Brain Space with #ASD

2014-09-01 16.15.11

Sometimes I feel like Liam takes up at least 90% of my brain function. The rest is reserved for the rudimentary necessities of life — the lizard brain, as it were — and just enough to get by at work (forget creative endeavors lately… that’s a hoot). I worry about him ceaselessly, and it doesn’t help that mainstream media has a way of playing to those fears with their portrayal of high functioning autistic kids. Even though the last week has been a triumph, it’s also been at the long tail of a rather frenzied few years. And really, there isn’t much of an end in sight.

Having a normative child after an atypical child makes his struggles even more stark in contrast. Unlike his sister, Liam’s never quite grasped the concept of an indoor voice. Or please and thank you. Or the need to throw trash away in the garbage after you’ve eaten something. Or transitions. Or internal monologues staying internal. These are things his toddler sister does without a second thought, almost always cheerfully and happily, trusting her parents to love her and protect her and support her.

Not so with the boy. We’ve always struggled with opposition (while there’s no official co-diagnosis of ODD, it’s at about a 10% rate among Aperger kids). His favorite word is still “NO”–or as his director said this week, “it’s his default.” And I’d go so far to say that sometimes it feels like Asperger’s (with him anyway) is a long-term terrible twos. Oh, he’s brilliant and capable in a thousand other ways. But it’s amazing how those little details, like following directions when asked and respecting other’s opinions, can make life at home incredibly difficult. One thing — for instance not having a cherry on his drink last night — can turn into 30 minutes of struggling to get him to come back to the table while the onlookers stare. (As an aside, I remember reading on a blog once that a woman printed out little cards to hand to people in public who stared saying: “Sorry for the interruption. My son has Asperger’s. To learn more about it visit:”)

For the first five years of his life, Michael and I were just that — Michael and Natania, rarely mommy and daddy. And almost never “daddy”. He still struggles to give us our rank names, and doesn’t understand that experience and education give some people expertise — and in the case of parenting — a responsibility to assert their authority. To Liam, he’s just as equipped to write a novel as I am. Or play the guitar. The work involved between thought and completion just doesn’t occur to him.

And the noise. The noise, noise, noise. It’s probably been made worse by the fact that I’ve had a sinus cold for the last three weeks, but no matter how many times we tell him to speak softly, he is just incapable of remembering that when you’re inside, in public, or when people ask, you shouldn’t shout. It makes weekends and family time surprisingly stressful when you’re constantly being shouted at and brought into a conversation you never asked to be part of. “Look at this thing in Minecraft!” It looks just like the other things, but to him, it might as well be the greatest achievement of a lifetime… at least for the next two minutes.

His first week of school wasn’t perfect, but it’s given me a sense of hope amidst all of this as I mentioned in the last post. Talking with the director and hearing from his teachers, they are well aware of his overwhelming fears, anxiety, and oppositional behavior. But they also see the bright, exuberant, hilarious kid that’s underneath — and he’s not alone in this.

I know we’re not home free. One of the hardest things for me to bear is knowing the length of this journey — a diagnosis feels like release at first, but then you realize it’s a statement of fact. It doesn’t get cured. It doesn’t get easier. Parts of it get easier, sure, but then other parts get more difficult. It’s an act of extreme flexibility around an astonishingly inflexible child.

Every week will be different, and every day, too. Because Liam is as varied as the phases of the moon. But with the right staff, the right approach, and the right insight, I’m certain that we’re doing what’s best for him. We’re doing all that we can. Loving, supporting, educating — even if they’re not things he values right now, directly. It eases my fears a bit.

We hope you can share Liam’s story and his GoFundMe page to help us get to our goal. We’ve made great progress, but we’re still a long way from the end — and our goal here still doesn’t cover other expenses like after school care.

Thanks for listening and being a part of his, and our, lives. That the vast majority of our donors have been friends and, in many cases, virtual friends, is beyond astonishing. Thank you friends. Thank you all so much.