing his heart out. Our friend Decy said, "He sounds so happy." I felt my eyes widen. To hear that said about MY boy! My boy?! I confess, I pretended I hadn't completely heard her. I said, "What did you say?" I wanted more. She said it again. "He sounds so happy." This is not a sudden thing. Our Rooster has been gradually doing better, emotionally, step by tiny step, but it still thrills me to hear anything so radically different from back when I started writing this blog in 2008. My. Boy. Sounds. So. Happy.

If you can't imagine hearing that about your child, hang in there. I am rooting for you both. Be patient. Do what you think is best. Love. Take whatever tiny baby steps make your family feel comfortable. Or whatever giant steps. Just don't give up hope. OK? OK.

Can You Hear Me Now?

2011-04-20T14:01:00.000-07:00

The other night, after an endless day, Peaches tried to stretch out bedtime. At least, I hope it was a ploy.

"Um, mama? You know how you said today I should just listen to the little voice inside me that tells me the right thing to do? Well, I don't hear that. I think sometimes my little voice tells me to make bad choices."

Glad it was dark, I bit my lip. Then, I tried this, "Peach, if you listen carefully, I know you will hear the other voice. It's inside you telling you the right thing to do. Such a sweet girl like you can do it, I know you can, if you just listen."

I pause for a long moment and then turn to go.

"Nope," she says. "Can't hear it."

Friends, I am beginning to get the impression that child needs her own blog all to herself. Alas.

Um, Should I Really Tell You This?

2011-04-09T13:41:00.000-07:00

Lately, I have some dramas or desires or plans that do not involve my children or autism.

Do you have any idea how significant that seems to me?

Whether it makes me feel guilty or giddy, selfish or lucky, or like it's a sign of progress or coming unglued, I marvel nonetheless.

You see, it's like saying, "Sometimes I forget my name." No, not exactly. Maybe it's like saying, "For a minute I thought it was a decade ago." No, not that either. Maybe it's like breathing for the first time in a record period of time. No, maybe there is just no way to say it but to say this:

It is really WEIRD when lately I sometimes find the energy in my life consumed by things other than raising my children, and how autism fits into that picture. It kind of has me all inarticulate and gaping. I am trying to figure out what to make of it.

Oh, there is PLENTY about autism keeping us busy. I mean, c'mon, it's a month til IEP. We're knee deep in decisions, debates, choices, therapies, social skills, birthdays, and facing some medical stuff for the boy Rooster that I don't feel like writing about just yet.

But sometimes there is room to think about my career. My marriage. Aging. Maybe getting the bathroom finally painted. Considering a tad bit of travel, to see family. Some of this stuff is also hard, and some of this stuff is nice. It all feels unfamiliar, and like the life of someone else.

To be honest, I am scared to publish this post.
Scared.

Awareness is So Money

2011-04-02T18:32:00.000-07:00

As the calendar turns to the month of autism awareness, it also turns to tax time in an era of budget woes and governmental quagmire.

I feel like I’m in a Tilt-a-Whirl. All around me, autism awareness advocates struggle valiantly to promote inclusivity, empathy, awareness, community. And all around me, bureaucrats fight over the failing economy, especially about who should pay for it, which is almost always someone “else.” People are in their own frenzy of fears, and every important issue in our country – from health care to education to wars to taxes -- seems rife with divisiveness and antagonism. Dizzy, I have held onto the nearest wall, immobilized, waiting for my equilibrium, but now I have something to say. It might be a jumble, it might mix some metaphors and take broad strokes and combine disparate topics, but amid the chaos, there is a simple point: It’s time for us to take care of our country.

And you know what? Taking care of autism IS part of taking care of our country.

Let’s say you don’t care a bit about autism, and even less still about inclusivity, empathy, awareness or community. Fine. Let’s say instead you care only about money, capitalism, and American corporate success. Fine, fair enough. Here is a concept I think you will understand, pertaining to education, health care, and disability services:

You can pay big now, or you can pay huge later.

You can pay high costs for services for children, or astronomical costs for lifetime services.

Or forget about special needs for a second. You can invest in schools, regardless of whether you have kids or even like them, or you can pour much bigger sums of money into such sinkholes as prisons. Don’t like property taxes going to the public schools you don’t use? Would you prefer them locking up the uneducated masses that you fail to rehabilitate? Would you prefer increased crime and drug use? And when I say pay now or pay more later, the later is not a generation away… the later is getting sooner and sooner as the size of our neglect grows and our past transgressions come due presently.

Hey, if you don’t know or love someone with a developmental disability, I get why you might resent “your tax dollars” going to serve “them.” I don’t need to try to reach your heart, really, because I can talk to you where you live, in your wallet. I want you to think about the twelve-year-old college student well on track to win some of the world’s highest prizes for his genius in math and his contributions to society’s understanding of advanced physics theories you and I are not likely to grasp. Have you seen the press coverage of this boy? I want you to imagine his parents had not had access to any services when, at age 2, that child received a diagnosis of autism. They thought he might never communicate and participate in the world around him. Can you please calculate the difference between what that child will likely now contribute to society, and what he would have cost “American tax payers” had he had to live in an institution? I’m talking dollars and sense here, people, and no, that is not a typo. What about the comparison between what that boy might contribute to society and what you and I might have to offer? Is he more or less worthy than you are? Is he more or less an “investment” in America’s future than I am? If you can quantify those things, I hope you will explain how. Well, for my money, it doesn't work like that, not one bit. But, for anyone out there who simply has to measure things, I will try to make things add up.
Simply put, people invested in that boy when he needed it, and now, his future tax contributions will likely contribute to taking care of us when we are the vulnerable ones. I wonder how he and his generation (currently 1 out of about 150 of which have autism) will feel about taking care of the elderly and infirm?

It’s autism awareness month. I wear blue not because Autism Speaks necessarily speaks for me or my family, or because I’ve ever been much of a joiner, but simply because I feel less lonely when I, as an autism parent, connect with community. But you don’t have to be interested in being part of my community to realize that our country must support education, health care, and services for all of our most vulnerable members, including those with disabilities. You just have to understand basic principles that tell us not to be penny-wise and pound-foolish.

That isn’t really how I roll, to be honest -- I think you should care about protecting vulnerable citizens not because they might or might not turn out to disprove Einstein’s theories, but because they are human beings, and we are all one big human family. But if you have to make it about money, then maybe that’s just your own vulnerable special need, and I’m willing to look past it to help you learn, because we all need and deserve some help and inclusion in this life.

One Note

2011-02-27T11:26:00.001-08:00

I have only one real point today:

I love my kids.

I love the one with autism and the one without.

I love the one who learns easily and the one who has to work.

I love my loud, messy, impulsive kids.

I love my sweet, affectionate, creative kids.

I love my unusual, surprising, confusing, mysterious kids.

I love my kids when they are popular and when they are not.

I love them whether or not you do, or anyone else does.

I love them the same, though differently. Equal, immeasurably.

I love them when I am angry and when I am joyful.

That is worthy of a blog post because.

Fiercely, gently, hugely, and to the best of my ability, with ease and without, 25 hours a day,

I love my kids.

It's My Party and I'll Blog...

2011-02-21T08:28:00.000-08:00

I started this blog three years ago.

Then...
I was scared.
I felt hopeless.
I needed to unload, be heard, connect, find comfort, hear from others, cry. I cried every way you can, and never seemed to run dry.
My son seemed to struggle every waking minute, and sometimes while he slept, to regulate, cooperate, interact, communicate, find his balance, be.
I wrote to seek, I wrote to salve, I wrote to save.
I had no life.
I did not have a clue.

Now...
I worry. But less. I worry like I did 8 years ago, or 10, but not like three years ago, when worry had me by the throat.
I hope. A little. Not brazenly. I have not forgotten the deities who remain out to get me, but we maintain a wary settlement for now.
My son regulates, cooperates, interacts, communicates, and finds his balance sometimes, and I accept the process, and his autism, more and more when he struggles.
I write for pleasure and for work, to help and to heal, sometimes for myself and sometimes for others, when time permits.
Our lives feel full.
I am getting a clue.

Yesterday I took a walk with a dear friend. We live a few streets apart and try to find at least a day or two a week to hit the neighborhood bike path for exercise and friendship. We talk about work and family. I asked about her husband's work. "That reminds me," she said. "He has a co-worker, a woman with a four-year-old who got an autism diagnosis last week" I told her, "Have her call me. I'll do anything I can to help." It is my turn, after all, and I have learned some stuff that might be useful. I never turn down a chance to help another mama the way the mamas of the blogosphere help me. My friend and I walked and moved on to other topics.

Yesterday I took my daughter out to lunch with her classmate S and S's mom. "Is Peaches an only child?" she asked. "No? Where does your son go to school?" I told her about our Rooster, and she asked, "What do you think caused his autism?" I told her my thoughts, my uncertainties, my questioning process, and my one conviction: "I know parents who believe they know what caused their child's autism. And I just try to respect where they are coming from, even though I don't have any answers or might see it differently. It's a hard road, and everyone has to find their way as best they can. Autism is not just one thing. And there is not one right way to think about it."

Three years ago, the blogosphere embraced me, embraced my family -- my Rooster, my Peaches, my husband and me. They listened to the turmoil, gave me space, sent me love, explained the tools and choices available, offered their own stories and feelings, and, best of all, painted a picture of a brighter future. They didn't promise fixes or tell me I could CURE my son if I did THIS or THAT the way they did, but they -- YOU -- told me that, no matter what happened, time could very possibly help us all in some measure. That, usually, odds are good that time does bring some ease. Children grow. Families learn. Sleep comes. Development unfolds. Wisdom takes root. Usually.

And for us, much of this feels true three years later.

We found one good doctor, changed schools, endured two years of ABA, conquered late potty training, evolved our PT and OT programs, survived IEPs, made peace with the mysterious improvements that a GF diet does bring our son despite our inability to explain why. We tried horseback riding and music, quit speech, joined a social skills group and found a MeetUp.
We sleep more, fight less, laugh some, and work hard.
We have some friends.
I asked our Rooster yesterday, "What is autism?" He said, very, very slowly, "Autism is trying." It is ambiguous, but I like it.

As I write this, one child screams and wails in the next room, and the other tries to soothe. Peaches, my NT almost-five-year-old, has flipped out because I spoke to her sternly, and because she is a drama queen prone to flipping out quite often these days. ABA has taught me she is an attention seeker of the highest proportion. Rooster, who clearly seeks to avoid her noise, offers a refrain of, "Feel better, feel better... please stop crying... behave yourself! Stop crying!" But if he only wanted to avoid the noise, he would walk away. He would take his toys to the playroom and be done. He comforts his sister because he loves her, he hates to see her sad. He comforts his sister because he can. Because he has empathy. Because he loves his family. Because, like the rest of us, he seeks peace.

Three years later, I have a different lens, a different perspective in many ways. I don't expect my family to feel like a Little Bill cartoon or an episode of Seventh Heaven. I haven't given up hope that someday we will be maybe a little more Charlie and Lola and a little less Oscar-the-Grouch-meets-The-Simpsons. But forget about TV, three years later I just look at our family as our family, an example of one, a Casa de Rooster and Peaches. I see where we have been, who we are, and the journey we walk together, step by step.

Today, my son read me a book. My daughter asked him to share a sticker from the goody bag he got yesterday at a party for kids on the spectrum. "Okay," he said. "You can have ONE. But only ONE." Today the sun came out in SoCal after days and days of downpour. Today we get to stay home on a Monday. It's a three day weekend. It's a three year anniversary. It's a pretty good day, three years post autism diagnosis, and that is something to celebrate. And so I celebrate with this gift to myself: writing here at Rooster Calls.

We All Have Special Needs

2011-01-22T09:15:00.000-08:00

Believe it or not, the parent association meetings for my son's school take place at 6 PM on Friday nights.

Our school board member could not believe it either, but he came anyway, dined on cheap pizza and iced tea at card tables in the auditorium, and pitched his plans for a new span middle school in the district.

A pretty good-sized crowd turned out, and with my oldest in first grade, I expected to be a little bored as secretary taking notes about the middle school.

Then the Q and A started. The Q and A that made it the most memorable meeting I think I have ever attended...

Are there special day classes at this new school? Because my son has special needs.

Are kids fully included? Because my daughter has autism.

Is it going to remain open enrollment? Even for kids who have IEPs? Can you promise?

I have no idea what came over me but the meeting changed for me very suddenly. I went there to take notes and get home as early as I could to write a paper due Monday for a class I'm taking; I had wanted to fly under the radar quick and painlessly. But as I realized how many people in that room had kids with special needs, my heart started racing. I zoned out of their Q and A for a bit for some internal Q of my own.

She also has a kid in the inclusion program? You mean I'm not alone in that here, like I tend to assume? You mean there as so many of us? Why so many? All autism, or other diagnoses too? Can you hear how scared they are about the school in our district? We are, I mean? Why is it so hard? Are the NT families tuning out? Do they get it? Why can't we do more for kids, all kids? Why are the numbers soaring? Why are the dollars disappearing? What can we do? How long will it take?

I lost the thread of the room and I shot my hand in the air. I had no plan. I had to listen to what I said just like everyone else did because I didn't know where I was going.

I spoke louder than I planned, and slower than I am known for.

"As the parent of a child with special needs, I get sick of being made so other all the time. And as an educator, too, I just want to say that it is past time that we all realized that all people have special needs. And that we all benefit when schools address all those needs to the best of their ability. Not other schools or other rooms in the school, not somewhere else, but everywhere, fully included. And there just are not enough options for meeting kids needs, not enough schools doing what needs to be done to help all learners, and I can't understand why not."

The school board member considers this new middle school his pet project, the thing he says he commits to making happen, hell or high water, during his term, through sheer determination to serve the needs of the constituents, and that is why he spoke to us on his third late work evening of the week, tired and dogged. But that focus shifted when I spoke, and the night seemed to crack open, and a new connectivity hatched as a result. I have no perspective on how others saw the night. But what happened next, for me, sent me reeling. The school board member engaged me. He agreed. He spoke with passion. He believes in inclusion, he cares about providing services, and he was willing to talk about this important concern instead of his middle school for a portion of the night.

At the end of the evening, I walked over to a mother who has a 10-year-old with autism. We clung to each other's stories like the only two English speakers who find each other in the whole of Asia after trying in vain to pick up either Mandarin or Cantonese. As we talked, the assistant to the school board member approached us cautiously. Young and beautiful and clearly career minded, she had put together the Powerpoint and served as an able sidekick to the school board member, but coming into the circle to chat she looked like a nervous deer. She stumbled through explaining that her sister recently died, leaving behind a nonverbal 8-year-old. Together, she and her mom needed to figure out what to do for this child to get him the services he needs. Business cards and iPhones and hugs circulated rapidly as we exchanged information before she left with the school board member.

The other mom and I walked to her car, then drove to my car, then said goodnight four times before I finally drove home. We talked about our dreams for our sons, our journeys with autism, how much we would love to start an inclusion model charter in the district, how we might involve the guy from the school board because he seemed to get it and want to help.

In the car, my husband called, wondering why on earth a parent association meeting would last past 9 on a weekend night. I wanted to tell him about the meeting. He asked what happened? What was it about? I tried to find the words to tell him. But what was it about? About a middle school. About inclusion. About community. About dreams. About possibilities. About autism. About parenting. About questions. About healthy food in the cafeteria. About government. About reform. About money, or lack of money. About local control. About children.

As secretary, I can tell you what HAPPENED at the meeting, but I guess what the meeting was about is determined by perspective --- the hat you wear, the cards in your hand, the agenda you care about.

But that makes sense. Because. we. all. have. special. needs.

An Okay Trip Down Aisle Three

2011-01-16T16:45:00.000-08:00

We here at Casa del Rooster are doing, er, um -- okay -- these days, in case you visit this blog regularly and have been wondering.
You know "okay"?
Okay, as in, the Rooster's Mama has never seen a half full glass?
Okay, as in, shhhh, never tempt a jinx.
Okay, as in a song a dear friend gave to me:

I just wanna be OK, be OK, be OK today.

Yeah, enough said about that. But on a recent okay day, I found myself rushing through the grocery store, focused on my list mantra: milk, chicken, fruit, lunch box stuff... milk, chicken, fruit, lunch box stuff... milk...

Then a lady stepped in front of me to get some cheese.
I think: I know her, I know her. From where? How do I know her? Who is she?
She moves to the next aisle but I stand rooted. It's important. I can see her in my mind, and she has something to do with the Rooster. I pass right by the chicken I need and slowly head to the aisle I think she chose. Yes, there she is again, with her list, her white hair. I close my eyes for a moment. Yes, I see her now. It has been, what, three years? Four years? Am I slow to recall her identity because my aging mind forgets more and more as I approach 40, or because my defiant heart didn't want to budge from its perch in an okay day to visit a painful memory?

