August 29, 2012

The Next Phase

Moe started his new school this week. We lost the familiarity of his classroom, his classmates and teachers, but truthfully many of his classmates and teachers have moved on anyway. We gained a 45 minute commute, and hopefully a school that is right for him.

We got off to a bit of a rocky start, in part I think because of an email I sent to his new teachers last week letting them know that Moe has been exhibiting some impulsive and aggressive behaviors. After a horrific Friday during which Moe had a major tantrum at Jelly's school that resulted in a little boy losing several strands of hair, and me bleeding and in tears, I felt I had to tell them so they could be aware.

The upshot is that they want Moe to have 1:1 support in the classroom. And while I wish they had told me this before school started, since it is now much harder to find a good person with availability, I think this will be good for everyone. We will, ideally, find someone from our current ABA team, which will allow some consistency between school and home.

After meeting with the preschool director yesterday, I felt much better. She observed him in the classroom and agreed with the teacher's assessment that he needs 1:1 support, at least for a while. But most important, she seemed to really believe in his abilities. She said "he's ready," for this class, and most importantly, to get started in earnest on an AAC (alternative and augmentative communication) program.

Although Moe has been exposed to several AAC methods, including sign language and picture/icon exchange systems, it has never been in a systematic way. He hasn't much seemed to "get it" and our prior AAC evaluation didn't reveal much. We also knew that the way our programs were set up, we would not be able to provide the consistency that Moe requires to learn, especially an entirely new way of interacting.

But Moe now seems to be a real communicator, is trying to speak, but with only a few sounds in his arsenal, it will be a long time before his ability will match his desire to be understood. He will have an AAC evaluation at his new school. One fantastic thing about this school, as opposed to the public program Moe was in before, is that they have an AAC specialist on staff, who pushes into the classroom twice a week. We will set up some 1:1 sessions as well, and I cannot wait to get started on helping open up the world to Moe and decrease his frustration (and I hope reduce the aggression).

The down side is that Moe has quite a packed schedule, with school in the morning, speech two days a week, OT once a week, and ABA every afternoon, some days until 6:30. With the addition of extra speech with the AAC specialist, I think we will need to make some adjustments. I am a firm believer that downtime is important too.

I am faring quite well in this whole thing. Since Moe's school is only 3 hours, and I didn't want to drive back and forth from home, I joined a really lovely "sports resort" in viewing distance from the school. It is a gym, but also has spa, cafe, wifi, and several lovely pools. It is a great place to unwind, work, exercise and actually shower every day! I have my first personal training session tomorrow. I have never worked with a trainer before and I am not sure what to expect. More on that later, I'm sure.

August 20, 2012

Always Something There to Remind Me

There is a kid at Moe's former school who looks just like Moe. He is maybe a year or two older and has the same curly hair and fair complexion, though I never saw his face. This boy was not in a special education class but I would often see him as school let out for the afternoon. As I waited for Moe, this boy would walk by and for a brief moment I'd think "why is Moe over there by himself?" Sometimes I'd allow the fantasy to go a little bit further, imagining that this was Moe, walking nicely by himself, looking for me. I imagined that the last five years had been a dream, that I would wake up and that this child would be my own, just as beautiful, just as sweet, but just another typical kid in the crowd.


There are a couple of families in the neighborhood with developmentally disabled kids. The girl, who is maybe twelve or thirteen, often has vocal tics or stims, possibly Tourette's. She yelps and shrieks as she walks by (not an unfamiliar sound, though different from Moe's). The boy, who is probably around 18, usually holds a child's toy when he walks. I think it might be a radio. I don't know them, have never exchanged more than a passing nod, as they walk around the neighborhood. They all seem happy enough, or at least content, but I can't help but notice how old the parents look. They look so very tired, like they haven't slept in years. They look like my future. I wonder, when we stroll by, if they look at me and see their past.


Earlier this summer, I was invited to the graduation ceremony for Moe's playgroup. Moe hasn't done much with that group since he was two, though I'm still friends with several of the women. The ceremony was a way to celebrate the kids moving on to kindergarten, graduating from babyhood into their school years. The invitation tore me to shreds. I knew we couldn't go. Moe wouldn't sit still for a ceremony. He wouldn't understand why we were there, wouldn't behave appropriately. And I didn't want to see him there, surrounded by typical kids, the only one not full of words and readiness to take on this new chapter. These children were all babies together; Moe used to be just like them. But didn't he deserve to go? Didn't he make it through five years just like the rest of them? On his own path, different in so many ways, but here nonetheless. Didn't I deserve, maybe more than anybody, to say "I survived. Am surviving?"

We didn't go.


Today is the first day of school in this area. My Facebook feed is full of first day of kindergarten pictures. Friends with kids I've known since they were babies, since Moe was a baby. I didn't expect heartbreak today, didn't prepare for the crushing emotion. Today, I am having a hard time breathing, having trouble finding solace in the small crumbs of progress Moe throws me occasionally. I don't begrudge anyone these pictures. I posted my own "first day" picture as Jelly returned to preschool. And I will take a photo of Moe next week, when he starts his new school. I am hopeful about this year, anxious to get started. But it isn't the same. We are different. He is different. And there is always something there to remind me.

