Parenting a child on the autism spectrum can feel isolating at times.
I wish that other people would understand why my son does the things he does, but a lot of the time, I’m trying to figure it out myself. Or I’m trying to help teachers and friends and relatives understand how he’s different, and why.
I wish they’d try to understand instead of just judging on the surface the behaviors they deem not normal.
I saw this over the weekend and it brought tears to my eyes.
I feel pretty weak most of the time.
But I have to be strong for him. I can’t stop trying to make others understand. I assumed that public school teachers and administrators would have a good understanding of the autistic child, but mine is high-functioning enough that, so far, they blow off my concerns.
Even after an unfortunate event related to too much pressure over a reading test (he’s in kindergarten, mind you), I was told that it was a shame that he was already afraid of being challenged.
I wish I was the kind of person who can think of a comeback in a moment, but I usually think of something good to say about three days later. What I wish I would’ve said–and what I will say in our conference–is this: You don’t understand that he challenges HIMSELF far more than you could ever think of doing.
He has been obsessed over this whole AR reading thing. We hear about it constantly at home. He is worried about disappointing everyone at school–his teacher, the librarian, the principal. We reassure him that as long as he tries and does his best, the numerical grade doesn’t matter.
But he’s all about the numbers. He can name his classmates’ AR scores, who has earned which charm for their AR necklaces, what colors the charms are, how many each has. He’s constantly analyzing things. Tonight, The Wizard of Oz was on and after dozens of questions about the storm, and the characters, and what part was a dream and what was real, and how it must be real because he saw the house fall out of the sky, and where were the parents of all those little people…he eventually stopped trying to make it make sense to him.
“I’ve never seen a story like this before!” and he zoomed off on the toy tractor he likes to ride around the house.
But back to the AR reading tests. It’s like in the graphic above, he tells me that loud noises make him forget things. Even with headphones on, he says all the sounds in the room keep him from thinking about what he’s trying to read and answer. He gets so distracted, he can’t remember what he read.
He reads several years ahead of his grade level, and thinks deeply about things. He remembers stuff that no one else recalls. But he can’t pass a kindergarten-level AR test? That tells me more about the environment he’s trying to work in than about how well he comprehends language.
Speaking of his use of language…he gave me this letter tonight:
It says, “Bad idea! The attic door won’t close all the way with the ladder. I’m not kidding! Uh oh! I’m scared. I’m really scared!”
He says “Bad idea” when something worries him. He and his dad went up into the attic yesterday to bring down some bins containing my Thanksgiving dishes and decorations. The attic door didn’t close back tightly. There is maybe a 1/3″ gap at its edge.
I asked him why he felt scared about that, and he said it was because it could fall open in the night and the ladder would break off and it would wake everyone up and make the house fall apart! I reassured him that it was closed well enough, that springs held it shut, and that we’d get dad to check it in the morning.
Before he could go to bed, he had to fold up that letter, put it in an an envelope and leave it for his dad to find when he wakes up tomorrow. Because Dad had to know that there was this danger in the house.
What kid obsesses over an attic door not shutting completely? Or if they’re scared of the crack, you’d expect the reason to be based a bit more in the imagination. At age six, I’d have been scared that spiders, or a mouse, or even a monster might slip out of the opening in the night. But Jonah, he sees the house literally crashing apart because of this unattended detail.
He’s asleep now, so I guess I was able to get his mind calmed for a while. I laid beside him and we prayed, and talked and watched an episode of “Good Eats”. (He is Alton Brown’s biggest fan.)
But my stomach still hurts because his tension becomes my tension, and he’s still so little. I read and study and educate myself as best as I can since his diagnosis, but honestly. Who can really make sense of the paradox of a brilliant, anxious, old mind housed inside a wide-eyed, six year old boy?
I guess for the most part, I don’t expect anyone else to understand what I myself struggle to figure out. But I blogged about it anyway because I feel like offering glimpses inside his mind is one way I can be his brave, be his cheerleader. Because despite the struggles, he truly is one awesome little guy.