Today, my five year old son, Buddy, came up to me and spontaneously said “Happy Mother’s Day!” This is the first time he has ever wished me a happy anything and it was definitely better than the gifts…even the Russell Strover’s chocolate!
Buddy has come so far since we got him into a new therapy program and out of the public schools. He’s started engaging in imaginary play such as having his Yo Gabba Gabba dolls interact with each other. He’s playing with others more appropriately, he’s more social, and he’s no longer anxious like he was when he was going to public school. He is really blossoming, and I wish every family affected by a family member with autism was able to access the services we are.
Unfortunately, they aren’t. Even with private insurance, his treatment is very expensive. I also had to rearrange my career to be able to stay home with my children during the day so I could homeschool Buddy because school was so toxic for him. One of the reasons I was drawn to Clinton as a presidential candidate is because she is the only one that has a platform for helping families of children with autism. I’ve also written about how one of her plans, trained early intervention, is vital.
Today I’m going to write about why all families with a child with autism need to be able to access quality services. To start, in my area, I am not alone in pulling my son out of school because the environment was so toxic. Most families with a child with autism are forced to do this. But then there are those who wish they could, but can’t.
I’ve written a lot about Buddy and mine’s struggles with the school. The short story is that, though he has a documented disability and though he was in a blended special education Pre-K class, everything he did that was a symptom of autism was coached in terms of him being defiant. I want to emphasize Buddy was not a behavior problem. He didn’t hit, kick or bite other students. What he did was lay on the floor while transitioning between activities. Like a lot of children with autism, Buddy has a hard time with transitions. Also, like many children with autism, he is delayed on toilet training. Since starting his new school, they have identified that this is tied to his problem with transitions. He has a hard time stopping what he is doing to transition to the bathroom. His old school said he was defiant and started putting him in time out for using his diaper, something that every book on potty training and autism says makes the problem worse. They were shaming him. They also shamed him for putting his clothes on backwards. In my view, how Buddy wears his clothes is not a big deal. He’s learning to be more independent and I want to encourage it. And it’s a recipe for a meltdown if I try to correct him. For the school, it was Buddy being defiant.
I want to make it clear, that with no input from me whatsoever, in the two months since Buddy stopped going to public school, he has figured out how to dress himself correctly with no help from me. It wasa phase. He’s five, he’s learning. And building his confidence was more important to me than making sure he had it 100% correct. How unyielding the school was for a special ed pre-k class was mind blowing and disheartening.
Further, labeling Buddy as “defiant” does not address the reason behind his behavior. The reason he lays on the floor and has difficultly potty training is because he has difficulty with transitions. His new school is starting to put in programs to help him handle transitions better and we are starting to see potty training success. At his old school, he was being punished for having a difficult time adjusting to this world because he has autism. He was being punished for being who he was, a small child with a disability having a hard time figuring out this world. Punishment was not going to help him!
It was going to discourage him. Like I already mentioned, he was developing anxiety about going to school. Further, by labeling him as “defiant” in PRE-K, that teacher branded my son with a scarlet letter that would follow him through his school career. This was fast tracking him on the school to prison pipeline.
Unfortunately, I have worked with parents not as fortunate as me who have to keep their children with autism in schools that are failing them. They are not able to afford the $1000/week for an intensive high quality therapy program. While Buddy is thriving, their children fall through the cracks and remain on that school to prison pipeline.
This is why all insurance programs need to cover comprehensive autism services.
Factors that contributed to my son and other children being poorly treated in the public schools include low teacher to student ratio. Buddy’s class included over twenty students, one teacher and two TAs. A child with autism needs constant engagement though. In his therapy program, there is a 1:1 student teacher ratio
. Other problems was his teacher or his specialists such as his speech therapist not being adequately trained in autism and what is normal for a child with autism. Finally, schools want all kids to fit a certain mold and learn a certain way. They don’t tolerate children who are different well.
Buddy is doing much better because he is surrounded by specialists who understand autism. His team of therapists and I believe that he is on the path to making enough progress to one day go to college and be a contributing member of society when he becomes an adult. Every child with autism should have this chance, not just the one whose parents can afford the financial hit. And further, if you think paying for all this when a child is young is just too much, well, keeping someone in prison is a lot more expensive then educating them and giving them early intervention services.