Working it Out

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

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

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

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

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

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

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

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

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

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

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

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

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

"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...

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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?

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

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

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...

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?

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?

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

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.