She is one of the doctors from our old pediatrics office. Not our own former doctor, the young Dr. S, but his older partner. The one everyone told us balanced things out -- you get the young Dr. S who has small kids, a big heart, infinite energy, and the latest greatest knowledge, and you get his older partner, doctor J, who has a grown child and all the experience you will ever need.

Seeing this doctor pick out apples should not be enough to knock me off my okay perch. And it's not, really, overall. I will still ring up my groceries with the adorable guy who always has something nice to say, and I will still smile at all the grocery jokes they make at TJ's. I will still go home and enjoy making my kids a healthy snack from the bounty I just bought. I will still watch my son and marvel at his recent improvements, his growth, his hard work. I will still have an okay day even when my kids skirmish a bit, and I will still be okay, be okay, be okay with my kids snuggled up on either side of me for a bedtime story.

But for a moment in the grocery store, fragility seizes upon me in the produce aisle. The memory of fear, isolation, loneliness, fatigue, failure, and desperation is not okay. A missed diagnosis, unreliable medical care, insensitive remarks, arrogance, disregard for developmental knowledge in pediatrics, wasted time, needless tests, horrible referrals, bad attitudes, selfishness... who knew how barely below the okay surface these old injuries could live?

I circle back to where I started to get that chicken on my list. I do not speak to the doctor, and she has no idea who I am or why for a moment I had to close my eyes and hold on to my cart. And that is okay with me. I only hope that she and her partner both remembered what I said when I quit them, three or four long years ago now: The next time you meet a child like mine, a child with autism, I expect you to do right by that child, by that family. I expect you to listen to them, hear them. I expect you to diagnose them. I expect you to help them. I expect you to provide resources to them. Because that is your job!

My favorite cashier asks, "Did you find everything you need?"

I think so. Eventually.

Shhhhh.

2011-01-13T19:33:00.000-08:00

I have a confession.
I have been holding out on you.
Something happened.
And I didn't want to tell you.
Because it's a good thing.
And I do. not. trust. good. things.
I do not speak lightly of good things.
But. Um.
Some people have been trying to explain to me lately that the world does not work the way I think it does. And that maybe, possibly, people SHOULD say the good things.
Er. I don't know. I'm open, but I'm uncertain.
So I want to give it a try. I want to tell you a good thing.
I beg of you not to jinx me. Not to hate me for the good. Not to tell on us. Not to let us be punished for a good thing.
Okay, maybe if I tell you this good thing, and the good thing stays, I will think about considering that maybe some of the people who want me to be more, uh, hopeful, might possibly be on to something. We will have to wait and see.

So.
A few months ago.
We stopped Melatonin.
My children, almost 7 and almost 5, just sleep at night now, like they are supposed to, most nights of the week, both unmedicated.
Ahem.
This is a very vulnerable moment for me.
Please, don't even comment.
Let's just wait while I hold my breath and see which of us is right about how the world works.
And let's see how long it takes me develop insomnia.
Good night.

What's Behind Door Number 3?

2010-12-29T21:02:00.000-08:00

A letter came in the mail yesterday that ranks up their with audit notices, jury summonses, and credit card bills all rolled into one. If you look at that letter now, you can see all the signs that it made its reader crazy -- the paper has clench marks, some tear stains, maybe a drop or two of my blood...

"With a heavy heart" the principal wrote that my boy's first grade teacher will not return after winter vacation. I should say, my boy's SECOND first grade teacher. His first teacher lasted about a month before she left for a job at a better school, where her kids attend. They did not replace the first teacher, they just took the whole class and added to another. In one fell swoop my kiddo lost the experienced and highly regarded teacher I'd begged the universe for, the classroom I'd helped him transition into, and the small class size. He landed in a different room on a different floor with an inexperienced young thing trying to handle 28 first graders, including some who had made life nightmarish for Roo in kindergarten. Now, she's gone too, and I called the principal urgently requesting contact with the third string before school resumes in what seems like a year and a half (or on January 10) after this lengthy winter break that helps nothing but the pathetic budget.

So, tomorrow my husband will take Rooster by the classroom to meet New Teacher #3. We worked for several hours today composing a letter to #3 about our expectations. It goes something like this:

Welcome, please try to last longer than Lee Press on Nails.
Our boy has autism, and we know more about him than you do.
We are sick of getting the run around.
We pay an ed therapist a lot of money because she knows what she is doing, and none of the teachers here seem to. We've brought her in for meetings with the other revolving cast of characters and explained how her strategies help our guy with academics, especially math. Use them. Like, on Monday, when you start. Use. The. Strategies. They aren't rocket science. They are simple and they work and you will use them.
The IEP says you need to help out. Read it. Help out. Do your job.
We will be in touch. Lots and lots of in touch. In your mail box. In your email. On your phone. In the homework folder. Often. One of us works right across the street, and can run fast, find you in heartbeat. Want us to go away? Gladly. Then stick around, use the strategies, read the IEP, help out, and do your job.
Our boy has autism, not the plague. He's sweet, cute, and he works his butt off.
Sincerely,
Rooster's parents, the Bears

Does anyone have $46,000 I can borrow? Um, annually? I heard of the perfect private school for my boy, only it has one problem. Or make that 46,000 problems. But the public school he's in now has ten times that many, a half million problems, all for "free."

Take That!

2010-12-29T20:49:00.001-08:00

Okay, pardon my journalism major while I paraphrase this post, because I'm old and my memory has holes in it the size of our school district's deficit. This gives you the gist.

My kids sat in the playroom at a small table making crafts. Each one designed a colorful creature using materials from a kit sent by their adoring and generous grandma. I eavesdropped from the kitchen.

Peaches: I'm going to name this guy autism. He's a bad guy!
Rooster: Yeah, autism is a bad guy.
Peaches: Let's punch him in the nose!
Rooster: (Laughing) Yeah, let's beat up autism!
Peaches: Kick him in the face!

Where on earth do they get this stuff?

I interject from the kitchen: Kids, you know people who have autism are not bad, right?

Peaches: We KNOW that. Rooster has autism. But autism is a bad guy!
Rooster: We're going to kick him in the face.
Me: Well, you don't have to like autism. But I don't hate autism. Because I know a lot of people with autism and I really like them.
Peaches: Well, but autism is not good. I mean, the people are good, but not the autism.
Me: Maybe. But punching something you don't like doesn't seem like a good idea. I don't like "beating up" talk. I don't think you should kick people in the face!
Rooster: It's funny!

My husband gets in on the conversation: You know, kids, autism means that your brain works differently from how most people think. That's all.
Peaches: This (holds up creature) is autism, daddy! He's a bad guy so we're going to make another guy who punches him.
Husband: Do you know any people who have autism?
Peaches: Yes! Rooster does. Come on, Rooster, let's play with these guys!
Rooster: Yeah! I want to beat up autism! Kick him in the face!

Priceless

2010-12-24T19:51:00.001-08:00

After lunch at Z Pizza yesterday, we passed right by a shoe store. Since apparently someone has been plying Peaches with Miracle Grow, I thought we should duck in and grab her a new pair of kicks that fit. About a month ago, Roo got new shoes, so I had no plans to get him any yesterday. Of course, then he spied the light up shoes with skulls on them, and his sister says, "You HAVE to get those, Rooster, they are so much cooler than your OLD shoes." Thanks, Peach. Suffice it to say, my boy lost his marbles that I would not give in and buy him an extra pair of $50 shoes that he does not need and I find aesthetically abysmal. He cried all the way home and told me about 600 times that he HATES the OLD (more expensive, bought just one month ago, light up, cute) shoes because they stink and he would throw them in the garbage.

I did not back down one centimeter and gave him the same reminders all 600 times. (Not looking for opinions on that one, just saying.) When he threw his shoes in the trash, I made him take them out, apologize, and listen to my speech about appreciation, money, etc...

Cut to this evening. Although I am Jewish and my kids and I light candles, we also have a Hanukah bush and will open presents tomorrow morning in our play room. (Guilt, guilt, guilt.) So I suggested maybe we already have too much stuff and maybe we should do a quick sort and organize. Peach says, "What do we do to organize?" So I suggest we look through our stuff and decide what to keep, what to throw out, and what to give to other people who might need or want the stuff we aren't using.

Rooster appeared engaged in playing with toys. Without missing a beat, though, he looks me right in the eye and says very calmly, "I have some stinky shoes I want to give somebody who wants them. They can HAVE them."

I don't know if that READS funny at all, if you can picture the scene or you had to be there, but I can tell you it took me 10 minutes to breathe again because I laughed so hard it was silent, and the kids looked worried I might keel over.

So, autism. Maybe it causes some perseveration and tantrums here at casa del Rooster. Maybe it gives me worries that keep me up at night. But I think we spit in its eye tonight. Go, Rooster. Go wit, go conversation, go eye contact, go FUNNY, go joint attention, go Rooster, go. Happy New Year!

Pamper Your Chef

2010-12-09T19:14:00.000-08:00

Okay, today is the day for you to do some holiday shopping.

http://elizabethaquino.blogspot.com/2010/12/pampered-chef-giveaway.html

If you click the link above, you will see my friend Elizabeth has exciting information about how Pampered Chef shopping can benefit one of the best community building resources out there for families raising special kids, Hopeful Parents. But hurry! Time is almost up!

By the way, I am partial to the stoneware, myself...

Ho ho ho!

Special-ization and Survival of the Fit-ist

2010-12-04T20:40:00.000-08:00

As I type, I try to block out my son's screaming tantrum. We rarely sees these ragefests anymore, but they sure bring back old memories. We used to see this nightly. Now we go long enough between them that I can no longer recall when he last turned red as a tomato and slammed every door in the house like this. So you think I'm upset? Frustrated? Angry? I'm not. It's fascinating on so many levels.

First, as he stomps and screams and paces, his sister calls out prudent advice. "Take a deep breath," she suggests. "Do you want me to tuck you back in?" she offers. She modulates her tone of voice. She asks me for guidance. Shazam, my girl returns! Just like we haven't seen the Rooster act out much lately, we also haven't seen that sweet, gentle girl we call the Peach, either.

And I'm fascinated about how these things are coming together.

For a few weeks I've worried and lamented all about Peaches and her inescapable change in personality. She gets in some trouble in preschool, she acts out at home, she seems sensory seeking, she becomes remarkably hyper, she crashes into everything she can find, she puzzles us and her teachers, she gets distinctly LOUDER. Then, a few days ago, I picked her up from after-school care and she hands me a pile of adorable holiday cards she drew. "Thank you!" I cooed. "I love them!" She stares at me and says, "They are not for you! They are for the HELPERS. You have to MAIL THEM." Ah, a clue. On Halloween, we'd said goodbye to the "helpers," our ABA therapists who felt like they lived with us for two years. I begin to wonder if Peaches misses them, misses the structure, misses the attention she got when her brother's ABA included her. Fast forward a few days, and NPR has a story on siblings and why they tend to vary so much in personality. One theory ties in to Darwin, and generally follows the notion of specialization of species. Roo came along first and took the role of Tantrum King, so Peach came along to be Princess Perfect. Well, not always -- Pixie Mama can attest to Peaches not always living up to her name -- but now that Roo is doing much better overall, Peaches has plummeted. And it all makes some sense.

Tonight, before the Rooster flipped out because his daddy denied him some candy, I thought about these recent changes, and I asked Peaches, "How do you feel when Rooster behaves himself better than he used to?" She shrugged and looked down. "Peaches, how do you feel now that Rooster doesn't need helpers anymore?" She shrugged again. "Sweetie, how do you feel when people tell Roo how great he's doing?"

She looked at me. "I'm not doing great?"

Ahhhh. Can't believe I didn't see this all coming.

And then within an hour, the candy rage ensued. And there came my girl out of hiding, gentle and maternal and in charge.

I need to do a better job at balancing my kids' needs. I need to give them both room to specialize in excellence. I need to remember what we learned about ABA and the need for attention. I need to brush up on my Darwin.

The screaming just stopped. We all survived the fit. I call that survival of the fit-ist.

Chapters

2010-11-20T20:59:00.000-08:00

We wrapped up a chapter in the book of Rooster's autism, and for us this means we come home at the end of the school day like free citizens. Yes, friends, we have graduated from ABA. For almost two years, I hightailed it from work to pick up each grumpy, noncompliant child, fought my way through LA traffic, and pulled in my driveway to find a therapist waiting for us to start part two of our work days.

When we started, we thought if we got nothing out of ABA but potty training, it would be worth it. We got a lot more than that. Roo learned to tie his shoes. To take turns. To sequence ideas. To stay on topic. To play games. To be a friend.

I can't say ABA did it all, but Friday when I picked him up from school, a little girl with pigtails abandoned her place in the jump rope line to race over and give him a hug before he left. Today we carried on a long and meaningful conversation about why he cannot quit going to his math tutor. And this afternoon he played a great monkey game with me while we got assessed for the next chapter -- AKA social skills classes. Ah, yes. We won't be slowly galavanting home every day all of a sudden. But during the holiday season, we plan to live a little freer, enjoy our newfound ease.

I remember right before we started I told the members of my autism Meet Up group that we had just been approved for 15 hours a week of ABA. "Oh!" several moms remarked. "Well! We will miss you! See you in a couple years!" I am looking forward to seeing them again. They were right. We stopped going to meetups because ABA took all our nights, and we saved weekends for chores, family time, tutoring, and horseback riding. This week, we ate dinner in a restaurant! Like regular families! Friday night I even took the kids to the holiday parade. Ah, to be a bird released from its cage...

I did not love ABA, but I have to say I feel really happy we did it. We struggled significantly more than the family on Parenthood, to be sure, and I longed for the privacy to eat dinner in my pjs once in a while, but ABA gave us some worthwhile tools, strategies and structure. For Roo, the programs did not look like the DTT programs I expected from my limited knowledge of ABA. Mostly, his ABA focused on play therapy. And while he didn't conquer every challenge, he took it as far as he could in the realm of playing with his sister, his therapist, and me every day. Now we're ready to try it with four kids in a social skills class. But get this... social skills is once a week. And. (Are you ready?!) I. Can. Drop. Him. Off.

Peaches has waited almost her whole life for some undivided mommy attention, and as Roo's behavior improved, hers fell apart completely. If she qualified for play therapy too, believe me I'd sign her little self right up pronto, but since her only diagnosis is stubbornness, I'm going to try to work some one-on-one magic with her my own ABA-trained self. I think this could be a good new chapter.

It All Adds Up

2010-11-07T20:05:00.000-08:00

I always know when my husband has used the ATM to deposit his paycheck and any reimbursements he got from work expenses. A few days later, a letter comes from the bank. Thank you for the deposit of those checks, the letter says, and here is your corrected math...

Hey, I can't throw stones -- I took only college algebra, reveled in my B, and ran as far from the math building as I could to get my BA.

My boy, with double vision until almost 4, holding his head tilted and turned to help his brain make sense of the world, never had a real fighting chance at number sense with the DNA we gave him. Not that ADHD and autism help much, either. And, can you say, dyscalculia?

Every day, I sneak the same question into a conversation with my Rooster. It's always, in essence, 2+2. Sometimes I make it into a word problem. I've invented a character named Two Head Fred. Guess how many eyes he has? Cookies get involved. Legos. Two for you and two for me. His shoes and Peaches' shoes. Now, of course he is on to me. But in all sincerity, he looks at me daily and says, "2+2? Mom? I don't know? Five? Free?" He can't do TH sounds yet either.

Yes, yes, we have the Touch Math curriculum. Sure, sure, we've tried songs about math. Oh, of course we bought the stuff from Melissa and Doug. Absolutely I have Unifix cubes. What do you mean did we get a tutor? You betcha. YouTube? Watch it. Gotta love School House Rock. My husband bought a supply of nuts and bolts to use high interest manipulatives in patterning and sequencing practice. But so far, it ain't adding up for Roo. "Um, one? Seven?"

Sometimes I panic. Sometimes I lose patience. (Yes, me.) Sometimes I freak out. Sometimes I get lazy and let things slide.

Here is what works best, if not for Roo, then for me: I look back at the Pile. You know, the documentation. The assessments. The report cards. The lists. The bad reviews, as it were. I remind myself that we had days when we wondered if he could GO to school. You know, as in handle a day? And I thought he might be going to the prom un- potty trained for a while there. And reading, which has a LONG WAY still to go, came a long, long way in the last few months. Today my boy and his sister built a castle out of pillows and only fought about half the time that they laughed and conversed. Today Roo and his dad cooked gfcfsf corn dogs, and Roo wrote down his version of the recipe. Today I am reminding myself: all will be revealed in time. Don't go miscounting the chickens just yet. I mean, what works best for me? Keeping in mind that everything is relative. What works best for me today is this: If dyscalculia turns out to be our biggest problem, life could be worse.

It's November and I am thankful. You can take that to the bank.

Baby Talk

2010-11-02T19:53:00.001-07:00

You are a big baby.

No, don't take it as an insult. I'm a big baby too. Proudly.

