School Scars
PTSD from Schools and the Autism Label
My son is leaving the public school system in two months, on June 21st. This milestone is making me nostalgic, but not in a good way.
Other parents treasure their memories of their children’s first day of kindergarten, when they file into the school and are greeted by a young smiling teacher. They recall the time that their kids scored the winning goal for the soccer team. Groups of parents cheering and a shiny medal. Woot!
My memories of Ian’s time in public schools come at me at midnight, when I should be sleeping. As I lay awake in bed, I recount all the ways that my son was denied a proper education over the years, all the times that I was discounted, and my own myriad of missteps. I have memories of IEP meetings and administrators, stone faced like Easter Island idols, refusing to give my son help, until I learned the special passwords or hired the right lawyer. I don’t have nostalgia; I have PTSD.
He’ll attend college full time this fall at age 22. At 18, he wasn’t ready socially, medically, and emotionally. Despite an average to superior IQ, he also wasn’t ready academically and required years of tutoring to catch up, because his prior academic preparation can best be described as tragic. Administrators put him in classrooms with low academic expectations, because of his “autism” label. In hindsight, I should have never let that happen.
Ian was first diagnosed with autism when he was nearly five. That’s actually pretty late for a diagnosis. My friends’ kids were diagnosed at two, so the state and the school districts provided them with three years of intensive (40 hours per week) ABA therapy and a full day nursery school. With no label, Ian got one hour of speech therapy and two hours of nursery school. Where would he be now, if I had taken Ian to a private neurologist earlier and not relied on the school district’s evaluation?
I still beat myself up regularly for allowing that delay in diagnosis and the years of missed services. Imagine having 20 years of regrets. I’ve got them. When it comes to your kids, you never forgive yourself.
Once we got the autism diagnosis, things got better and worse.
Ian definitely received more services for his disabilities, once he got the label. He went to a specialized public school program for the next six years, that was just for students with high functioning autism. He was mainstreamed for math and social studies, and got help for reading comprehension and social skills back in his autism room. Later, we moved, and he was placed in other public schools — sometimes in mainstream rooms, other times in “autism rooms.”
Whenever Ian was in special education room aimed at students with autism and similar disabilities, he learned nothing. The expectations for the students in that room was very low. He didn’t have teachers certified in reading or math helping him. They were special education teachers, who weren’t familiar with the latest techniques and had a less rigorous training. Sometimes instruction was provided by an aide, who didn’t have a college degree. Nobody expected anything of those kids, so they got nothing.
One of Ian’s friends was denied access to Physics and advanced math classes, because he was pigeon-holed in the autism room. After high school, he attended a local community college where he caught up. Now, he’s finishing off a math major at New Jersey’s technical college and acing classes like regression analysis.
Not only did those classrooms not provide grade-level classwork, they were worse. They were boring. The students were isolated from information and other human beings. Ian’s knowledge of the world was severely damaged by being left alone doing nothing in the crappiest room in the school building. His education crippled him in so many ways.
While I have prepared him to finish a college degree with IT this fall, Ian still can’t read and write on grade level. Given his IQ, he should be able to do it, but I didn’t hire a tutor in that area until he was 19. I sent him to Kumon in middle school, but couldn’t afford a reading tutor, too. Instead, I held meeting after meeting trying to convince the school district to provide him with a few minutes of additional reading support. It never happened.
Looking back on Ian’s education, I should have never allowed him to be placed in a special education setting. He should have been in a mainstream classroom with an aide to offer support. Until they figure out how to make a good “autism room,” they should all be shutdown.
So, how does this mom move forward? My family will never get those years back. Hating those cold administrators at midnight is pointless; they probably don’t even remember us. Life is too short to be pissed off all the time. So, that’s why I’m building new programs and services to support families like ours.
Most importantly, I’m so proud of my guy. He’s a champ, a fighter. He’s brilliant and kind. He’s our sidekick and best friend.
Ian turns 22 today. When Steve gets back from work, we’re driving to the Apple Store before dinner. When we get there, we’ll announce — “Happy Birthday! Pick out an Apple Watch!” It should be the shock of the century for him.
We’ve said no to his requests for Apple Watch in the past, because we said they were too expensive. They are, but he deserves something great on this birthday. He’s also conditioned to have low expectations for himself. He’s never gotten what other kids get. Ian might not get a drivers license or a girl friend, but my boy is going to get an Apple Watch today.
With happy memories like these, I hope to crowd out the bad ones from the past. I’ll replace my PTSD with new private wins.
LINKS
I wrote about autism for my main newsletter this week.
Pictures from a trip to DIA Beacon and the solar eclipse.
It's so hard, isn't it? We went through nearly the exact same thing. I provide tutoring services for homeschoolers, and in my area there are a lot of neurodivergent kids who are homeschooling. The school districts still don't get it. It helps to talk about it, and hopefully our words will break through eventually.
Happy birthday to Ian! And lots of compassion to you about all those regrets....I know that feeling well, and living with the simultaneous truth that I was doing the best I could and that in hindsight I could have done better had I done things differently isn't always easy.