By Jenna Bagnini
What do you do when your child isn’t disabled enough to qualify for services, but isn’t typical either?
My eleven-year-old son can’t brush his own teeth. He chews on the brush and he doesn’t know how to spit, no matter how many times I’ve tried to show him. So at some point I gave up, took the toothbrush from his hand, and started brushing his teeth for him every day. He walks around with his shoes untied all day, not because he can’t tie them, but because it’s hard for him and he doesn’t want to expend the effort. He can’t ride a bike. He refuses to go to the movies, because it’s too loud and the sensory piece is overwhelming. He can’t prepare himself a sandwich. He can swim, but he won’t put his head in the water. Yet this same child doesn’t have an Individual Education Plan (IEP) or even a 504 plan to arrange some special help during the day. Despite his high-functioning autism and ADHD, he’s “not disabled enough” to need services at school.
My son used to have an IEP. He got speech and OT and a social skills group. We moved at the start of this school year, and he was immediately declassified. The new district decided that he no longer needed the assistance. And he is a bright child. He gets good grades. But his behavior is not that of a typical eleven-year-old boy. I believe, even though he is getting some counseling as a building-level service, that his behavior at home is suffering because he is not getting the help he needs at school
Though my son has good grades, if you look in his backpack you will see that it’s a complete disaster. He has an accordion folder for all his subjects, but he just shoves things in and then can’t find them. When I need to send something to school with him to hand to a teacher, I’m pretty sure it isn’t ever going to make its way to the intended destination. And he has a very hard time keeping track of his homework. It’s fortunate for him that he has an incredible memory so he does very well on tests without needing to study for them, because he is constantly forgetting when they are scheduled.
We are restarting the process of evaluating my son and I plan on bringing the paperwork from the neuropsychologist to the school to try again for school-based services. Unfortunately, we are unable to afford private OT, so I am hoping that the school will read over the neuropsych’s report carefully and make a decision that is in the best interest of my child. But I am not entirely optimistic, because he simply doesn’t look “disabled enough” to qualify.
The problem with having a child like mine is that he holds it together so well at school that they don’t see the concerning behaviors (meltdowns, crying fits, refusal to leave the house), and we don’t benefit from any of the interventions that other kids with autism could get. I am constantly hearing that “he is able to access the curriculum.” Yes, he is, but that should not be the end of the story. Grades do not make the whole child. He needs to have social skills and he needs to stop the behaviors, such as picking his nose, that make him distasteful to the other kids. I hear stories from him about being picked on and teased, and I’m afraid it will only get worse as he gets older.
I think it behooves the school to redefine what “able to function in the classroom” means. Are we really doing the best for our children without testing their social skills as well as their ability to regurgitate the facts. If our ultimate goal is to raise productive adults, we have to do better for our fringe kids.
Jenna Bagnini is a divorced mom of three boys (one with special needs), feminist, mental health advocate, yogi, and dancer.