It's like Sandra Cisneros says in her wonderful book of vignettes called the House on Mango Street. "What they never tell you is that when you're eleven, you're also ten, and nine, and eight, and seven, and six, and five, and four, and three, and two and one... Because the way you grow old is kind of like an onion or like the rings inside a tree truck or like my little wooden dolls that fit one inside the other."

So I for one want people to remember that sometimes I'm a baby, a teenager, a bride, a middle-aged mama, all at once; I am determined to remain more mindful that those around me are needy preschoolers, gawky tweens, ambitious college kids, even when their years outnumber mine, because it helps me remember our humanity. I am tired of my own intolerance toward people, and I am exhausted of the intolerance I witness. We tend to talk about children like they are sacred members of society but only until they become adults. What then? Yes, I see children as sacred. And the children you and I once were did not die, we simple grew our onion skins around them, some layers thicker than other; we too should respect the sacredness of one another.

I write this on election night, as I watch malicious slander turn democracy into a competition of who you most want to vote against, a contest of the lesser evils. For once I found myself almost able to imagine not using my rights and exercising my responsibility to go to the polls. Almost. (But my inner adolescent caved to the peer pressure on Facebook, the little girl in me listened to my grandma's voice inside my head, and my six-year-old self needed to wear that "I Voted" sticker to school today.)

I write this after overhearing one educator completely out of patience with a peer, disparaging their colleague in a way they would never treat a child in their classroom. If they heard their students speak in a like manner, they'd pull out some social stories and teach some important lessons!

Don't get me wrong, I espouse the idea, "You ought to be old enough to know better." Adults should act like adults - responsible, knowledgeable, reliable - and adults should face consequences for childishness. But by that same token, self-centered name calling IS childishness. Petty bickering, tug-of-war selfishness IS childishness.

All I'm saying is that, as adults, we can talk until infinity about the importance of inclusion in schools, anti-bullying measures in high schools and colleges, and friendship circles for kids, but we err when we think the cutoff for those needs comes at age 13 or 18 or 21. We (and I mean me, too) need to respect the feelings and the value of each and every person, big babies or small.

I am a big baby, and I endorse this message.

Real Estate

2010-10-26T18:04:00.000-07:00

I have the Lincoln house on my mind.

When Peaches was a baby, we began outgrowing our first adorable little house. In SoCal buying a house ain't easy if you aren't a media mogul, but we scraped together what we needed and started looking. A expert finder, I spied a great little yellow house on Lincoln Street before our hot shot agent could say Open House. Oh, so cute was this yellow house. Old, full of character, a master bedroom to envy, a master bath to lock yourself in and refuse to exit. I wanted the yard for my kids, the hardwood floors, three bedrooms. Unfortunately, one of the three? Smaller than your closet. And there were a few other small flaws. Like the kitchen? Old, but without the charm. And without the dishwasher. And without a few other major things. But! I found it! Affordable three bedroom! Fast! Ta da! Bird in the hand! Yes, this one!

My agent might not find with my speed (who can? I met my husband online! I'm a super searcher!) but he does know real estate. First, he said, you have to sell your own adorable little house. So, with his help, we quickly did. But in the course of those short weeks, someone else got our Lincoln house. Sold. I panicked. Now we had a buyer for our too small house and nowhere to go but limbo. For several days, maybe two weeks, I turned myself into knots. My husband likes to tell me, "You are a twister." Even more than a finder.

Finally, I found the place we call home now. The minute I saw it, check marks went Ding! Ding! Ding! in my head. Yard, bedrooms, kitchen, a bathroom to lock yourself away from humanity. Check check check, ding ding ding! Better than the Lincoln house? Yes, except for one thing. This house fell within the behemoth school district. Not the small, warm, friendly, cozy, Mayberry district of the Lincoln House, just blocks away. Still, Peaches would have room to grow past two feet tall in this house, she would have a room with a closet instead of having a closet for a room, and we could make the numbers work before we landed on the street. Sold.

Flash forward a few months: Rooster gets a diagnosis. And, guess what? Turns out that the behemoth district? It has services. Lots and lots of services. The cozy district I wanted so badly for my kids? They are the ones who had missed his diagnosis completely. They would have offered my boy no help. Funny how some things do work out for the best in the long run despite twisters and their panic attacks.

Lately, I keep thinking about the Lincoln house for solace. See, I've been wanting things again lately. I've been reaching for things, good things that seem like a pretty good match for our family's needs despite a few small flaws. But I haven't been getting those things I want. And I feel on the brink of panic, fearful of outgrowing my shell or winding up in the streets.

Breathe, I tell myself. Breathe, and turn down Lincoln Street. See? That house stands as a symbol, if you choose it to be one. It was a good house, but something better came along. Something that turned out to fit better. Something with unexpected bonuses. It just took time.

I'm letting go of Lincoln houses, and trying to be patient.

Remember Me?

2010-10-24T20:14:00.000-07:00

Oh, wow, how I have missed you.

You have been on my mind, though. Out of touch doesn't mean forgotten.

I'm working, writing, reading, reaching, teaching, trying, crying, growing, sowing, going, spinning, grinning, thinking, thinking, thinking. I'm up early and up late, I'm trying new things and trying for new things, and I'm very, very, very me lately. I think a lot less about autism and a lot more about autism. The struggles change, the struggles stay the same. I never knew how MUCH this journey would be, and I'm not sorry one iota, but my hands stay full. How are you?

How ARE you?

All around me, so much life. A friend at long, long last gives birth. Another friend at long, long last conceives. A dear one has not one baby but two miracles who overcome odds that are hard to describe, hard to imagine, very hard to overcome, and guess what? Healthy! Take that, odds! Way to go, K! I thrill for the growing families, I celebrate the familyness everywhere. And I still swallow little lumps that our family continues to do everything the hard way. I wouldn't mind a day that went smoothly, I admit it. But we have good moments each day, and those I grab with gusto.

Roo lost two teeth this week. Peaches told me, "I'm falling in love with R." Roo got 11 out of 12 right on his first spelling test. Peaches decorated a cardboard box with "jewels" and beamed with pride. I'm sitting here searching for more to add to the list and then I realize actually that list satisfies me right now. That's the good stuff.

I lurk all over the blogosphere. I love reading all the kiddos out there. I love learning that one little guy up north from me played his heart out with his brother for few minutes, tearing up the house but not bothering his mom one bit because she knows this is the good stuff. I love knowing that one little guy from my home state found the bike that works for him and also maybe some other tools that seem to be making life easier at school and home. I love knowing that some of my favorite bloggers are taking the show on the road, publishing here and there and everywhere. And for those whose struggles have been tougher of late, I've been sending out extra good thoughts, extra good wishes.

Wow, it's great catching up with you. We can't let so much time pass between visits. Seeing you boosts my spirits every time. Already I'm looking forward to our next little chat like this. Really, let me hear more from you, too, okay? I mean, HOW are you?

The Daily Planet

2010-10-19T20:49:00.000-07:00

Where have I been? It's a good question, to which I have only inadequate answers.

I have not, however, been in Metropolis waiting for Superman. We all know I am not that naive. He ain't comin'.

Fortunately, though, I did get a chance to go to the documentary with my blogger friend, and as a special needs Mama, I just have to state the obvious: I don't know anyone in this community who believes Superman is coming to make schools the places that they should be to properly include all kids with special needs. Not Superman, not the government, not Oprah, not a miracle.

As a teacher, I say to you: Our public schools are broken. Our children are not. Our system is flawed, but our children are beautiful. We must do what we can for our kids, despite the fact that it's overwhelming, that there is no map, no clear destination. As a teacher I say to you that our children are more than just our future. They are right now. They need us. As a teacher, as a mother, as a voter, I am not sure what to do, but "nothing" is not going to cut it.

Now, in case you've recently been under kryptonite, Waiting for "Superman" is Davis Guggenheim's look at our public school system and how, among other things, a handful of heartbreaking families struggle to escape sure catastrophe (their local schools) by hoping to win the lottery that is the charter system. Having taught in public and private schools, and having observed charters, I wanted to see this film once I heard the buzz. I heard words like "depressing." I heard assessments like "beating up teachers." I heard "indictment of unions." I heard, "Public schools suck." I have a child in public school. I have a child in private school. I have an interest in them attending a nearby charter school in the future. I visited the first KIPP classroom in Texas while serving in Teach for America. I needed to see this film.

One of the film's protagonists explains his own realization that no Superman would come rescue the disaster public schools have become, and I believe that is true. The overall situation is dire, and it is worse than dire overall for kids who have physical, emotional, or developmental challenges.

But no film is perfect. Not even documentaries are completely objective. You can't tell the whole shebang of education in the length of a feature film. I appreciated this film and what it shared, I think it's something you should watch and discuss, but it is not an A to Z picture.

As lousy as the conditions are in schools today, as horrifying as the system is that gets me writing late night letters to the White House on their web site, what school really boils down to on a daily basis for most children is teachers. Good teachers make for good learning. I know good teachers. They aren't all in private schools. They aren't all in charter schools. There are teachers who are heroes. For many children, a teacher is as close as they will ever come to Superman. I don't want you to see this movie and think all teachers contribute negatively to the tragically unheroic system. I don't want anyone to believe teachers got us into this mess or refuse to get us out.

And the beautiful, heroic kids in this film have families that have their backs. I am deeply thankful for that. But that is not the story in every household. Want to know what systems are as torn, twisted, mangled and maimed as the school system? (No, I'm not talking about health care, but that was a good guess.) Families. Let's say Education Superman made schools stronger, healthier, cleaner, safer, more resourced, and well staffed. So then all our kids would get good educations, go to college, thrive? Even the ones who live with challenges like homelessness, domestic violence, illness, substance abuse, neglect? We'd need Family Superman, too, wouldn't we?

Schools have increasingly hard jobs in increasingly hard and complicated times. I don't have any answers, but I absolutely plan to keep asking questions. Why is the public school system broken? Why does government get it wrong over and over and over? How can we support teachers who make a difference? Where can we find the leadership we need? And why do we consistently fail our most vulnerable members of society? Are unions really the problem? Are charter schools really the answer? What about kids with special needs?

We don't need to find a Superman or Wonderwoman. We need a nation of them.

Ain't We Lucky We Got Em!

2010-09-25T08:19:00.000-07:00

Jillsmo, you took the UG out of my UGLY week, giving me a blog award that I don't deserve but will gladly accept because I never win anything and a girl needs a little something when her week smelled like the carpet in the YMCA locker room.

"And, now, I will do my duty as award recipient and follow the rules, which are, as follows:"

Rules for winning this award

Thank and link back to the person who gave you the award.
Share 7 things about yourself.
Pass the award along to 15 other bloggers who you recently discovered and think are fabulous.
Contact the bloggers you chose and let them know about the award.

Seven things about Rooster's Mama:

1. I am working on getting my administrative credential in Education through Johns Hopkins U and the International Society for Technology in Education.

2. I want to write a book.

3. I have been dreaming about people lately only to wake up and find out something very important happened in their lives. I find that not at all cool or interesting but just creepy, and prefer to dream about Ben and Jerry's Cherry Garcia lowfat frozen yogurt with full fat hot fudge on top.

4. Lately I've been getting up at 5:15 to meet my neighbor and get in a power walk before school. (Before school? Before 20 million things. Before the marathon called our days.) Even writing that I "power walk" and "at 5:15" sounds weird to me. I really do that? Crazy. Doesn't sound like me at all.

5. People like to talk about my hair. Not me, other people. Some people worry about my hair being big and wild and crazy, and get frustrated by it. Not me, other people. Some people say it's really sad that it's getting way too gray. Not some people, just me actually. Some love it and stop me in the airport or whatever, and that's pretty cool. Okay, I've exhausted my thoughts on the hair thing, but someone else will bring it up today, guaranteed.

6. I miss blogging. I'm too busy. Right now I should be ashamed of myself for taking the time to blog. But I'm not. I am hurrying, though...

7. On my next birthday I will be 40 and for the first time ever I want to have a party.

Passing on the blog:

I LOVE all the bloggers I read, or I wouldn't read them, so I pass this on to ALL 45 of you! You are all versatile beautiful writers and I want to know 7 things aboutcha

That being said, I want to point out some blogs I just lately stumbled on, thanks mostly to following all of you around the blogosphere through your blog rolls, etc. I figure if I just found them, maybe others haven't seen them yet, so here are some blogs I added just lately:

http://trydefyinggravity.wordpress.com/

http://entemporada.blogspot.com/

http://www.followingelias.com/

http://elizabethaquino.blogspot.com/

http://williamhorberg.typepad.com/william_horberg/

Party Hats Come in All Shapes and Sizes

2010-09-19T18:27:00.000-07:00

Today we decided to take both kids to a birthday party.

You might ask me, "How did it go?" But there is no simple answer. There are, in fact, many answers. Ever since the word autism came into our lives, I have as many perspectives on events like birthday parties as I do hats to wear. It makes me feel a little dizzy and schizophrenic. I see each birthday party with the eyes a mother of two, a teacher, an OT, a behaviorist, of just plain old anxious me.

The birthday party was:

Fine. The birthday girl's family is adorable, and they have a lovely home. I managed the expected and unexpected obstacles with finesse, other kids melted down as much or more than mine, I had some adult conversations, some people barely noticed us, I remembered an alternative treat for the boy that pleased him, and no one got hurt. Wheew. I'm tired, but all-in-all, not a bad day...

Disappointing. It reminded me that no matter how far we've come, the other kids have come farther, and no matter how hard we work, we have so much more to do. My boy pushed a kid, called a child a "loser," flipped out when the face painter closed up shop before he got his painted, and screamed at our hosts, "I WANT A GOODY BAG! NOW!!!" My daughter lost her shoes, stuffed herself full of sugar, and instigated an argument with her brother the minute we got in the car to head home. Inside the goody bags? Contraband. Uh-oh... who knows what was in that candy Roo gobbled up before I could stop him, but it said, "Made in China" on the bag, and nothing else.

Terrific. I am so grateful. I know too many people for whom going to a birthday party is impossible or unthinkable. Every time I read the news, my blog reader, or Hopeful Parents, the shame I feel over my self-pity grows and grows. We had a beautiful day to be together and be with friends. Many of the people there offered us support and understanding, and I feel so appreciative.

Therapeutic. Roo could bounce in the bounce house, swing in the play room swinging chair, and pet animals at the petting zoo. A ROOSTER walked right up to him, so purposefully, I kid you not! Hey, with that kind of therapy, we didn't even feel the need to drive to horseback riding therapy afterwards... a good thing with temperatures in the 90s.

Just another day in the life of the Rooster's family. Ups, downs, smiles, frowns, screaming, hugging, fighting, kissing, trying, learning, teaching, working, growing, struggling,wondering, lather-rinse-repeating.

UnStill Life

2010-09-18T08:28:00.000-07:00

My four-year-old NT girl is in the bath as I type this. I'm only 10 feet away, on my bed, and can see her playing. "Mommy?" she asks. "Do you love me no matter what, or only if I have good behavior?"

The love, I assure you, is unstoppable. The fun, though, as I explain to Peaches, is much bigger when all our behavior is good.

And where does she get these questions, questions that pile on me lately about where babies come from, why people go to jail, what happens after death... I have typed only one sentence, that first one at the top of this post, so far, and realize I've never been able to blog when my kids are awake, but my night's are filled with schoolwork (theirs AND mine), and yet I hate to neglect this place where I come for my sanity and catharsis.

The phone rings. My husband, at Children's Hospital with our six-year old son who has autism, tells me I handed him the wrong prescription this morning on his way out the door and he's hoping I can send a scan or photo of the one he needs for our boy's blood draw, ASAP. I set aside my computer, scramble for the camera, the script, the card reader... How did people survive without ubiquitous computing? In 5 minutes, thanks to numerous gadgets and some of my husband's charm, my husband has things underway at the hospital to check up on my son's blood...

Peaches climbs from the tub, drips her way through the house, asks to be held like a newborn, helps me make a cheer up sign for her brother, refuses to sit more than six inches from me as she devours the opportunity for undivided attention.

The boys return, and before the key unlocks the front door my boy makes it clear that he NEEDS to bake a pie. URGENTLY. He has had pie on the brain for days, so I prepared last night, stealing away during ABA to stock up on GFCF ingredients from two separate markets. Sadly, real GFCF "pie" is beyond my patience and skills as well as the inventory of both markets, but I know he will settle for "crumble." With both kids as "helpers," we manage to whip up apple crumble in about an hour, leaving the kitchen sorely worse for the wear. While it bakes, we eat carrots, sandwiches, chili, lemonade. Finally, the timer dings. A boy demands a melted marshmallow on his "pie," and a Peach opts for ice cream. In the end, it's really only these toppings they like. The "pie," or crumble, tastes too healthy for their liking. I end up eating more than my share. They tear through the house grabbing toys, wearing my very favorite blanket in the entire world over their heads as they play ghost, building structures on the coffee table, laughing, arguing, goofing around.

