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...