I thought I did everything right. Not that I’m some perfect parent, but I tried to be the best I could be. I thought I did everything right, but my child still experiences regression.
We had early intervention. We had specialists, therapists, and the like. Our family showed up, took notes, and read everything we could on this mystifying condition known as Autism. I listened to #ActuallyAutistic videos. I read parent blogs. Still, I’m sitting at home dreading my son’s IEP meeting because my child has regressed on his progress.
You can do everything right, but when a neuro-diverse kid encounters a neuro-typical world there is very little you can do sometimes. For us, its school. In the beginning, it was difficult. Still my kiddo made incredible strides. He made friends, he tolerated noisy busy spaces sometimes. Most importantly, my kiddo learned new things.
Now, I have a child who gets anxious at the mere idea of learning. He visibly shakes at the mention of going back to school. In our quest, to find the best classroom for my son, we failed. He is more traumatized now in a self contained classroom designed for social emotional behavior issues than he ever was in general education. We’re still dealing with IEP issues. We’re still dealing with discipline issues. Last spring the new school promised that they would have a better understanding of disability, yet I’m back advocating against suspensions given because my son has meltdowns. Some meltdowns caused because of lack of compliance with the IEP. I’m back to saying repeatedly you can’t punish Autism out of a kid.
This all spills into my home life too. Once my kid liked books and begged for me to read to him, or would spontaneously read in his calm down corner. This isn’t my home anymore. Once my kid ate some meals with the family, and now he seems overly sensitive to any new smells in the kitchen. His diet is even more restrictive, as are his interests.
We can trace the start of this to events that occurred in school. The problem is, I’m at a loss on how to fix it. It feels frustrating to beg for more support when what we get is a hodgepodge of TAs with no one person my son can turn to for help. How do I trust a school that seems to have so little understanding of my son’s issues? How do I get my son back into a building he associates with fear? How do I send my son back into a building I associate with betrayal and mismanagement?
I will be in an IEP meeting on Friday at 11am. Its not the time or day I’d like. It was mandated. This date or much, much later. Not really a choice for a kid who is experiencing mental health issues. I had team members on my side I’d like to take with me, but I can’t, because they couldn’t accommodate timing. This means even the privileged resources I have, I can’t always use. It is a big system, and flexibility is a big issue. Yet flexibility is the thing my family needs the most.
Maybe I’ll get answers. Maybe not. We persist. We move forward from where we are now, hoping we get to a better place. There are no clear choices. Not all disability stories are inspiring. Sometimes we take too many steps backward and not enough forward.