It's barely afternoon. The house is a wreck. I realize no one brushed their teeth this morning. The TO DO list stretches long and foreboding... I pick up my netbook, with a blind eye to all else and a firm refusal to worry about blood panel results, and resume writing this, the formless blog post in front of you right now.

And with tremendous trepidation I confess to you, brazenly, that I feel happy.

This is how one family with autism rolls.

Read This: It's Urgent

2010-09-14T17:53:00.000-07:00

The world stopped today.

Well, at least, I read something really, really, really good. Maybe the world just paused a moment. But for me it felt big.

Really I should talk about worlds, not world. My work world -- in which I am working on an administrative credential -- felt like it collided with my home world, in which I am the mama (read: fierce advocate) of two children, and one has autism.

Usually, I do not care much for my worlds colliding. I have several unwritten posts littering my head and heart about how those collisions shake me. But today, I read a blog by an educator I admire, a blogger in my Personal Learning Network. I admire this man, a principal, and recently decided to borrow one of his ideas. I appreciate the way his professional blogs get personal, give glimpses into the goodness of his character. The idea I contacted him about, which he shares willingly, has to do with having an Identity Day at school to celebrate the identities of everyone. Everyone. Yeah, I know, right? So I am a fan.

Today I opened his blog and found something that you need to read. I don't care what you do for a living. I don't care what kinds of kids you have. I don't care what world you live in, because his blog should be required reading for voters, and anyone else with a pulse. It shows simple beauty, it shows leadership. It's a world with which I can identify. Enough about me. Please, right now, go meet George, Principal of Change.

http://georgecouros.ca/blog/archives/1180

Cruelest Month

2010-09-07T21:11:00.000-07:00

I am no fan of the ninth month. Anniversaries of loss, birthdays of those I've lost. Transitions, tuitions, decisions. Chaotic weather, crazy traffic, confusing paperwork. Lists, chores, to dos. Holidays I never manage to properly celebrate. {guilt} Changes I can't control. {anxiety} People hurling toward me 200 mph from every direction faster than I can duck and cover, with a kaleidoscope of needs. {stress} Attitudes. Dramas. Blech.

And so I have this very tiny, itty bitty, teensy weensy scrap of a plan.

All I can do to face September is this:

Try.

It ain't much, but in this cruelest month it's all I got.

Back Atcha

2010-09-04T21:39:00.000-07:00

Dear People We Haven't Met Yet,
When you meet my son, the Rooster, you might like him and you might not. Fair enough, to each his own. But if you decide you don't like him because you make some snap decision devoid of sensitivity and full of assumptions before you even give him half a chance, and then you make no effort to keep your opinions to yourself, then I would say turnabout is fair play; Here is why we won't like you, either:
Clearly, you aren't very bright.
You have bad taste.
You are impatient, and you lack style.
You know nothing about autism, learning differences, or, well, people. Learn a little something, why don't you.
You are funny looking.
You are arrogant.
You hurt our feelings.
You are a dime a dozen; you people must be like bunnies or something. Borrrrring!
We are way too cool for you.
You have NO sense of humor.
And, as my high school buddy used to say back in the South, "We ain't got no time for you!"

I'm sorry, but my Rooster is undeniably one highly likable fella, if only you give him a chance. And you can be sure I can see your bad attitude and raise you, too, if you're talking about my baby.

Vigor

2010-09-02T20:51:00.000-07:00

I don't have a full plate. I have an exploding buffet, balanced on my head, and I'm spilling. TOO MUCH.

I have friends I miss, friends I am worried about, and I want to call them. I'm sick, stuffy, sneezing, coughing, and not calling anyone. My husband is out of town, school has started, technical difficulties multiply like fruit flies.

So I do what I do in the crazy spaces. I grab the journals.

Do you have these journals? Of when your babies came into the world? I wrote letters to my babies for several years. I wrote to them and told them all the littte details from our family time. I quit around the time of the autism diagnosis. I quit because instead of writing journals, I began to obsess on reading everything I had written. It consumed me for a time. I was hunting my love letters to my son for clues as to why, when, and how autism happened to us. I grieved over the entries' references to torticollis, sleeplessness, colic, immunizations (not that I think they caused my son's autism), grumpiness, feeling different, doctors, tests, worry and anxiety, the feeling even when my son was 8 weeks old that things just were not right. I scoured the journals and indicted myself for not figuring things out sooner, not doing more, not being a better mother.

That is not why I turn to those journals now. Two and a half year post diagnosis, I find myself in a new place with autism and with parenting, and with both my children.

I am coming to a place of acceptance that I am all done having babies. Now that Peaches is wearing 4T, I realize soon there will be no more "Ts" in my clothes shopping soon. My baby girl practically runs our household. My boy starts first grade soon. I am 39. Our family is complete. We've given away everything baby. I turn to those journals to remember the joyful times of babies in the house. I turn the pages to bring back the smell of baby, the coos and hiccups I wrote about with such joy in the good moments, to remember that I did take time to celebrate, to wallow in the happy moments.

One coworker asked me over lunch about these crazy weeks of getting back to school, juggling both kids' crazy schedules and needs, and behaviors. While we all laughed at my ridiculous tales of dramas and chaos, a woman chimed in: "Yeah, well I remember you about a decade ago doing lunch duty going on about if only you met Mr. Right, and all you wanted was to find a great husband, so...." And I remember that too. And I don't dispute, amid all my kvetching and kvelling, that all my wishes came true. One the one hand, I have everything I ever wanted. On the other, I still find things plenty challenging. I am never going to be the person who is all that sorry for complaining -- it's part of my identity! it's deity insurance! -- but I fully recognize that some day down the line I will yearn for these very days that flatten me.

As I flip through my old journals now, I treasure the references to cuddling, to firsts, to celebrations. I love that I chronicled who visited us, what my kids wore, how we laughed. I don't keep those journals any more, but I do have this blog. When I completed my first year of blogging, I found myself rereading my first posts, again like a detective, looking for evidence: were we or were we not making progress? How much? But some day I will be rereading these posts to revel in when my children still said ridiculously funny things I could put in Notable and Quotables, when they were first starting school, when they were still wearing sizes with letters in them.

My husband has an expression: Enjoy your vigors. I was thinking of that when I decided not to clean the house tonight, not to fill out paperwork, but to blog. This is where I'm enjoying the vigors, not of my youth, but the youth of my kids, right now.

In that spirit, I am leaving this is a journal letter that my future self can enjoy...

Dear Rooster and Peaches,
The days are getting shorter again, and even though the nights still feel hot often, you can feel some fall in every morning. You wake up sweetly lately, Roo's footsteps quickly sounding his rush to the bathroom before piling in our bed, Peaches asking for breakfast and attention. I love the way you are starting to do such big things independently: the way you brush your own teeth, pick out our own outfits. I love how you both ask more and more questions. Today Peaches asked, "Was is better a long time ago in the old days, or is it better now?" I love how Rooster is trying to control impulses, and feels sorry when he makes a bad choice. Roo, you asked me yesterday, "I'm still a good guy, right mommy? I'm not naughty?" I assured you that even when you make a naughty choice, you are our sweet and good boy, and that we love you a million percent. You love hearing how much we love you -- so Big!! -- and you love our kisses. You love Super Why and you are proud of learning to read. Peaches, you love attention, back scratches, music, and collecting. Mostly, you love attention. You are all about princesses and pink. You are proud and how quickly you learn, and you are good at numbers.
We had a decent summer, and I have some back to school anxiety, but I am very proud of both my boosties, and I am so happy to be your mom.
Love,
Mommy

Tis the Season

2010-08-30T19:13:00.000-07:00

Dear Teacher,

We haven't met yet, but since I'm a teacher, too, I am imagining we have some things in common. As the school year is about to start, I bet you are gathering materials, organizing supplies, and thinking, thinking, thinking. I wouldn't be surprised if you fall asleep at night making lists of things you need to do, then wake up in the morning wondering about too many administrative details to count. I bet you feel pressures in every shape and size due to budget cuts, bureaucratic red tape, reform efforts that make the local, state and national news daily, and a pile of memos clogging up your email. I can guess you feel at least a little sad to see the summer end, and a little wary of the heavy lifting that lies ahead, even if, like me, you adore your job.

For me, when I am feeling so many things at a chaotic time, it can be hard to remember that other people coming at the chaos from a different direction have their own swirling emotions that might collide with my own.

My little boy is about to be your student. He doesn't much want to gather any materials, and as hard as you have worked to gather your supplies, he isn't going to be as thrilled to use them as we would all like. He's six, has no concept of a budget or the impact of its reduction, and in fact he's more than a year behind his peers in math skills; actually, we'd be happy to see him grasp one-to-one correspondence. This summer he got his fourth pair of glasses fixed for what seems like the thousandth time, because we're desperately trying to help retrain his eye muscles in the hopes of avoiding a second surgery, and while you might have concerns about his reading and writing being below grade level, we are simply blown away by how tremendously far he has come through constant effort that only increased since school let out in June. While he enjoyed his summer time, he didn't exactly go on vacation -- he did tutoring twice a week, ABA behavior therapy five days a week, social skills classes, and day camp. He learned from every single thing. This summer our boy worked diligently to learn lots of important things, like how to ride a horse, take turns, identify coins, hold his temper, draw pictures, play board games, and even play some sports, and he is starting, very gradually, to learn to swim.

We aren't helicopter parents, we are just a working mom and dad trying our very best to raise both our children and help our son on his journey with autism. And as fall approaches, we think about the coming year throughout our days, too. We are watching the calendar with anticipation just as you probably are. We wonder if we are ready. We wonder if we've done enough to support our son, knowing he will start off behind. We wonder if we prioritized the right things, and if we've let him have enough room to be himself. We wonder about you, too. We wonder if you will see our boy, beyond his diagnosis, and how you will feel about including him in your classroom. We wonder if you will see how much we have in common as we head into fall, all a little nervous, all wanting the best for the year ahead, but all with our own backpacks full of needs, concerns, wishes, and fears.

Sincerely yours,

Rooster's Mom

Only

2010-08-29T19:54:00.000-07:00

Our little girl spent a week with her grandparents, her first time away from home without us, giving us a week alone with our boy for the first time since adding Peaches to our family. She came home Friday after reportedly being on excellent behavior all week, and we were thrilled to get her back.

What a strange week it was while she was away, and how revealing.

When our boy has our undivided attention, he charms us silly. Without a peer around, he has no conflicts. When he doesn't have to share, he has amazing manners, all pleases and thankfulness. When he's getting the things he wants, the word "no" disappears from his vocabulary. When his sister goes away, he speaks of her with tenderness and longing. Wow.

When his sister returns, of course, some things go back as they always were, but even that brings surprises. How is it that I am still shocked that my son has autism? How does it still catch me off guard? Because once his NT sister, two years younger, shows up at is side, a contrast is inescapable, especially as we hear how Peaches spent the week doting lovingly on her baby cousin (two years her junior). And with a peer around, our boy has conflicts - oh boy does he. He finds sharing a huge challenge. He screams "NO!" Compliance evaporates. He says "mean words."

More than anything, I am happy to have everyone together under one roof again, and I'm so grateful to my inlaws for hosting our littlest for a week, but I am also processing all this transition.

First grade starts in two weeks and I'm scared.

Falling

2010-08-22T16:52:00.000-07:00

I don't want to talk about the end of summer and the back to school season, but there really isn't much choice. Tomorrow the faculty return to work at the school where I teach, and while I never did have a vacation, I did work days an hour shorter than usual, and I will miss that as I resume staying until 4:30. A week from tomorrow, Peaches starts her last year of preschool. And two weeks after that, the Rooster starts first grade. So, denial or not, here comes transition season.

Verklempt.

We have had some firsts in these parts. Right now, my little girl is away from home for the first time. She and her grandparents are taking a trip a few hours away to visit family for most of the week. We left her today, and as I type, I am waiting to hear that they arrived at my brother-in-law's house safe and sound after their four hour journey. That waiting thing can be blamed on the poor quality of this post... I'm half here, writing for distraction.

I am also trying to distract myself from my stress of being a student again. Six weeks ago I started a one-year program to earn another credential, and I turned in a big paper today, with another big paper due on Friday. These are very rigorous courses and I love them yet find myself counting down each week; 46 more to go. All the writing for my credential can be blamed for the scarcity of my posts these days.

This past week, my husband took the kids to his parents' house for several days while I got some of my work done. It was an unusual week for me, for us, but a good one. My husband's parents are wonderful grandparents, and they all had a good time hanging out together, swimming and playing, and I cranked out some serious business. When I went to join them yesterday, Rooster had learned a bit more "swimming" (though he still wears his floaties) and I noticed some better impulse control, some leaps in language. All these firsts can be blamed for me feeling a little more emotional today, a little mushy and sentimental.

So I'm pointing my finger and placing blame every which way, but the real truth is: We're going back to school, and all the transitions freak me out. I feel like I'm falling down the rabbit hole.
Just saved myself $150 and an hour of therapy. Whew.

Good Times for Everyone

2010-08-08T16:13:00.000-07:00

Lately I've needed a good laugh.

Thankfully, I know my way around the blogosphere.

Like music? Enjoy a snarky sense of humor? Need a good bookkeeper? Quote the Daily Show much? Ever accidentally whack your kid with a frying pan? (Well, maybe not that last one...)

If you haven't already, check out http://yeahgoodtimes.blogspot.com/. Good place to laugh and make a new friend.

What Next?

2010-08-05T21:08:00.001-07:00

Recently I took Peaches to the park to play with her best buddy and his siblings while Rooster was off at day camp. "How is Rooster?" asked the sweet dad on the play date. "If you don't mind me asking, what is the prognosis for Rooster?"

No, I don't mind being asked -- I appreciate concern about Roo -- but I don't know what to say, exactly, either.

We have many people who micro-"ist" our boy. By that I mean that we have people who deal with his this issue or his that therapy... they touch his trunk, his tusks... but I don't know how many really deal with the whole elephant in the room of where our journey might take us. Then again, did my parents know when I was six what my future held? Do any parents have a prognosis for the future of their kids? You have kids, then you hold on for dear life... you wait and see where the journey takes you, I guess. Sometimes I wish I had a crystal ball...

Some of the ists in our life have tried to prepare us for the possibility of thinking about group homes one day, while others talk like they assume Roo is going to find some special Bill Gates or Steven Spielberg talent and take over some sliver of the world. And then there are a lot people who fall somewhere in between...

Lately, Roo has taken to asking me, "after first grade, THEN can I go to college?" I overthought this perseveration for quite a while before I smacked my forehead with my palm and realized that when my boy gets stuck on something, a movie or a book can almost always be blamed. You probably got it faster than I did, since I confessed to you last post that I am so not a movie girl, but Toy Story 3 is the origin for the college obsession. (I love when my boy asks, "When I go to college, can I come home and watch TV? Soon can I go to college?")

Well, we might not be ready for college come fall, but there are some big developments and a graduation of sorts underway. First, our boy is VERY GRADUALLY, and haltingly, and with lots and lots of support, reading his short little Open Court first grade books. Let's hear it for his AMAZING tutor, Ms. S. Wow, it's hard, and it's wonderful. I weep a lot. Roo gets exhausted a lot. We plod forward. Twice a week, he sweats and struggles and earns his giant sticker for tapping and blending, for sounding out, "See Tim spin." Second, the talks have begun to plan a graduation from ABA in-home services. Wheeeewwww. No, his behavior isn't perfect, but we might have squeezed as much juice as we can from this lemon, so to speak.By Thanksgiving, we should have 10 hours a week freed up, after almost two years of "helpers" and programs. Next up, social skills classes.

Math still mystifies our boy in a way that is beyond troubling. Numbers seem to have no significance to him. His four year old sister often tries to whisper the answer to the math questions we offer him or otherwise throw him a hint as subtly as, oh, a great big red hickey. Today I gave him a little word problem to ask him to add two plus two, and he goes, "Three! Six? Umm, maybe 10? Can I have a snack? WHAT?!" Meanwhile Peaches is all but thrusting her four fingers in his eyeballs.

At camp, the Roo has a shadow, and she tells us he has been learning to play pickle and kick ball, do hopscotch, make Fortune Tellers (aka cootie catchers), and step dance, among other things. A few days I have needed to pick him up later than she can stay, and he has managed the last half hour of the day okay without her there, just hanging out with other kids his age.

Last weekend, we discovered a place in the area that does FREE therapeutic horseback riding, and while Roo isn't exactly The Boy Who Loved Horses, he did pretty fantastic riding on Mark, the sweet white horse, with the help of three expert volunteers. After, we got to swim in the pool at the ranch, and while neither of my kids can swim yet, it's one area that our little guy is making progress faster than his sister. He still wears his floaties, but he's holding his breath and going under, blowing bubbles, practicing strokes and kicks a bit... he's not afraid of the deep water, and he's making progress.

