What does the Autistic child want? I wonder if this question is ever asked. Well it’s asked, but what percentage of the time? And, frankly, there are therapists and parents who never ask this question or acknowledge the child they’re working with or raising has opinions all their own.
It’s as if children who have disabilities necessitate therapy 24/7.
Often the child behind the word “Autistic” is forgotten about, and people try to therapy the Autism right out. Thought isn’t given to what the Autistic child might want to do, whereas with a typical child, their concerns, desires, dreams, and preferences are usually contemplated when deciding how that child will spend their time. Not so with the child who has Autism.
An example of this arose as my son’s school year approached. A school therapist was doing a home visit before school began, and she asked, “How has Jeremiah done this summer?” I told her he’d done really well during the last part of the summer, until his sister went back to school (that change threw everything off kilter). She responded, “I’ll be honest, I was worried about how he would do without ESY (Extended School Year – summer school). Although it’s a different schedule, having that time of consistency helps kids.”
The reason Jeremiah didn’t do ESY this past summer was because of that “different schedule” she mentioned, and as for “consistency,” there really was none. In the summer of 2012 we put him in the ESY program for the first time. Some parts of it were good, some parts weren’t.
The Bad: A haphazard, confusing schedule. Although there were many positives about ESY, we found this so negatively impacted Jeremiah and our family that we decided not to do it again. Our school district has an inability to think through the make-up of special needs students, specifically the needs for consistency and routine. I would think if a program were designed to reach children with special needs, they would build it around their inclinations, however our district didn’t.
ESY was only held two mornings a week, whereas during the school year, Jeremiah and his classmates attended school four mornings a week. The kids began their summer like everyone else and then their world was upturned, ESY began. They went for a few weeks then took a break for two weeks and went back for a couple more. Then ESY ended and they waited out the rest of the summer “like every other child.”
But wait, it wasn’t like every other child because everything they’d come to rely upon was flipped on them. Kind of like how some school districts are choosing to add new fall breaks and teacher work days here and there, except as I said, this program was created to meet the needs of children with disABILITIES, not typical children.
It was horrible, we struggled getting him into the new routine in a new place, with new teachers, and new students. Once he settled in, they waylaid Jeremiah and his fellow classmates with a break – a break in the midst of a short summer program. Don’t ask me. Then back to ESY it was, another adjustment, and then off for more summer fun. Not so much. Jeremiah was confused and irritated, it took days to get him to relax into being at home every day, and the times when he had to go back, oh wow. It wasn’t productive and there wasn’t enough positive outcome to consider doing it again.
Plus, what did Jeremiah want to do that summer? I know ESY can be beneficial for kids, I’m aware there are positives, and I don’t think two to three mornings of ESY during the weeks of summer are a bad thing. However, when we consider how Jeremiah felt during all those transitions, I can imagine he was saying he didn’t want to go. Well, more like, “Once you get me into a routine for the summer, keep me there.”
That summer what Jeremiah wanted wasn’t on the forefront of our minds, we were focused on what we were told would be best. But when ESY was over, we agreed he wouldn’t do it again.
There are some positives to ESY.
Different teachers. Only one of his therapists from the school year was in the ESY classroom. Exposure to different teachers is great, but who the child is must be kept in mind. Each year your child will have a different teacher (unless they’re secluded in a special needs classroom) so teachers change, but we don’t need to force it on our children more than necessary. However, if your child can handle it (given a little time and assistance), it will most likely benefit them.
Different students. Your child will always be exposed to new people, so this is an excellent setting where they can be around a more diverse group of kids. (Although, I’m a BIG proponent of inclusion, and in an ESY program you’ll only have children with special needs, no typically functioning children.)
Different school. Your child will be going places, new places, all the time, so this will help with those changes of venue. If your child’s in regular education classrooms, they’ll be switching schools; preschool to primary, primary to middle school, middle school to high school, and they may have a job at some point. In this way an ESY program could be helpful.
The dynamics found in ESY will stretch a child, but we want to make sure we’re thinking about the child. If an Autistic child is absolutely, or even minutely irritated by a summer program, why do it? It’s summer. Does a typical child get to enjoy summer break? Most do, most aren’t forced into a day camp they hate every day of summer.
Neither should an Autistic child be forced into something they hate.
Adversity makes us grow, it makes children grow, and at times it can help the Autistic child, but at what cost? If an Autistic child is truly miserable how beneficial is it going to be? And, if it’s not done right it can harm the Autistic individual.
I was recently asked by a professor at the University of Michigan to submit articles to two anthologies she’s putting together. One focuses on how certain therapies harm Autistic people. This is a real issue. Just because someone tells you to do it, that doesn’t mean it’s right. There are many therapies that are accepted as “normal” for Autistic people, and many have been harmed through its process.
We have to think about the person behind the Autism.
We have to consider what they want. We have to look at their positive qualities, not just the negative ones. There are ways to help the child who has Autism, but it may not be in the way most Autism parents or therapists consider the “best way.”
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You did a great job tackling a subject that I’ve been struggling with recently, and I like the way you detailed the thought processes behind your decisions. Thank you for taking the time to share this.
Thank you very much for your encouraging words! It’s a difficult subject to address amongst the Autism community. Many Autistic adults understand. Thanks again.