I will never say, think, let anyone believe, that my child, any child, is broken. His brain chemistry is complicated, yes. Broken, heck no.
Does he misbehave? All the time. Lose control of his feelings? Daily. Well, hourly to be more precise. I’m the first one to realize this.
That being said, there are some serious system failures surrounding this experience, surrounding my son.
His entire life he has been jotted down on waitlists and official documents as something to help- in the future. From the time we were referred to have him tested to the time that he was actually diagnosed with Autism was two years. Two. Years. Do you understand how vital early intervention is for children? Now, do you understand the reluctance of insurance companies to cover that intervention without an actual diagnosis? It’s sickening the “waiting game” that we are made to endure. System failure.
When I was seeking out a psychiatrist to locally test my son for Autism, I found a little clinic that was somewhat new in the area. We came to meet her and things seemed alright at first. Then, she started talking. She told me that F will never make it in a typical school setting. We went over medical history for our family. I mentioned that I suffered Hyperemesis Gravidarum while pregnant with F. Her exact words in reply were, “sometimes complications like that are the bodies way of saying that it’s not a viable pregnancy”.
Not a viable pregnancy.
My attempt at helping my son, system failure.
When F started Kindergarten we were terrified of what was before us. You can read bits and pieces of this experience across my blog. It was the most intense form of utter system failure in his life so far. This world was not created for children who struggle. Instead it pushes children behind the moment they turn from authority, widening that academic gap bit by bit.
I read and shared an African proverb recently-
“The child who is not embraced by the village will burn it down to feel its warmth”.
And burn it down, he did. Flames went up on both sides until we withdrew him from the fire entirely.
My child, once again leaving a thick and untouched paper trail behind him, danced in the flames until we brought him back to safety. System. Failure.
Over the last year we have tried a handful of medications to help F with his irritability and impulse control. He’s had fantastic and caring healthcare professionals guiding us through this. Every time we are in the trench of behaviors and need to revise his plan, I look to the professionals to help, and they do. Insurance then forces us through a dance of denials and pre authorizations that delay his care by weeks. When your child is struggling inside his own skin, an hour is too long to wait for help. System failure.
We have had some wonderful experiences mixed in with these terrible ones. F’s special preschool was always fantastic with him. His early intervention team was gentle and kind to us. He’s had teachers who loved him dearly. He’s had wonderful therapists over the years who truly care for him. I try to focus on these people who care about him.
But it’s not enough. These kids need more than adults who wear autism acceptance shirts. Their parents need more than intake packets and behavior checklists. More than fidget toys and noise canceling headphones. Because for every public meltdown that you witness an autistic person experience, there are dozens occurring in their home. It’s not enough to pretend that we accept a neurological difference while at the same time giving three strikes and then excluding them.
Parents need consistent help.
We need faster supports and easier access to them. We need loved ones to understand and follow our ways of helping them and to realize that it looks different than interactions with a neurotypical child.
We need better school authorities. Adults who understand the struggles that our children face and who give more than half an attempt to address them before sending them home.
We need others to realize that no amount of self care will create change, but little bits do help momentarily. Burn out is real. It doesn’t help to be told “you’re so strong” when your strength is fading in and out by the second.
We need a village. One with safety parameters for our kids, loving watchful eyes from adults around us. A village that our children can run through and be themselves in. A village where mom and dad have room to breathe, places to rest, and shoulders to lean on.
Because every child with autism grows to be an adult with autism. When you sit back and let a child light that village on fire, it spreads. It spreads rapidly. You don’t list that fire on a spreadsheet to assist months down the road.
You pick up the hose and help.