I have no idea what my son's long-term anything is, and I'm not going to even try to predict tomorrow. The words tomorrow and yesterday still confound him, and he has a poor sense of time. But I am very proud of him, and I love watching him grow, change. I think about his "developmental disorder," but more I think about how far he has come. A year ago, who would have predicted my boy would be sitting straight and tall as instructed as he takes a horseback ride, reading to me proudly about spinning Tim, wanting to master hopscotch, holding his breath underwater?

The long term prognosis for the rooster is that his mama is going to love him.

Moving Pictures

2010-07-25T20:18:00.001-07:00

I have never been much of a movie enthusiast, to say the least -- I might see 4 films in a year. Why? (I am asked this a lot here in Hollywood, with people's mouth agape in horror.) Beats me, really. Partly I prefer to read. And that is probably tied to my dislike for the emotional entanglement and the too visual environment of big screen films. I prefer to use my imagination, pace myself, skim when I need to, come back again when I want... I don't avoid hard topics when I read, but I do when I watch movies. I don't know how many times I've read (and wept through) The Diary of Anne Frank, but it took me several years to get myself to rent Schindler's List, and I made frequent use of my pause and fast forward buttons. I'm grateful to own the a copy of Anne Frank, but glad I've forgotten much of Schindler's List, which I never plan to see again.

I have read many books about autism. I confess that sometimes I've trudged and sometimes I've skimmed the most painful ones, and sometimes I've had to read through a curtain of tears. Since the Rooster's diagnosis, though, I have not watched any film depictions of autism. Of course, there aren't that many, but I've also been conscious of my choice.

My husband, on the other hand, has an entirely different relationship with film, and he works in the field. He has watched Apocalypse Now many times, and tried his best to foist it on me when we were dating, yet somehow we managed to stay together and get married anyway! He worked on the movie Saving Private Ryan, and he's hard to choke up in front of a screen. However, last week he came home from work not quite himself -- not quite as mellow and chill as is his natural, beautiful, even keel way. Of course, I probed. Turns out for work he'd needed to screen Rain Man a few times. "You know," he told me, "I could see some of our boy watching Dustin Hoffman, and it hurt to see." My husband is steeped in optimism, and he has tremendous faith in our boy and his potential. He said he didn't look at the movie and fear for Rooster that he might face the same particular set of challenges of the character or the real man who inspired the film. It's not about that, and it's not about judging the character or the movie's inspiration. Instead, he ached, I believe, for the realness of the story, and, he told me that he grieved, "for the what might have been, for anyone." Later that night, before bed, he brought it up again a different way. "Sometimes I think we forget that we always carry it with us, it's always there every day, you know? You think you aren't thinking about it and then you watch Rain Man and you find yourself shocked that you want to cry, but it's always a part of us underneath the surface." I guess that's why I don't watch many movies at all ... I have plenty of over-exuberant empathy in a day without adding that, I have too many things, not just autism, just beneath the surface that I carry with me. I'm glad J doesn't carry around as much as I do.

I think of Apocalypse Now and Saving Private Ryan and Schindler's List and Anne Frank as tragedies. I don't think that way of autism. I think of it as one kind of reality, which has countless different faces, different experiences. Would I eradicate autism if I could? I am sure some people will be offended if I say I would be okay with that. But autism, which really has been sucky in my overall experience, has undeniably given us gifts as well, and our boy is a joy to know, so I do not think of his autism as a tragedy.

Rain Man might just be a movie, but autism is a reality, and that's why I think J felt so moved.

Excuse Me

2010-07-23T21:00:00.000-07:00

Taking the time to write this post causes me guilt.
Not taking the time to write this post would cause me guilt.
When stuck between a rock and a hard place, I write.

I faced a similar conundrum today. After two days of being part of a jury selection process, and two days of child care DRAMA that resulted in missing ABA for the Rooster both days, I found myself in the final minutes of court. It was after 4. The natives were restless. The prosecutor and defense attorney accepted the jury, and I had not been among the 12, though I was among those in the box. The 7-business-day trial would be able to start on Monday once an alternate was in place. The judge met counsel for a fast side bar, came back, announced juror 31 could be the alternate and we could all go home. As juror 31, I'd been dreading a moment such as this, and finally piped up in an 11th hour like I was in a movie or something. "Wait! Your honor, may I say something? I already explained this in the jury room and they told me to tell it to you should the need arise. My son is six and he has autism. The state provides him with therapy he needs. It's called ABA. And I have to be there to be part of it. If I am on jury duty, he will not be able to have his therapy, and he needs it."

The judge called the attornies to sidebar again. He returned, gruffly said, "Juror 31 is excused." I paused, so he said it more firmly again. "You are EXCUSED, juror 31."

All day I'd been imagining being excused. I imagined trying to resist smiling, trying to look serious as I exited. I'd watched others leave celebrating and considered that tacky and disrespectful. Instead, I slowly drooped out of the courtroom.

Not taking the time to do jury duty made me feel guilty.
Taking the time to do jury duty would have made me feel guilty.

I didn't expect to feel deflated by being excused. Quickly I did a gut check: I didn't like the idea I was "playing the autism card." Everything I said was true, but should autism get me something other people want? Or get me out of something other people don't want to do?

Mostly I felt confused.

Why did I cry in the courthouse alcove? Was it just this guilt? Was I ashamed? Embarrassed? Why did it make me so sad that in our group of about 20 people, another woman leaned over to me and said, "My son is ten and he also has autism." Why did it make me so emotional that another potential juror being excused as well grabbed me and hugged me in the badge-scanning line?

Why did I need to call my husband from the parking garage to unload it all to him before I could manage to drive? Why did my husband tell me he felt a similar feeling, to a lesser degree, when he did the exact same thing in a courtroom a few months ago?

We don't particularly WANT to do jury duty, but at the same time we wish we didn't have a free pass for such a challenging reason. It's hard to lay bare our issues in a forum like a courtroom. It's hard to say that we can't keep up with some responsibilities that others can because our plates are too full.

I told the nice stranger who hugged me that my boy is doing okay, he just needs the structure and support of his therapies. I didn't want her to think we were facing bigger challenges than we are; I didn't want to exaggerate, and I wanted to let her know I am proud of my son. "He's going to be okay," I said.

"I am sure he already IS okay," she told me. "He has a mother who works hard to take care of him. He is your boy. He is okay. He is okay." Another woman had appeared quietly from nowhere. "Things can always be worse," she said. "Everyone has challenges. They come at different times for everyone. Don't feel bad."

I couldn't keep my eyes dry.

I have more questions than answers about why my day made me so emotional. The important things, though, that I take away are these:

Maybe I shouldn't have taken the time from my homework to write this muddled post, but I feel better now that I did.
Maybe I shouldn't have escaped my civic obligation to maintain the Rooster's support programs, but now that I've reflected on it, I know that I'm glad I did.

I hope one day doing jury duty will be no big deal for our family.
I like to imagine Rooster serving one day, too.

Balance?

2010-07-21T20:25:00.000-07:00

Here is what passes for balance at our house.

The better that my son, my Rooster, does in overcoming behavior challenges associated with autism, the worse my neurotypical daughter behaves. For her, two was not terrible. It was the last time I remember thinking of her overall, general behavior as darling, delicious, delightful. She has plenty of good in her, but lately her choices? Rotten. Three was a year of tantrums and "no." Four is breaking me at the knees. On her good days? Roo has setbacks.

And that, friends, is what passes for "balance" at Rooster Calls.

Notable and Quotable for Sanity's Sake

2010-07-16T19:06:00.000-07:00

Intense. We have no unfocused time. Even play is very purposeful. That is not to say there is fun; we just take no time for granted. We work on knock-knock jokes on our commute, laughing over and oven at "Lettuce in, it's cold out here." I am in a one-year credential program now, wondering if I'm crazy. But we manage, centimeter by centimeter, believing we are doing the right things for our family right now. And when it's really arduous, I stop and feel the gratitude that we are even, for this day, in a place where we can try to do this. Two years ago there was no room for trying this. And I always ask my kids, "What is the most important thing?" And they chorus, "To try!"

Notable and Quotable:

Roo: When I go to college, can I come home and watch TV?

Peach: Daddy, a boy in my class stuck something up his nose and couldn't get it out.
Daddy: Did a doctor have to get it out with an instrument?
Peach: Yes. Was it a tambourine?

Me: Who did you play with today at camp?
Roo: Miss Jessica.
Me: Roo, you should try to play more with the kids.
Roo: I never thought of that!

Roo: Mommy, after first grade, THEN can I go to college?

Missing

2010-07-09T18:58:00.000-07:00

Whenever I am away from my children, I miss them. Sure, I need breaks from them, and crave a little time to myself once in a while, but my children grow and change every day, and I hate missing time with them. These difficult and beautiful children have become my addiction.

On the other hand, I will guiltily admit that, when I am with my kids, I miss some frivolous things. I am not talking about necessary things, like sleep, that I miss with a deep and abiding yearning, but about silly indulgences. I know this makes me seem selfish and ungrateful, but it's honest. I miss watching the news. Sadly, the news is too R Rated these days to watch around G ears. I miss trying out new recipes in the kitchen. J and I used to have romantic cooking dates, try sophisticated new meals or complicated Sunday pancakes from scratch. Now, we lack the time, the space and the energy, and our kids would never eat the dishes we used to enjoy concocting.

I really miss talking on the phone. I really miss that a lot lately.

My kids get nutty when I talk on the phone, competing for my attention, and I can't say the things I want or need to with them around, and they interrupt constantly, but one sad obstacle to having conversations is that I no longer have many people I can call. Many of my dear friends and much of my family live on the East Coast, and though they love me, I can't in good conscience ring them up after 7 my time, when they are heading do bed. In my own city, I have a few very close friends. I can call them. They are beautiful and wonderful, and they share and listen. They have heard, mostly face to face, all about the BIG THINGS going on with me, some to the point I feel ashamed I haven't coughed up a copay or something. For this reason, I can't always get myself to call them. I can't figure out what to say sometimes that is different from what I say every time.

I remember talking on the phone with a nostalgia that may be misguided and just plain wrong, but I miss CHATTING. I miss exchanging witticisms. I miss joking around. I miss banter, friendly sarcasm, even little bits of celebrity gossip once in a while.

I miss talking about what my friends and I saw on TV and what we cooked this weekend.

But these are small things to miss. They are nothing like being an airplane ride away and longing for two little arms wrapped around my neck.

Still, I am wondering, what small things do you miss?

One Fine Day

2010-07-05T16:17:00.000-07:00

I over-think. And I talk too much.

People ask me how Peaches is doing, and I say, "Fine!" Unless they ask for details, I leave it at that.
People ask me how Rooster is doing, and for some reason I find myself analyzing numerous variables quickly in my head, then, less quickly, rambling on and on...

I want to learn to just say, "Fine!" For one thing, that IS the social convention. People expect to hear, "fine." For another, I do think my boy is fine. He is quite a fine person and quite a fine son.

What I find myself saying goes something like this:

"Okay, I guess. I'm never really sure. I mean, I think he's making good progress with some things, but other things sometimes seem to regress. And he never catches up, of course, but he's starting to make some strides in academics... well, in reading anyway, but math is another story... that has been really, really, really hard... and his health has been mostly better overall really...I just wish that..."

See? Queen of TMI.

I think maybe when people ask me how my son is, I hear, "How are you dealing with autism?" I want to remember:
- not everything is about autism
- not everybody really wants to know
- not everything is about me
- less is more

Next time you see me, ask me how my Rooster is; I want to practice replying with a four-letter f-word that is more than socially acceptable -- it's socially expected.

Metablog - There is no "I" in blog

2010-07-03T19:44:00.000-07:00

I never would have imagined myself a blogger.

As a journalism major, I embraced writing for any newspaper section except sports, due to my complete sports ignorance, and opinion, due to my allergy to first person - though I had, of course, no shortage of opinions.

Friends and colleagues sometimes envied how quickly I could crank out a feature or a theater review, but when I became managing editor my senior year, I had to write every third house editorial, and I dreaded it. I procrastinated, and I leaned heavily on the generous support of our Opinion editor, Grant. I never kept those house edits in my clip file, because they never felt like mine, and I never felt comfortable with my voice.

I've kept a journal since I could hold a pen, but even then avoided "I."

So why is it that this blog is where "I" can be?

I've been thinking about this because my work and related studies compel me to blog, and I find myself once again feeling reluctant, shy, uninspired. What's the big deal that I have to blog about work? I blog all the time? But this blog, this is not work. And I don't feel like I write it; it writes itself. This blog is a gift a give myself. It's how I vent, breathe, share, bond.

I'm going to have to figure out how to blog in another element, and I am not sure how. The one thing I do know, though -- I don't want that blogging to crowd out this one. I have no intention of giving up my home here in the blogosphere where "I" live.

Today, Tomorrow, Beyond

2010-06-24T21:23:00.000-07:00

Today? A steaming pile of poop. I did not like this day - it needs an "undo" button.

Tomorrow? Another obstacle course.

Beyond that: Is Rooster going to be okay? Can someone just reassure me?

Can someone tell me that even if tomorrow looks and stinks like today, that beyond that are brighter days?

You don't have to believe it; I just want you to make me believe it. Sometimes I do. Today was not that day.

Some Summer

2010-06-23T20:52:00.001-07:00

As I reflect on our chaotic start to summer, a flood of metaphors wash over me. I'm drowning in bad metaphor, people. The only way I know to save myself is to purge here:

We scramble to make arrangements. We quilt together child care plans. We hand off the baton in the knick of time to get Roo off in this direction, Peaches in the other, before we go to work. J gave me this one, my favorite: "We're barely laying the track before we're rolling over it."

Somehow, through creativity and determination, amazing babysitters (of which we now have SEVEN in our arsenal!!!), kind friends, and generous family, we're juggling 3 summer camps, educational therapy, new ABA schedule and new -ists, business trips for us both, and careers. We are bleeding child care money at heart-stopping speed, but seeing our kids benefit makes us believe we are investing as wisely as we can.

Peaches and one babysitter hand squeezed us a large pitcher of lemonades from lemons off our tree, and she came home from camp this week having designed her own game. She has been full of smiles lately and noticeably less grumpy. Roo enjoyed a field trip to play mini golf with his social skills class, and brought home a daily evaluation form full of praise. They are sounding things out now and then, writing more and more. I am proud of my little ducks, and that makes it easier to endure the hours of careful calendaring, the intense commuting, the begging and borrowing, the expenses piling high.

Should I really click PUBLISH and tempt fate?

Oh, no way. If I end on a positive note the deities will punish me. Here is the down side of summer so far:

- The social skills camp for spectrum kids that we love? Practically promised to set up a carpool program. Not so much. Pick up is at 2:30. That is where the 7 babysitters come in, because I don't get home until 4. As if the camp didn't cost enough.
- So far we have no plan at all for Peaches for all of August.
- The rock star ed therapist? $150 an hour.
- Every day one of my kids has some special day, like Water Play or Sports Share or Field Trip, requiring me to do 10 extra things.
- I have vacation envy. It's just not in the cards for us to travel right now.

There, that's more like me.
How is summer treating YOU?

There is a Season

2010-06-21T18:00:00.000-07:00

So today I finally make it to my annual physical. It only took me three years to get there. The doc, who I swear I don't resent for being a couple years younger than me and ridiculously nimble in the witty banter department, chides me for neglecting my health and not racking up more copays. When I am nonplussed, she nails me. "You want to take care of your kids?" she asks. "You need to take care of yourself. You are not young anymore."

Wow. I don't disagree with a word she said. In fact, I agree too much.

What day does it happen? Your 30th birthday, do you wake up not young anymore? Or is it less a date and more a milestone -- like once your child outgrows 18M clothes, graduates to 2T, you don't have a baby anymore?

My husband laughed when I told him that the doctor drew blood I still needed, shot me in the other arm, then stabbed me through the heart with her honesty. "She don't know nothin'" he reassured me, knowing how I love a little Southern for comfort. But he's an LA boy. He also pulled out a little industry wisdom. "I was listening to Dustin Hoffman talk about how they don't offer him lead roles at his age. He said, 'So I'm middle aged, what can you do?' And his father roared, 'Middle aged? How many guys you know who are 120 years old?!' Cheer up, babe. You're still plenty young."

The grandmothers in my life lived into their nineties. Next month I will be 39. I'm not young anymore, it's true. I am middle aged. My babies will soon be too big for clothes with a T after the size. I feel funny shopping at the Gap. Sometimes, I confess, I buy from Talbots. When did this all happen?

But the truth of the matter is: I have more in my life than I ever dared to hope. My cynical preteen self stared at the board game LIFE my cousins liked to play and believed in my heart that the little plastic piece of my life would never have more than my own pink peg inside it. The day I married my husband filled me with more joy than I thought a human body could physically contain without igniting. And tonight, because of what began as an annoying scheduling snafu and a sudden change in ABA services, we all found ourselves home for the day before dinner time, so we enjoyed a special meal around the backyard table, the California golden sunlight streaming through the branches of the camphor and lemon trees. Now, our bellies full of veggies, grilled pork chops, and fresh squeezed lemonade, we are each doing our thing. Peaches rides her scooter, Roo swings on his rope swing, J sips his Pacifico and smiles at me blogging on my netbook in my PJs.