August 14, 2012

An Unnatural Position

Moe has a great laugh. Sometimes I hear this laugh, a sweet giggle that is pure joy, when he's watching TV or we're in the car. Occasionally, during a rare moment when I can get Moe to play, he'll let out a genuine, adorable belly laugh.

But Moe also has another laugh. To the untrained ear, this laugh sounds a lot like the first laugh. But trust me, it is different. This is the manic laugh, the one that escalates, the one that starts and does not stop. This laugh is not in response to a game or a joke, but comes from inside, from a place I do not understand. This laugh is a warning.

It is a warning that Moe is overstimulated. It is a warning that he is not able to control his impulses. It is a warning that he won't be sleeping any time soon, that I need to be on high alert because he is going to grab the dog or pull Jelly's hair. And he better not need a diaper change because it might be nearly impossible to accomplish.

Sometimes Moe wakes up laughing like this, and I know it is going to be a rough day. As parents, we innately want to hear our kids' laughter. In those earliest sleep deprived days, we are propelled forward by our baby's first smile. And just when we wonder how we will make it through another spit-up covered day, we hear our child's first laugh, and are energized once again.

But if ABA has taught me anything, it is that we humans are, as all animals, creatures of behavior and conditioning. And though the power of motherhood is strong, we cannot deny our Pavlovian dispositions. And my life, turned upside down in a myriad of ways, is one in which my son's laughter fills me with dread. I hear Moe laugh and my heart sinks.

It is an unnatural position, an uncomfortable contortion of emotion.

I suppose I am lucky. Moe doesn't have tantrums. He survives trips to Target and is able to eat at a restaurant largely without incident. He rarely cries. If, on a trip to the grocery store, Moe begins to giggle wildly, the stares will largely be of the "aww, isn't he cute" kind, rather than the "I wish she'd control her kid" kind. Not that it matters what anyone else thinks, but I'll take what I can get.

I cannot tell if Moe is happy when he's giggling wildly. I suspect not, that he doesn't enjoy that his mind and body are out of control, or at least I suspect they are. Sometimes he calms down by finding a quiet space, in a closet or reading a book in his room. Though sometimes he seems to try to make the feeling continue, spinning wildly or running back and forth. I imagine it is like a drug, that high feeling, one he wants to continue. And all I can do is try to help him come down gently, and not get hurt in the process.

A mother, trying to stop her son from laughing.

August 9, 2012

Autism Hunger Games

Do you ever feel like you're being tested? Like the universe has entered you into some kind of cosmic Hunger Games that you have no choice but participate in because you lost some crappy genetic lottery?

I imagine some game creators sitting up on high, planning my demise.

"Let's discuss our latest contestant, from the Silicon Valley sector. We've thrown a lot at her. She lost her only sibling to brain cancer, and yet she still managed to get married and have kids. She seemed happy."

"I know, let's make her kid autistic."

"Already did that. What else you got?"

"Okay, well, it's not enough that he doesn't talk. He's also a runner. She'll have to watch him every second he's awake. And speaking of that, he also doesn't sleep. He'll often be manic at three in the morning."

"She's still standing. Okay, let's throw some behaviors in. Now he pulls hair. And bites. Sometimes he'll attack her completely out of nowhere. And sometimes he'll grab the dog. She's already flinching every time the kid moves around the house."

"You'll love this one. I just gave her dog cancer. Skin cancer, you know, so the dog will need to have surgery and have an enormous incision right on her hip - the exact spot the boy likes to grab. This should be fun to watch."

"Nice job."

"Oh! And those stitches, they are prone to popping open on dogs who run and jump. So she'll need to always make sure to keep -- ohmygod I'm laughing so hard I don't think I can even get the words out -- the dog calm. At all times! Who wants to bet on when she starts taking the dog's Prozac?"

Note: This is just a tongue in cheek piece meant to illustrate how chaotic things are right now. It is not meant to offend and I promise I am not going to take the dog's meds. Yet.

August 2, 2012

My Uncle and the Yellow Beetle

After I graduated from business school and moved back to California, I bought my first new car: a 2000 yellow New Beetle. It had a manual transmission, and though I had driven a stick shift for several years, the new car felt different. The clutch was stiffer, and had that German push-down to get into reverse thing. It took me several minutes to get out of the dealer parking lot.

When speaking with my uncle about the new car, he told me "Don't worry. Soon it will feel like an old friend."

It's like this with all big transitions, isn't it? Anxiety builds as changes approach, but soon enough, what is new becomes the status quo.

We are just two and a half weeks away from the start of the new school year. I am nervous about the new school, about how Moe and I will respond to the long drive each morning, about being so far from Jelly's school, about hiring help to care for her. Our days will once again be turned upside down but I know, soon enough, it will all be routine.


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