Thursday, September 29, 2011

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 (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.

Saturday, September 24, 2011

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.

Thursday, September 15, 2011

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, September 12, 2011

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.

Wednesday, September 7, 2011

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.

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:

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.

Tuesday, September 6, 2011

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.