I don't too much mind not being young anymore, really. Like my mama likes to say, I earned these gray hairs that peek through my auburn mess. But my doc has a point about me needing to take care of myself. I do. We both want me to take better care of myself. She thinks it involves taking some pills, seeing one of her referrals, making more appointments, and maybe she's right. But for myself I prescribe missing more appointments, having more happy scheduling accidents, and spending time in the backyard with my family while my kids are still young.

Happy Summer.

Maybe I'm Dreaming

2010-06-20T20:15:00.000-07:00

Maybe one day I'll look back and barely remember the sleepless nights that lasted for years.

Maybe next year will be our jackpot year for our son at school.

Maybe the social skills class he starts tomorrow will make all the difference in him relating to peers.

Maybe soon we'll discover his special thing - his blissful sport or talent or interest.

Maybe if we find the right doc or -ist or advocate, they will hand us some missing piece that will make our lives easier.

Maybe some day Roo will have a best friend.

Maybe our family will disco.ver some day that autism added far more to our family than it subtracted.

Maybe we can find a different place to live where life feels more like living and less like surviving a grueling obstacle course.

Maybe I can just find a way -- hypnosis? therapy? conversion? magic? -- to change my perspective, and that will be enough, and I will not need the other maybes.

Stuff My Mother Says: Read This Book

2010-06-16T19:12:00.000-07:00

Motherhood gives me great happiness, but I am not shy to admit that the challenges we face sometimes put us in situations that bring me down, way down, where I shamefully flounder about in my inertia until something external lifts me up. Yes, I need to find a way to use something INTERNAL to lift me instead, but this week I had the good fortune to stumble on a book that served as a mighty crane to hoist me from the dumps. I got such a high from this book that, against my better reason, I must share it with those of you who might also find it useful.

This book has nothing to do with autism. It is not intellectual. I found a typo. It is laced with profanity to the point that it uses an asterisk in the title. PC it is surely is not. If I hadn't read it on my iPhone via Kindle, I might have hid it in my garage. But you know about the research on how laughing clubs in some parts of the world provide tremendous benefits to people on an emotional and spiritual, sometimes even physical, level? Yeah, you don't need to Google the nearest one or travel to another continent if you want to laugh and feel good, you just need to get this book and read it. I went from weary wallow to hysterical hiccups in under an hour. I escaped stress, fear, anxiety, and fatigue, and I didn't have to learn anything, or agonize, or analyze, or emote, or anything but just observe, relate, and laugh.

Now, if bad language offends you, or if you saw no humor in Archie Bunker or the Roseanne show, don't read it. I don't want you to think less of me.

So, the book is called "Sh*t My Dad Says." Sue me if it's a crime: It cracks me up.

I'm already writing my next post in my head, about stuff my mother says...

And I can't help but wonder if one day my kids will write something about stuff I say. It's a scary thought; I surely don't give them much funny material. Tonight I heard Peaches whine to her dad, "Daddddyyyyyyy! Mommy just keeps saying only, 'uh huh.' Every time. It's all she says. 'Uh huh.'"

Friendly

2010-06-10T21:05:00.000-07:00

Dear Friends,
I have been thinking of you. Yes, YOU. And you.
Let's take you, for instance. Do you know how many times I have thought of calling you lately? I look at the clock, do the math, and curse the time zones. I can't risk waking you, and I don't call ANYONE with little kids at 7 p.m. because I know what that hour is like. But I've been missing you lots and wanting to hear how you are.
And you... you would think living in the same city would mean we would see each other once in a while, but I look at your fb page to find out what's going on in your life. As much as I've thought of making a plan with you, I've honestly felt exhausted each time I imagined trying to keep my kids in line during a visit, and what I've just admitted makes me sad, too... am I a terrible mom?
And you... I LOVE your blog. I have starred recent posts and left myself reminders to leave you comments, but now that I do most of my reading on my phone, comments are so much harder to leave, and I just started my year of coursework... terrible excuses, and I just hope you forgive me, friend. Your blog is moving and powerful and I thank you for writing it.
And you -- I owe you a thank you card! Oh, I wrote it! I just can't for the life of me come up with postage. Soon.... thank you so much.
And you -- have I told you how happy I am for you and your big news? I really am.
And you, friend, who have been through so many trials lately. I sent you a huge energy thought the other day. Actually, I even enlisted J's help. We were driving, and we both concentrated on you, sent you some good joyful thoughts. Did you feel it?
Friends, don't hate me for thinking of you via a blog. Don't hate me period. I am pretty tapped out right now, but I'm hoping by late June to seem kind of human again.
I love ya; thanks for being a friend.

Mr. Write

2010-06-07T20:55:00.000-07:00

Cynics who avoid sentimentality? March on -- the grump is out. Come back next time. Come back June 9.

Ten years ago tonight did not fall on a Monday, but a Wednesday, and I remember that because ten years ago tomorrow my life would change forever on a Thursday night impromptu date at a divey gay bar with the man who would become my husband.

I can tell you, now that I've changed it, that I used to always use June8 as my password for everything. Before I learned about digital safety, it made sense: more than a date, "June 8" has become my mantra. My husband and I use it as shorthand. When one of us is sad, scared, worried, sick, in pain, or joyful, we can simply mention the date, and thereby share our support, comfort, love, and solidarity.

You know those melodramatic movie scenes in hospital delivery rooms? Well, in our real-life version, I breathed June 8, self medicated by repeating it over and over... My husband and I might have taken a pass on birthing classes, but he knew just how to hold my hand and invoke our magic date and help me do whatever it took to bring our child into the world.

On June 7, 2000, J was still the guy I'd just met online by searching a dating site for the keyword "writer." (Sure, he had to be a nonsmoker and live in driving distance, but my priority? I wanted to meet a Word Boy.) After scanning through about 2000 guys, J was among 7 I took the time to email, one of two I gave my phone number, and the only one that I talked to so long the battery died on my cordless land line. After exchanging what felt like real correspondence online for weeks and having a conversation so satisfying it felt like a real date, J and I agreed meet on a Friday June 9 for Indian food. But on Thursday, when he called to firm up the time and place for our plan, he caught me in a bad mood. I explained that I resented how my close friend had just called and talked me into meeting her and her East Coast visitors at a local dive bar, that I was both getting ready to go and simultaneously brooding about how to get out of it so that I would not be up so very late on a school night. The real root of my brooding? I didn't want to be tired the next day when I would finally meet J for the first time. "Don't worry about it," he told me. "Just decide to go out tonight and have fun. If you decide to have a good time, you will." I insisted that the evening had zero potential for fun... unless... unless maybe...

So, J and I spontaneously decided to move up our first date... we both went to the hipster bar that Thursday night on June 8 at 10 to meet my friend and her out-of-towners... I got to the bar first, and saw from the window when J got out of his car and walked toward the door. I knew. We had only exchanged one photo each, but I knew J the minute I saw him. I knew as he walked through the crowd toward me that I would greet him with a hug, and I knew as I hugged him that I would care about him. I knew when he held my hand that night that I might fall for him. I knew when we said goodnight that something important had happened in the 3 hours we spent holding hands, talking. I knew, and he says he knew too. Maybe so -- we have never been apart in any real sense ever since.

Eight years ago tonight was a Friday. We spent it out of town with friends and family who came to celebrate at what we loosely called a rehearsal dinner. The night epitomized what J and I describe as "usness" -- a warm gathering of good people with simple pleasures and heartfelt words. Since we were getting married out of town, I'd discovered the restaurant the way I had found J -- online. I'd found it through an intense search for just the right place by focusing on words... this restaurant was named for the fact that it is part art gallery, part book store. Ecclectic, unusual, perfect. And the perfection continued the next day, as on June 8, 2002, J and I walked ourselves down the aisle to Beatles music, exchanged vows we wrote ourselves, asked our friends and family to speak, and had his dad officially pronounce us husband and wife. A caterer we had never met, chosen for her company's name (Pure Joy) and online reputation, provided a picnic in the nearby park so inspired and delicious no one believed me when I told them how low she dropped her prices when she learned I taught children the same age as her little boy. (She also threw in extra desserts: "Teachers deserve to have amazing weddings with excellent food," she proclaimed, and I agreed!) One of my dear friends had just launched her photography business and shot our wedding for her costs only; just recently her gorgeous work graced major national bridal magazines, but not with photos any more moving than the ones she took on our simple, beautiful, magical day.

Tomorrow is June 8. Tomorrow is my favorite day, my favorite date. Tomorrow marks a decade of "usness" with the man who teaches me how to "decide to go out and have fun." Tomorrow marks the beginning of the journey toward a Rooster and a Peach.

Tomorrow I will not be blogging. I have a date.
Cynics, see you June 9,when we will resume our regularly scheduled ranting.

Happy anniversary, J. Happy June 8, everyone.

This Will Go Down on Your Permanent Record

2010-06-06T06:54:00.000-07:00

(..."Oh yeah, well, don't get so distressed. Did I happen to mention that I'm really impressed..." Sing it with me now...)

The big news around here, in my opinion, is that my kids are beginning to read. We are talking small steps, but for me it still feels like a big deal. The Rooster's incredible inclusion teacher sent home a bunch of word family cards recently with a sticky note on top that said: Rooster can read! He read about 30 words to me from the cards, though it's still pretty hard for him. He struggles to keep focused, he struggles with his vision issues, he struggles with a few letter-sound confusions (b for d, for example), but he gets there in his own time, my boy. Peaches, who watches every bit of my practice with him, chimes in, too, sounding out some of the c-v-c words, and enthusiastically writing me love notes, like "Peaches Love Mom." These things make my heart sing.

By far less important news, the school district here has a boiler plate letter they mail you when your child is not performing at grade level. We get them each reporting period, but this one, the year-end version, is different. This one says that my child is not up to their standards in reading, math, and PE, and that I should discuss the matter with him, and instruct him to work harder, because he might not get promoted to the next grade; after a serious discussion, my child should print and sign his name below. I understand it's a form letter and that they don't really expect my six-year-old who has autism to have a cursive signature, or more importantly to be able to pull himself up by his bootstraps academically. But I have to confess: I gave that cold piece of correspondence the finger -- flipped the bird right at the poorly Xeroxed, insensitive, useless piece of beaucracratic drivel. Then I said, "Hey, Roo? We got a paper from your teacher. It says here to keep working really hard in math, okay? Can you do that for me? Can we work on some math together now?" He said, "Okay." So I gave him a crayon and had him print his name, in his usual large and awkward fashion, across the form, and I sent it back, and then we got back to work on one-to-one correspondence, meaning math, not the one-fingered salute to our mail.

Peaches' report cart also arrived, and I tried to read it standing up, but found I could not -- I nearly fell over, but managed to lean against a wall for support while I snorted and snickered. I don't know if you will see the humor to the degree I did, but I have to share this excerpt with you just in case you might get a kick out of this description of my (barely) four-year-old (bossy and willful) preschool girl:

"Peaches has delighted her teachers and friends with her imaginitave stories and expressive way of recounting her stories. Peaches is a real schoolgirl. She just loves schol and the way the day is spent. She often forgets that her position is that of student because she really feels like she is her teachers' assistant. While we must remind Peaches of her role as a student, we delight in the fact that she has assimilated so many of our classroom rules and expectations..." (bold and italics mine, snicker and snort also mine...)

Only a couple more weeks, 2 more field trips, a thousand more parties, and a quarter million more To Dos, along with infinite logistical challenges, and then, ready or not, here comes summer (school).

(This summer I will be joining my kids in school, as well, as this week I embark on an on-line postgraduate credential program, and will then have a third report card coming to my house... a notion currently terrifying me.)

And a Happy Summer to you.

May I...

2010-05-29T20:13:00.000-07:00

My family has attended the same annual shindig now for times.

In 2007, we had an out of control 3-year-old not yet diagnosed with autism, and a fussy one-year-old. We had already sold our house, but had yet to find a new one, and we left the party early to go look at the place we now call home. We would have left the party early either way, though, because my kids had too many needs to make partying any fun. Our felt frayed as we met up with our real estate agent, but thankfully at least we found our home.

In 2008, we attended with our newly diagnosed 4-year-old and our toddler. They took turns melting down and having potty issues, as both remained in diapers and lacked communication skills. We stayed as long as we could before making our apologies and beating a hasty retreat, but I doubt we lasted more than 90 minutes.

By 2009, we had shocked ourselves half to death by trying and then liking having our son on the gfcf diet, which helped his digestion incredibly and his daily moods considerably, but made parties a challenge. Even though we brought along a bag full of food just for him, Rooster got angry not to have the same thing as everyone else, and he made some enemies of the other kids whose food he tried to grab and who couldn't understand his unusual language. Our daughter, 3, had developed a sudden and acute fear of dogs, and spent the party shrieking at our hosts' loving and wonderful canine. As we fled the party that year, everyone cleared a path, giving wide berth to my screaming and dysregulated offspring.

That brings us to today. The kids ate a huge meal before the party, and packed special gfcf brownies to take along. We talked in advance about the sweet doggie we would see and how we would be nice to her. Once at the party, my son, now 6, played with the other kids without much supervision or intervention, and sat calmly on a blanket listening to the band play. He only said one thing that caused me to flush crimson and do damage control. He also charmed some grownups who hadn't seen him in a long time. My daughter, now 4, chatted up the grownups, amused herself on her own playing with some toys, and never made a peep of pooch protest. Oh, Peaches had a few meltdowns over this and that - lately my NT girl gives me a harder time than her big brother - but nothing epic. Both kids swam with their dad, used the potty when they needed to, and took the news that we needed to head home without much fuss.

It might be snail-paced, hard won progress we make, but we do make progress.

Where I Am

2010-05-25T20:19:00.001-07:00

When I get angry, I can shout, and shouting soothes my fury. Cathartic crying ebbs my sadness. But being pecked pecked pecked til I leave a bloody trail of superficial wounds leaves me a kind of numb for which I know no salve.

I've been bleeding in slow drips for several weeks, but you can fill an ocean drop by drop.

It's not any one thing, and it's not everything. It's still just too much though, and I can only sit quietly and nurse my scabs.

Two Hands

2010-05-18T21:14:00.000-07:00

Even before I had children, it seemed to me that moms should get the gifts on their kids' birthdays!

Well, I don't even like receiving gifts on my own birthday, so I surely don't need any tomorrow, but I do feel a little like it's my special day, too; my boy turns six, and I celebrate the anniversary of becoming a mother.

Six years ago tonight, I had control of the TV remote, an ENORMOUS belly, high hopes, and a little trepidation. Some things have changed, and some have not. I wonder if you can guess which ones?

Six years ago tomorrow, I had a gorgeous, blue eyed, feisty, insatiable baby who wailed heartily most of his waking hours and stole my heart. Again, can you tell what has changed and what has not?

Happy Birthday, Rooster. Thank you for filling my life with gifts.

Help a Friend

2010-05-16T20:22:00.000-07:00

I got an email, friend-of-a-friend style, asking for my advice. I don't have the answers, but I know YOU might...

Can you help my new friend, whose girl has Moebius Syndrome?

"I wonder if you have run across anything regarding enteral nutrition. My daughter is tube fed on Pediasure and it's gluten free/lactose free, but I think it has casein.

I was also considering testing her for GI issues and didn't know where to start a discussion with a Dr about it.

Any advice you might have would be welcome."

Refrain

2010-05-13T20:29:00.000-07:00

Every day, it comes to me unbidden - several times, every day.
A sentence.
I wake him up for school, I walk onto his campus at the end of the day, I check on him in his room when he's on a time out...and it comes to me...
"I want my boy."
I let it be spoken in the hospital when he's coming out of surgery, when I'm on my way back from a teaching conference out of town, when he's right there beside me but seems a million miles away, a lifetime away.
I reshape the words so his sister feels included, but to me the mantra's still the same when I tell her every day, "Let's go get our boy."
The wanting is there even without the word, there so strong each time I mentally see the sign for want; I imagine my two hands clutching empty air and pulling it toward myself, emphatically.
When he is out of my reach, beyond my circle, the mantra rises up like some inborn reflex, as primitive and essential as breath.
Every day, countless times. My Boy.
I can't always have him though, and sometimes even when I do the yearning goes on.
For me, this is what autism means right now.

Making a Wave When We Can

2010-05-10T20:00:00.000-07:00

I have a Master's Degree, four teaching certifications, and a list of professional development courses and workshops that goes on for pages and pages. A voracious reader, I consider myself a lifelong learner.

