As I’d mentioned the other day, I’m going to share our experiences at school in order to hopefully help someone else out there who may be going through the same thing. But first, some background.
My son was diagnosed with global developmental delays at age three. Cognitive, adaptive, speech, fine motor, gross motor, as well as sensory processing disorder. Quite the difficult time that was, as we’d been expecting just a speech delay. At the time, I’d asked about autism but they said not to think about it. And a year later he was diagnosed on the spectrum, too. He did great in his inclusion preschool program where he received all his services as well, and after a year he moved up to Kindergarten. I didn’t think he was ready, but in NYS if a child is in preschool special education they have to move up when they’re at the right age. And even though he was a boy and born in late October, it was time for K. After a year, his K teachers suggested repeating a year of that, and that’s what we did. And then every year since he’s moved up on time.
He’s done really well, eventually testing out of physical therapy and requiring less speech therapy and occupational therapy. He still struggles a lot, though, and the main thing he struggles with is attention. We saw it on every single report card, heard it at every parent/teacher conference and CSE (committee for special education) meeting (where we set his goals for the next year): if he could just focus, he could do so much better. It was on his evaluations since way back in Kindergarten: his processing speed and perceptual reasoning were very low, “but could be higher if he could pay attention.”
So over the years we’ve tried many interventions to address focus: behavioral, classroom modifications, home modifications, even a couple different ADHD meds (both abysmal failures). Beginning in his third grade, NYS adapted the common core state standards, my nemesis. Not for the same reason as so many other parents, because “what was wrong with the old way” yada yada yada, but because it introduced a gap that was never bridged and a pace that could never be met. He was falling further and further behind and I didn’t know how to help him. Every year when we went in for our CSE meeting, we expected to be told he needed to be held back again, because I *knew* he wasn’t learning.
Finally, at the end of fourth grade, they told us they couldn’t keep his attention for more than 30 seconds and it was time to seek help outside the school district. Up to then, he’d received all his services through the school. They were suggesting counseling, for anxiety or whatever was going on.
We were pretty heartbroken. And then we went to our local autism parenting Facebook group and put it to them: “This is what the school is saying. Have any of you experienced this with your kids?”
Some had, and referred us to an autism counselor who has been wonderful. He met with the teachers, did classroom observation, and came up with some classroom and homework suggestions that might help. He suggested getting rid of homework altogether. The way the autistic brain works, he explained, means homework is a frustrating waste of time. Either they get it, and need no practice, or they don’t get it, and just get upset. So they had no problems with that. We discussed some changes to be made to his sensory diet as well, but as it was the end of the year, we didn’t do too much. I began to look into homeschooling, because at that point, I thought it was going to be our only option.
The next fall, I met with his team immediately after school began. They’d already spoken to the teachers from the year before. His special ed teacher said the no homework thing was “not happening.” He instead assigned easy math sheets, which he hoped would help his self-esteem. (Note: that doesn’t work. The child knows you’re patronizing and it’s beneath him and again, it’s a waste of time). We tried some sensory modifications again.
But it wasn’t too long before the teacher called me (less than a month) to say they were in the same place: my son’s mind was drifting off after only about thirty seconds. No one could reach him. My bright, happy, engaged child was completely withdrawn in school. And on top of that, he’d come home completely burned out and spend the afternoon and evening in his room. Sunday nights he’d melt down, crying and begging not to go to school. Sunday nights after vacation days were even worse. The last one he had, he nearly threw himself down the stairs to get away from us, so he didn’t have to go to bed because going to bed meant going to school the next day. Homeschooling was looking more and more appealing. At the same time, I knew it wasn’t going to be our ideal arrangement.
So back to the counselor we went. He said it sounded a lot like anxiety was making our son shut down, and I made an appointment with our family doctor. She was a social worker before medical school, so she has experience in many areas. When I broached the subject of anxiety meds, she said she really didn’t like to go there first. Her suggestion was something I hadn’t even thought about: “I’d like to see him out of the classroom with a medical excuse. They’ll send you a tutor and he can learn at home.” In her opinion, today’s classrooms are sensory nightmares, with the colored posters and decorations, the noise of the Smartboard, the lack of discipline, etc. Giving him a break to learn at home would be great for his sensory system as well as his anxiety.
It sounded like a great compromise between a traditional classroom and homeschooling where I’d be responsible for the teaching. She said sometimes it is a transition to homeschooling, sometimes it’s temporary, and sometimes it continues for years. She wrote the note, we submitted the application, and waited. And waited. By this time it was November.
In the meantime, we continued to meet with the counselor. During one session, we were chatting about going to the movies, and how our son had discovered watching movies at home with the closed-captioning on helped him pay attention, so we’d recently begun asking for the special glasses when we go to the cinema and they worked great for him. He was better able to follow along with the story instead of just sitting there, eating popcorn. (Don’t get me wrong: his favorite thing about the movies is still getting popcorn). He laughed at jokes and stayed engaged throughout the movie. Before we’d started doing this, it would take him several tries to get through a movie. He’d pay attention for a while, then shut it off and go do something else. Then the next time, he’d make it a little further.
We’d also discovered he was learning about human behavior better, through movies. So of course now we have to be very careful about which ones he sees. Because being autistic and very literal-minded, he sometimes picks up the incorrect messages. Dear God, please let them pull “Uncle Grandpa” off the air. Thank you.
Anyway, this conversation led the counselor to dig out the old test results. And that phrase again jumped out: “His processing speed and perceptual reasoning are low, but could be higher if he could pay attention.” The counselor said he thought that reasoning was wrong. What if those test results were accurate, and that’s the exact reason why our son can’t pay attention?
This has been a game changer (to mix metaphors and use another cliche) in our household, and led us down a path that finally gives us hope. In the next post, I’ll write about our research into processing speed and academics and how it has helped us at home.