The story of Graham’s pink shoes has only been half told.
Before we bought his new shoes he had a pair of white shoes where the velcro stopped sticking for no discernible reason. It would happen any time, any place. The more it happened, the more distracted Graham was by his shoes.
So the pink shoes weren’t just supposed to be his new, beautiful, fancy shoes. They were also supposed to be the end of the shoe drama. No more constant shoe fixing at home. No more notes from his aide at school. It would be the dawn of a bright new happy-shoe era.
“Make it hard tight.”
It took a whole day for Graham to say those four words. They meant that we were not entering a new golden age of footwear.
It was a sign that we have a new problem to tackle.
It started with the wind. As winter came on Graham started to get upset when the wind would blow. We didn’t worry about it too much. Who likes cold wind blowing in their face? He’s a high-strung kid. It’s just one of those things.
But it got worse. He got more upset. And it’s not like we were getting less wind.
We tried to fight back by giving him a mantra. When he’s distracted, he does better, so giving him something to say was helpful. When the wind started to blow and he started to cry, we’d say, “I’m not scared of you, Wind. I am brave.” He’d repeat after us. It didn’t really help but it gave him something to do.
Every day when he gets off the bus, before we even get in the front door he reports to me whether he was scared of the wind at recess.
When it came to the shoes, he requested they be “hard tight.” You’d tighten them as much as you could and it still wasn’t enough for him. When we got him measured for his new shoes we found out the old ones were a size and a half too small and yet he still wasn’t pleased with how tight they were.
The wind, the shoes, the way sometimes he’ll only calm down when he’s sitting on my lap being held tightly… it all meant sensory issues.
Honestly, it’s not the sensory stuff that scares me. A lot of autistic children have sensory issues. I’ve heard a lot of things and read a lot of things and I know I have resources out there.
What bothers me is seeing Graham get upset. Because it’s not just your garden variety upset kid. It’s anxiety. Real, down-to-his-toes, quivering anxiety. It’s turning into obsessiveness.
It’s a hard thing to see in a kid who’s only 3, who should have little more to worry about than sharing toys with his sister.
His age makes it tricky. What on earth do you do with a 3-year-old who has anxiety? An adult can take medication, sit down with a therapist, talk it through, develop coping techniques. But a preschooler?
It’s funny, as Graham’s autistic traits are becoming less and less obvious, other neuroses are popping up. This is the biggest and the hardest and the one that has me the most confounded. The pink shoes that were never tight enough were the final straw. This is something we have to deal with and we need to take steps soon. He needs to be able to go to school without distractions. He needs to be able to play at recess. We need to figure out if this needs to go in his IEP for next year.
I feel like we’ve had more than our fair share of good luck. We got an early diagnosis. We got 25 hours of ABA a week. We got excellent therapists and fantastic Early Intervention workers. We had a successful first IEP meeting. We got an aide for Graham for a few school hours a day. We got a fantastic little school with a wonderful classroom and teachers.
I keep waiting for our luck to end, but apparently it hasn’t yet.
I wasn’t sure what to do, so I called our Developmental Pediatrician. We check in with him twice a year and he’s the one who told us that Graham will probably no longer qualify for his diagnosis in a couple years.
He called us back with basically the best news we could’ve asked for. There’s a study for children with Autism and Anxiety where they’re using techniques they’ve used successfully with Neurotypical kids who have Anxiety. They’re going to get Graham in the study. He’ll get individual therapy.
I thought I was past the point where I’d cry over this stuff, but I did. I was just too happy to hear it. Sometimes I feel guilty that what is so hard for so many families keeps being so easy for us. But I can’t help but feel happy about Graham getting this treatment. And I’m hopeful that the amazing providers we have will soon be available to everyone everywhere.