Nothing has taught me more in my 38 years than the boy about to turn six and the girl who just celebrated her fourth birthday at Disney Land. Everything else I ever learned fit inside a water bottle. My children teach me as much as the Pacific Ocean they love so much. It is tumultuous learning, fraught with frustration, and I fail all the time.

But I am a teacher, and I preach the value of failure, the merit of "discovery learning." I yammer on to anyone who will listen that lessons that stick present challenges, that nothing valuable comes easy.

So I'm trying to learn in concert from my kids and myself. I'm trying to value process. I'm trying to keep growing, and to keep going.

My brain cells don't multiply like they used; these synapses slow down sometimes. I miss the plasticity of my college mind. But much more rides on my knowledge acquisition these days. I am no longer learning for the sake of my future, but for theirs.

And so I keep plugging away, doing my homework, listening, learning. Trying to keep my head above water.

Random Thoughts

2010-05-09T18:06:00.000-07:00

It used to be that Father's Day depressed me -- when I was a kid.
Now Mother's Day makes me melancholy.

Tomorrow is IEP day. Thus I spent a fortune at Target and have many new accordion files and organizers in my possession.

My son asked me to read him an abc book about heroes today. R was for Rain Man. After I finished I said I liked Upside Down Man the most because he was funny. He said, "I want to be Rain Man!" He said it about 10 times and I finally distracted him with another book.

Does anyone else describe their weekends as survival? My mom asked me what we did today. "Just tried to keep our heads down," is how I put it. It wasn't a bad day, not by our standards. We spent it trying to minimize meltdowns and make time pass.

I really want to be a better adjusted, more content person. If you have a reading list that might help, I'm ready for some homework.

The keyboard on our new netbook sucks. Or my hands are just huge.

That's all.

Laying Down the Law

2010-05-06T18:20:00.001-07:00

Sometimes I get fired up and a dash off upset letters to the president. Usually it's about education. Oddly, I have never written to him about autism. I thought about that today, and it turned into me dashing off this post. (I wish I had the time to research a more in-depth, journalistic piece. My To Do List cracks up at that mere thought.) Maybe you will consider writing a similar post, and link to it in the comments:

If I could talk to President Obama, Congress, or other influential leaders, what would I tell them about autism?

- Autism is not just one thing. It's not easy to define. To know one child with autism is to know one child with autism. You could have 20 autistic people in a room and they could have very little in common. Some would look you in the eye, some would carry on a conversation with you, some would hug you, some would have special talents, some would have very high IQs, some would spin or flap, some would have more than one diagnosis, and some would not -- but every single person in the room would have value, importance, significance and worth.
- Even the undisputed stats tell us autism in an increasing concern. It is time to make this a priority of our surgeon general and our Secretary of Health and Human Services. I see the military getting behind the cause of fighting obesity because they see the national importance. Well, obesity is a real concern. But it has taken us far too long to realize how important. Let's not be so slow to help families who deal with autism - who deal with inadequate resources, discrimination, health challenges, and economic struggles.
- Like obesity, autism becomes more expensive when ignored. It is not just right and ethical to provide support to children with autism, early intervention is actually quite cost effective. We need to act to ensure equal access to early intervention regardless of geography, ethnicity, class, or anything else.
- The education system, in vast need of reform, must differentiate for the diverse needs of all learners, but particularly kids on the autism spectrum. This requires differentiated instruction, adequate resources, and better trained educators. Public officials need to think about how we can make this happen, and how they can influence teacher preparation institutions to take on these challenges as well.
- Parents with kids on the spectrum face struggles financially and in maintaining their careers. Their circumstances vary as widely as the kinds of autism that exist. Some parents of kids with autism are blue collar and some are white collar, some are famous and some are very private, some are married while others are divorced, some are CEOs, some are teachers... Tax breaks could benefit many, and job flexibility could benefit many, but the important thing for our leadership to grasp is that by helping families cope with challenges brought by autism, those families have more to offer the country as well. Everyone benefits.
- Families with autism are vulnerable. Because autism has so many unknowns, there are those who would exploit parents to make a quick buck. How can Congress encourage innovation and supports for families but also act swiftly to put a stop to those whose snake oil would do financial or physical harm?o
- INCLUSION, INCLUSION, INCLUSION. There is no where, no reason, and no benefit in hiding away the ever growing population of children and adults with autism. Segregation benefits no one, and inclusion benefits everyone. We need to support the inclusion of kids on the spectrum in schools, clubs, teams, and we need to extend support beyond school age years. The children diagnosed every 20 minutes today are the adults, the VOTERS, of tomorrow. Some might still need supports into adulthood, but the more we help early, the better off they will be.
- Promote volunteerism. People who spend time helping those who have autism will learn, dispel myths and ignorance, build community, make a difference, and reap their own rewards. People with autism have a lot to give, too.

Grab Bag

2010-05-04T17:50:00.000-07:00

People with inquiring minds have been asking: So what happened next at school? What about the bullying and teasing?

And I want to answer, because I so deeply appreciate the concern. Thank you for thinking of us. Only that part of my brain, that section of my voice, has gone AWOL. I would post about school, but I just can't yet.

Instead I bring you my first ever ADHD-style grab bag of thoughts I've wanted to share.

A little bit of Notable and Quotable

Peaches: Are TOES private parts?
Daddy: No, toes are not private parts.
Peaches: Well, then, WHY do I HAVE to wear closed-toe shoes to school?!!!!

Me: Rooster, did you have a good day?
Roo: YES! Just only one little time out.
Me: Why did you get the time out?
Roo: Because I told the teacher, "You can run, but you CAN'T HIDE!"

Next, an epiphany and a question:
Since my husband's grandmother recently passed away, a few people wanted to make donations to a cause in memory of her. His aunt asked, "What autism charity would be the best choice?" Amazingly, we don't know. We were stunned to realize we know very little about nonprofits that help families with autism. It made us wonder: Is there some amazing charity that helps kids with special needs get services? Preferably one that doesn't care about anything else but helping kids like ours experience things like classes, camps, horseback riding -- whatever makes kids happy while relieving parents a bit. (We would prefer an apolitical charity, as we at Casa del Rooster don't really have the oomph left over at the frazzled ends of days to contemplate any political matters beyond voting in elections.) If you know of an organization like that, let me know. If not, hey, let's start one!

PRODUCT ENDORSEMENT:
Oh, my. Guess what we discovered? I feel like I just clawed my way to the best dress in Filene's (sp?) Basement or something. We found ZPizza. Not impressed yet? Listen to this: ZPizza is in our neighborhood. They sell organic pizza and related good stuff. They sell healthy salads. And. They. Sell. GFCFSF pizza made with daiyana cheese. And it does not cost a whole paycheck. And... are you sitting down? They deliver it. Wait: They are also VERY NICE and extremely considerate. My whole family can eat there happily after catching a movie next door, or call 'em up and tell 'em what to bring us. I'm thinking if we ever adopt a child or a puppy I will name it Z. I'm a little excited. I receive no kickbacks whatsoever, but I am telling you to find a ZPizza and eat there, pronto. See you there.

Who Are They?

2010-05-01T17:51:00.000-07:00

I am conscious of my sensitivity to words. I try to be mindful of it, and to realize that people, including myself, have slips of the tongue, moments of being inarticulate. I try to be less sensitive.

But I feel a little chafed lately by a four letter word.

We see a dentist who performs miracles with my son, because he loves his job, loves kids, and specializes in pediatric dentistry for children who have special needs. When his nurse accidentally gave the Roo a flouride treatment his chart said he should not have, the dentist blanched. Reading a scary look on his face, I asked why that was such a big problem. "Well," he said, "THEY, you know, with metals, THEY..." and he cocked his head toward my child. "We try not to give THEM those treatments because sometimes severly autistic kids..."

For some reason, I reassured him. I think I wanted him to simply stop talking. What was done was done. There was no point to saying my son is not "severly autistic" because I don't even really know what that means, and thanks to Christine I understand how objectionable and ambiguous terms like "high functioning" sound. I could not undo what the nurse had done, and I didn't really even know how a big a deal it was - I'd have to figure that out later - I just wanted the dentist to stop talking because his pronouns made me feel a little novicained and queasy.

I like our dentist, and I like the teachers at my son's school. I know they try hard to help my boy, and they value inclusion of all kinds of kids. But when Roo got hurt at school last week, a teacher called me very worried. "I think his nose is bleeding because he banged it, but since they don't feel pain like other people... I mean, I just don't know how badly he is hurt because I know they can't feel pain, and I just want to be sure he does not have a head injury."

At the phrase "head injury," I flew out of work to go to my boy, no time to explain that my son, and many kids with autism, feel pain, and made sure my boy's nosebleed was just a nosebleed. It was. I found him weeping, because it hurt. I wanted to cry too -- the "theys" were getting to me.

They say April is the cruellest month, and I have to say our April of dentists, dramas, disasters, bullies and booboos lived up to that. On the one hand, I was probably too sensitive amid the chaos. On the other hand, April was autism awareness month, and I'm not sure I was as good of an advocate as I should have been. Next time, I want to do better. Next time, I hope to embrace the teachable moments better, not let the "theys" slide.

Is it me, or sometimes is "they" is a four letter word that hurts?

Autism Mommy Therapist

2010-04-29T19:45:00.000-07:00

There is a newcomer I want to welcome. I know, having received so many kind words of support from so many of you, that this community knows how to make a friendly new voice feel less alone on the journey of raising a child with autism. If you have a minute, won't you say hello?

http://autismmommytherapist.wordpress.com/

Pill Box

2010-04-28T20:27:00.000-07:00

We have put the Rooster on medications before, with great conflict in our hearts. We know the pros and cons, we weighed countless variables, we listened to doctors, we read, we cried, we gave them a try. We thought what we gave him seemed to help him in many positive ways, but as soon as we saw what we thought might be a side effect, we knew we didn't want to push our luck. Right now the Rooster does not take meds, but we have been considering trying again with a different prescription, and we've mentioned this to the school.

Friday our boy went on his first field trip without my husband or me to chaperone. I stared at the clock all day, concerned, waiting for the phone to ring. I took my cell with me to the bathroom. There I found myself preoccupied with wondering about the bathroom situation at the museum he was visiting. I reviewed in my head the other four field trips we went on this year, and how he seemed to do okay. I somehow managed not to chew on my nails.

Finally word came: Good trip! No problems. The teacher wanted to know: He was so good; had we medicated him?!

Ah, well. I try to remember that is good news. What it reminds me, though, is that my husband and I can't attribute every good day on meds to the meds. When we took him off the last prescription, I lived in fear he would regress. Instead, he seemed more present, his conversation more engaged. We really have no way of knowing how to tease apart all the variables to figure out what the meds did or didn't do for him.

I spend a little bit of every day analyzing why the boy did well or poorly at this or that. I analyze his meals, his sleep patterns, his health status, his routines, his sensory diet, and then usually I blame myself for any imperfections in any of the above. That is, when I'm not busy berating myself for what I did or didn't do or eat or take while pregnant, or loathing my own DNA.

Perhaps I have been spending time looking into meds for the wrong one of us.

Remembering GG

2010-04-25T19:55:00.000-07:00

The Rooster clan has heavy hearts tonight. We lost another member of Team Rooster.
After 90 years of a healthy and active life, Rooster's great-grandmother on his father's side passed away.
We are so grateful that in January we were able to attend a wonderful birthday dinner party for her, at a beautiful restaurant at the beach, with all her family gathered around.
After dinner, when we went back home for cake and ice cream, we set a timer on the camera and got great shots with everyone smiling and laughing, everyone's spirits high. I remember how she had spent part of that day reading books to Peaches and Rooster, as she did every time she saw them. Each time she finished a book, Rooster said the same thing: "Another one, please." Sometimes he'd tell her, "Let's get cozy, GG," and they would snuggle up on the sofa under a throw, books piled up on the coffee table. If another grownup tried to listen in on the stories, Rooster sometimes objected saying, "Shhh! We need privacy!" This could go on for an hour or more.
At her 90th, we truly celebrated a long and full life, and we embraced her with love and affection, and that is very fortunate. Just a few weeks ago, she went with her daughter and son-in-law on a getaway trip, where she dined in style, joked around, and went swimming. Her illness happened very suddenly.
She had devoted daughters and sons-in-law, loving and attentive grandchildren, adoring great grandchildren... she had a community of people who mourn her loss, but celebrate her life, and we hold her memory in our hearts.
The Rooster clan will miss her very much.

2010-04-23T21:50:00.000-07:00

We have all judged, we have all assumed. I try not to, but I am human. I try hard to remember this when I feel judged, and when people make assumptions about my family or me. I try to remember we are all more alike than different, we all need the benefit of the doubt.

Still, here is what I want to say to those people who have assumed they know what it is like to raise my children, and who make judgments without compassion:

I don't know what it was like the first time you had a crush, or what it felt like when someone you loved suffered or died. I don't know what it feels like when you wake up in the morning, or how you dream at night. Even though, like you, I have loved, I have lost, I sleep and dream and wake, I can't know your experience. And I don't think you would like it if I assumed that I do know, that I could tell you how to pursue your career with more ambition so you wouldn't have such a lousy job, that I could teach you how to get in shape the right way so your backside wouldn't look like a nursery full of babies' dimples. If I have never walked in your shoes, you might find it callous of me to suggest you don't know the right way to put a spring in your step but that I do. You might think your business plan, your cancer diagnosis, or your dream to run the Boston Marathon are your own business, and you would be entirely right. You might resent it if I suggested you simply chill out, or take a class, or try it my way, as you work through your divorce or your partner's infidelity. I get that. Because I have encountered people like you who think they know what it's like for me to raise my kids, and who believe they have all the answers -- they can't fathom why I don't just get some therapy, a great sitter, some serious antidepressants, a stiff drink, a massage, and a different school for my child and just be done with all the whining already. Some are sure I should be more aggressive while others think I just need some inspired yoga, but the truth is, the one thing I need to be more of is just RESPECTED without judgment. I need that, my kids need that, and even you who stand in judgment need that.

And no, I'm not talking about you. You are the choir, of course. I'd tell the judgers, but you know what they would say... I'm telling you because I bet you know EXACTLY what I mean, and I thought, for a moment, we could stand together and, hypocritical or not, point back at those who choose to point at us.

Walking the Plank

2010-04-19T20:17:00.001-07:00

This morning, when J took our boy onto the school yard for morning lineup, he noticed the other kindergartners pointing. He heard them talking about the Rooster as they entered campus. "He is not normal," they said. J held Roo's hand and approached the group, who continued to point and talk animatedly about our boy. "He is not a normal human being," a little girl said, "he spits." Another boy in the throng didn't like my husband telling the kids to back down, telling them to not say that any more. "He is not normal," the boy said, turning his back on my husband and my Roo.

Around 1:15, J called me. He told me what happened, how my son began his Monday morning after our first decent weekend in months. He told me my son did not even react, he simply held firmly to J's hand. "Why did you wait so long to tell me this?" I shouted, looking at the clock, torn between listening further and racing to call the principal before the school day ended. "That was 5 hours ago!" And then my resilient husband's voice broke.

I'm the kind of girl who compulsively asks people, "Are you okay?" I have asked J about a dozen times a day for a decade. It's a reflex; he gives the same honest answer every time except for today. Today he said, "No."

The teachers tell us this: It does not begin with the children. It comes from the parents. Parents who worry that No Child Left Behind means All Kids Left Behind, and think my son will keep their kids from a good education. Parents who know little or nothing about autism. Parents who think inclusion is like a tax they don't want to pay, a charity they don't wish to bestow. Parents who think "those kids" like mine should be in "other" places.

I have to end this post now even though I have so much more to say. I have 20 pirate birthday party invitations to fill out, address, and stuff with treasure maps to our house. I have 20 children to kill with kindness. I have almost 40 parents to think about, long and hard, so I can remember my empathy, my compassion. I have toy eye patches and other booty to buy for a six-year-old Matey who is very much a normal human being, a normal human being who has what is becoming an all too normal challenge: intolerance and discrimination because of his autism.

This Child

2010-04-17T18:06:00.000-07:00

"I no longer wish to parent this child."
Have you heard the news?
Well, if you have been to this blog before, you know sometimes I get inarticulate when I get upset, so I've been thinking more than usual about what I want to say here. I apologize if I'm nonetheless incoherent and rambling, but I know I have to get this off my chest.

What does it mean to be a parent? To be a family? To make a commitment?

When I was 10 or 11, my dad took off, and I never saw him again. Don't be sorry -- I consider his absence a stroke of luck, because my father was a criminal, an addict, and a compulsive liar, and I ended up with my mom and the two best grandparents any child could ever have. But I spent a lot of time in my childhood thinking about what it meant to have had my father leave. At times I wondered if it marked me somehow. Was I unlovable? Was I a loser? Was I only half as loved as my friends? And I wondered how I might pay the price; after all, I knew at least one friend whose parents didn't feel comfortable having her play at my house because of our "situation." I knew it was not my fault that my parents divorced or that my father defrauded people or that he left. I knew, too, though, that I carried his genes, and I wondered if that did make me tainted, if I would grow up and steal or drink or have addictions. I wondered if I would leave my children someday. I simultaneously vowed to be nothing like him and to worry that I might not have a choice given my DNA. And while I was not ashamed that my father had walked out on us, I sometimes felt embarrassed that I had no one to take me to the Father-Daughter picnic kind of thing.

Along the way, surrogates come into all our lives -- people you adopt or who adopt you as the next-best-thing-to-kin. We have soul sisters, father figures, borrowed Grannies and all the rest. We build a community based on love connections rather than blood ties. But sometimes when conflicts arise in those connections, and sometimes when endings happen, people end up saying, "Well, blood is thicker than water." Sometimes people feel that if you aren't related to them, it's easier to walk away away from you. And then the sting returns... and then if you lose that person, you feel acutely reminded that you don't have those blood ties.

I don't say goodbyes as easily as some. I believe in commitment. I believe in wedding vows and til death do us part, I believe that when you adopt a child you are their family the same as any other family.

Oh, sure, I might fantasize about running away from home as much or more than the next girl, but the truth is, I believe strongly in responsibility to home and family, in putting the good of the tribe ahead of the good for myself.

If I make a promise, I mean it. If I make a bargain, I keep up my end of the deal. Sometimes I still wonder what part of my father I carry inside me, but I'm nearly as old now as he was when he fled, and so far the only family resemblance I'm aware of comes in my ruddy cheeks and blue eyes.

I do not know the woman from Florida in the news for sending her adopted child back to Russia with a note saying she longer wished to parent her child. In fact, I know very little about her, because I can't bring myself to follow the news coverage. I heard the basics on the radio while I was driving, and before the 30 second piece ended, I had tears in my eyes and turned the station. I guess I have always reacted strongly to stories of child abandonment, I guess I always will. But I wasn't thinking of my father when I heard that story. I was thinking, as I always am I guess, of my children.

What if my Rooster was orphaned, had no family to raise him? Would he be unadoptable? Would he suffer a similar fate to the boy from Russia who was turned away for having too many issues?

Children are beautiful little beings we fantasize about when we want to start families. Then the come home, still beautiful and small, but much harder than we imagined. They come with dramas and they take enormous effort and they can pummel you sometimes with their force, flatten you with their needs. But parents who choose to have them (biologically or legally) make a promise, a commitment, a sacred pact. To me parenthood goes something like this:

I will love you, my child, no matter how hard it gets. I might not like everything about you, but I will do my best to raise you to be a person you will love, who will have things to offer the world, who will love your life. I will shelter you, I will protect you, and I will teach you. Wherever I have a home, you have one as well. Your childhood will not last forever, and so I will treat it as a sacred space in time, and I will use it to help you begin the best future you can have. I will be your parent, you will be my child, and nothing can come between that.

As someone who admittedly kvetches ad naseum how hard I find it to parent, and how difficult it seems my children can be, I really cannot imagine doing anything else. I cannot imagine ever walking away. I cannot fathom writing down the words, "I no longer wish to parent this child."

Snnapppp!

2010-04-13T20:45:00.000-07:00

How ironic that after my last post, called Snap, I snapped.
Snapped.
Cukoo!
Craaazzzzy.
Lost it.
"Dropped my basket."
Flipped my lid.

Both my kids have been tougher than usual, circumstances have been tougher than usual, and J was not at home for the day when Rooster was particularly "off" this weekend. I still had not recovered from Spring Break and family birthdays and Disney Land and epic meltdowns, and suddenly the Rooster hung on the curtains and broke the rod. When I spoke sharply, he mocked me. My head spun around backward a few hundred times as I spiralled out into lalaland and without all of you here to stop me, I snapped.

(***Wait, important DISCLAIMER. Don't turn me in to any agencies, or yell at me for stuff I know. Below is bad mama, and I own it, and I apologize. I offer myself up here as a learning experience, and I promise to do better - the best I can - from here on out.)

I grabbed my boy, hauled him off to his room, got on my knees, stared eyeball to eyeball with him, and started yelling. Crying, frothing at the mouth a bit too I imagine... I think I had three heads, and I think we were both shaking.

My incoherent meltdown went something like this, and I hope you believe me when I tell you I'm not usually insane this way:

"Rooster! ROOO! Rooo! LOOK AT ME! LOOK AT MY EYES. Where ARE YOU? Where is MY BOY??! Rooster, MOMMY is so UPSET because I NEED YOU, and sometimes you are here, and sometimes YOU ARE GONE!!! WHAT? HAPPENS? TO? YOU? You CANNOT just leave me sometimes, Rooster! I am trying so hard! I am doing everything I can think of to help you behave. And what are you doing? Fighting! Screaming! Not listening! Saying mean words! Hitting your sister. Pulling on the curtains over and over and over and over no matter how many times I tell you to stop and then you BREAK the curtains, Rooster! Look at me! We have talked about this! Rooster, we are not going to let autism hide my good boy! I NEED my good boy! I need him! Do you HEAR ME? Do you know how much I NEED MY ROOSTER?! Do you? Do you? HOW MUCH DOES MOMMY LOVE YOU, ROO? YOU MUST STAY HERE WITH ME! You must do three things. You MUST love, try to learn, and try to be happy! THAT IS IT, thatisyourjob! Do those things! Say them! LOVE, LEARN, BE HAPPY. Again. LOVE, LEARN, BE HAPPY. Does this look like loving, learning and being happy? NO! It does NOT! This day looks like fighting and being grumpy and sad and it's TOO MUCH. IT HAS TO STOP! RIGHT NOW! RIGHT NOW! RIGHT THIS MINUTE! RIGHT THIS VERY MINUTE RIGHT NOW!"

I'm embarrassed to write it, horrified to have freaked like that. But? Hey, I think it did reach him. He cried. I cried. We both felt scared. But he hasn't touched the curtains since. That doesn't mean I'm defending myself, it's just a side note. And I'm seriously considering fitting in another therapist in our crazy schedule -- this one, for me. Anyone know one that makes house calls? Maybe Skypes?!

Snap

2010-04-11T09:31:00.000-07:00

My husband gave me a metaphor the other day that has me thinking.

See, I have a weird jaw problem, a kind of TMJ that has bothered me since childhood. When my jaw is "out," which is about half the time, it ranges from mildy irritating to intensely painful, and the longer it stays "out," the more the discomfort spreads to my shoulder, my head, my neck, my back. Then, my jaw pops; the ball and joint essentially line up properly again, my jaw goes back "in," and I feel immense relief, until the next time.

The other night after J tucked in the Rooster, I asked, "Does he still feel off to you? Still feel far away?" He said, "Yeah. It's like your jaw. Things haven't felt right for a few weeks. I keep waiting for him to suddenly snap back like he does, to look me in the eye and say, 'Daddy, Daddy, listen...' and have a real conversation with me again."

You know what a sucker I am for just about any cheap metaphor, and this one really made sense to me. I've been thinking about it ever since.

Yes, it does feel like our Rooster has two essential states -- one where he feels present and accesible, and one where we talk about him as being "off," meaning varying degress of unreachable. Sometimes I get angry or frustrated or depressed about the Rooster being off, and sometimes it feels like he'll never come back again. Having the jaw metaphor helps. First, the metaphor reminds me that the Rooster likely feels at least as much discomfort when he's off as we do, and so I need to be more understanding. Whatever causes him to veer off (illness? food? chemistry? fatigue? emotions? AUTISM?!) is something beyond his control, something happening to his body, not a choice he makes. The longer he suffers, the more likely the affect is to spread --- we see his language weaken, his very limited impulse control vanish entirely. It also helps me realize that neither state is likely to be permanent. My jaw has always popped eventually.

And you know what helps my jaw? Rest. Relaxing. Massage. Reduced stress. TLC.

We've had some bad weeks here. The Rooster has been off, my jaw has ached, we've all been gritting our teeth and butting heads.

We all need a little relief.

Parenthood

2010-04-07T18:43:00.000-07:00

I am watching Parenthood on Hulu on J's Mac mini in our bedroom to escape for a little while because he was afraid my other escape from parenthood might be more drastic and involve a padded room, and that sounded expensive and messy. I'll come back to that later. More important to me in this moment, though, as a former arts and entertainment writer, I sit here watching something actually geared for my own demographic for one of the rare times in the last half a decade, and I find myself strangely compelled to do a little of my old schtick.

Maybe I felt a little time warp seeing Lauren Gilmore -- I mean, Lauren Graham -- with the same hair she had before I had children when we'd meet up on Tuesday nights on the WB to compare dysfunctional families. This time, her dysfunctional family has both more and less in common with my own family, but just like with Gilmore Girls, I can't stop drawing comparisons while I watch the show.

In the Gilmore Girls, I was Rory, the studious offspring of the antiauthoritarian mother Graham played -- I was the girl who deeply loved her grandparents, worked on the school newspaper, wanted to tackle the world. In Parenthood, I am Kristina Braverman, mother of two, increasingly overwhelmed by worrying about my son's special needs. I'm seeing lots of reactions to Parenthood within the online autism community, and while the reactions to the Asperger's storyline are mixed, the likeability of the overall show seems a common thread. I suspect it's because, like me, many people see themselves in one or more of the characters, who all seem familiar in an overly stylized kind of way.

Yes, TV shows oversimplify, follow a predictable arc, wrap everything up neatly in well under an hour once you take out the ads. Yes, they stereotype, and sure, everyone is kind of hot. Parenthood is one of a good many shows where you can't help get distracted thinking about the implausible math when you try to reconcile the ages of the characters and the casting. Those things are necessary ingredients in the recipe for Hollywood offerings. But here is my more nitty gritty comparison between The Braverman Clan and the Rooster Household.

- So, as I write this, Max's new behaviorist is offering him a chance to earn a lizard if he will play four square with a girl at the park. Now, the Rooster would take a lizard any day over whatever is the hottest game rocking the elementary world. But his response would to the quid pro quo would go something more like this: NO! NOW GIVE ME A LIZARD NOWWWWWWWWW. I'M NOT PLAYING WITH HER, BUT I WANT THE LIZARD. RIGHT NOW.
And let's say he did agree to the cupcake behaviorist's deal. They're going to need a few seasons and a few more specialists to help him figure out the coordination and focus to play the game.
- Now I'm watching a scene between Max's parents as they talk about their sex life. Okay, well, I think it's great they have time to talk about it, greater still time to do it. But the part that I can't relate to AT ALL? That Max's mom is going to tell the young, adorable, ABA chick who clearly has no stretch marks that Max's dad, and I quote, "has a good one." Or did I mishear that line? Please tell me I did. Because I'd be more likely to tell the new pretty young thing working long hours at my house that my husband has the smelliest socks in history and terrible morning breath. He doesn't, but I wouldn't mind her thinking so. Let her keep her eye on the little boy, not the big one!
- So now the episode is wrapping up, and everybody is playing nicely, adults and kids alike. The wayward teen has ulterior motives, but at least she's doing extra credit work on the literary journal. (I approve, and the title "Spectrum" was a nice touch.) Max wants some bugs, so he seems ready to do more social skills work at the park, no big deal. The single guy springs his biracial son onhis parents for the first time and they smile and break out the family bicycle so he can sail off down the road to new family cheers. The Type-A attorney accepts that another mama she loathes from the playgroup put the moves on her stay-at-home husband and even offers to put their daughters into a pottery class together. It's not that I mind the happily ever after, I even like living vicariously through it. But in the final scene, Max's mother remarks that she finally feels relaxed after two months.
Two MONTHS?
TWO MONTHS?
Wow, the Bravermans went from diagnosis to relaxed thanks to ABA in less time that the Rooster clan managed to make it through the waiting list to sign up for the prerequisite parenting class before we could get into ABA...

I jokingly call us the Rooster clan, but really I envy people with a clan around. I envy the way the Braverman siblings check in on each other, the way the home of the senior Bravermans serves as a hub where everyone connects. Sure, they aren't real, life isn't that simple. But that's why I use it for escapism.

And why, are you wondering, do I need to escape? Well, I promised I'd get back to that. You see, yesterday, I took the kids to Rooster's school for Open House, and with several hundred kids around, my two stood out dramatically as the two worst behaved, to the point that I grounded Peach for the first time while she is a ripe old four years old. J had to drive them both to school today, because I woke up just as furious as I'd gone to bed. Then, today Rooster came home from school with a note that he'd been sent to the principal's office after having four time outs. He spit three times, called somebody a "jack @ss" and finally got the boot when he gave his teacher and aide his middle finger. Everything is being documented since parents started complaining about Rooster about a month ago, we have is IEP early in May, and we're wondering if we should be thinking about yet another school placement before too long. So you could argue that my escapist time would be better spent with something a little less close to home than a show called Parenthood that has an autism story line, but I was actually happier to spend my evening with Max and his peeps than with my own two tonight. And if you think that sounds mean and heartless, I welcome you to come over and demonstrate your best techniques for quality time at Casa del Rooster. If you can find the happy ending over here, you're a Braverman than I.

Ho Ho Ho, Notable and Quotable HUMOR!

2010-04-03T11:25:00.000-07:00

We need a laugh around here.

So I am going to give you one. I want you to humor ME, though, and read the following scene as it transpired, out loud. Trust me, it's almost worthy of a snort, this notable and quotable from my Peach, who has been a rather rotten peach while her grandma visited this week, I have to say. So, we here are grateful for the laugh and are eager to share the mirth with all of you. But get ready to read ALOUD, please. Don't preread it silently, even if you are alone in the room. This one gets its guffaw from the voice.

As a quick side note, I've never once seen my husband obsess on anything outside his passion for filmmaking until he was moved by his deep hurt and frustration in response to a certain schmockity nonsense. My heart aches at his sincere, bewildered, aching discomfort. I figure a certain someone for what she said, but I wish she knew my sweet husband and how she shook him. It is for his sake I've been looking for all the laughs we can get, and so you now need to prepare yourself to read this like a four-year-old and her weary mama:

Peaches: Mama, I see the waiter, and the cleaner upper and the cooker. Is that all? Who else works in this restaurant?

Me: The hostess.

Peaches: Hostess? What is a hostess?

Me: She is the lady who walked us to our seats and gave you your crayons, remember?

Peaches: Hostess? Do they ever call her a ho?

Me: Um, no. No. Would anyone call me Guh? Just Guh, instead of my whole name? That would be silly.

Peaches: But hostess is a long word. What if she is rushing by and they want to talk to her? They could just shout, (SHOUT THIS PART, READER, AS PEACH DID) "HEY! HO! COME OVER HERE, HO!"

The Beginning of the End?

2010-03-31T21:54:00.000-07:00

I can't believe it's taken me more than a week to write about what happened at my son's school.

Well, it was been a doozy of a week. (Peaches turned four, Spring Break began, my mother flew in from the East Coast, I was sick, I took both kids to the dentist for the first time and found Peaches had two cavities, went to Disney Land, had an egg hunt, and some Schmockity ick hit the fan... )

Still, J and I giving a talk to Rooster's kindergarten class about autism felt monumental.

Just as we'd been following the uplifting and captivating story of MOM-NOS meeting with Bud's sweet and supportive class during lunch, we got word that Rooster had made some enemies among the kindergarteners and their parents. A few moms told their children not to play with our boy, and at least one wanted him out of the classroom.

Fortunately, Roo has a good teacher and an amazing inclusion specialist, both of whom are also lawyers. They made it clear that bullying and discrimination would not be tolerated in the classroom. I asked if perhaps I could come lead some parent education, and the kindergarten teacher through her hands up, telling me she considered it somewhat useless to try to reach the parents. "I gave up on teaching the parents," she said. "Every year one or two of them try to separate their child from others based on race or religion, so if they still do that in this day and age and in this city, I'm just going to focus on teaching the children. With the kids I still have hope. But none of this nonsense happens in the classroom. Rooster is a part of things just fine inside the classroom."

So, we have our work cut out for us.

We still plan to reach out to the parents.

But we started with the students.

It was the day before Spring Break - a Friday - first thing in the morning, and we met with an adorable group of five- and six-year-olds.

I want to tell you all about it, want to include the little speech we'd prepared, share with you some of the cute comments... but the truth is, I've started this post six times in as many days. It began with a sentence amazed it had been three days, then almost a week, then a week, then more than a week...

I think that the drama in kindergarten might have been the start of me unravelling once again. The talk went great, but prepping for it and giving it took a lot out of me, and there wasn't exactly enough of me to start with, if you know what I mean. It feels like it was years ago. Everything just keeps piling on and on and on, and I'm feeling defeated. In May Rooster will turn six. My current project is (supposed to be) planning an amazing birthday party to which I can lure his class. This is not very us-like; it feels like a SHOULD but it's not how we roll. And I'm not really ready to roll anyway. I'm more cranky, miserable, ungrateful, exhausted and blech than usual. So this is not much of post. It's more unravelling....