Saturday I read the story in the Houston Chronicle about thousands of special education students falling through the cracks in Texas. I cried. My blood boiled. I read snippets of the article to John and anger oozed out with each word.
I don’t live in Texas, but the story hit a tender spot.
We’re living this story. We’re fighting this fight.
We have been since the day Jackson transitioned from the state’s early intervention program to the public school system.
Last week Jackson had a terrible week at school.
Daily, I find myself praying on the drive to school and again as I stand and wait for him at the end of the day.
Please Lord, let him walk out without having a meltdown. Please help him have the self control to keep his hands to himself. I pray he didn’t get to rough with the other kids.
I prepare myself for the worst but hope for the best.
Friday his teacher asked me to wait. I knew it wouldn’t be good news.
Jackson had gotten too rough with his classmates. He’d also bitten a little boy.
I have no this aggressive behavior is happening because my son is overwhelmed in a classroom of 15 kids. Back in May we were told there would only be ten. We didn’t have these problems this summer when he was in a smaller classroom setting.
I took Jackson’s hand and we walked to the car. I didn’t yell at my son. I calmly asked about his day, about why he bit his classmate. I asked him if he felt overwhelmed or scared or nervous? But He couldn’t really tell me.
I cried on the way home.
I felt defeated. After a few great weeks of school, I was suddenly dreading the year ahead.
I am not the mama who drives through the drop off line without a worry in the world. I don’t pick him up from school and hurry off to an extracurricular activity. I’m the mama who walks her child to the door, making sure he keeps his hands to himself. I ask a million questions at pickup. I schedule meetings and make phone calls.
My son doesn’t have Autism; though we’ve been told an Autism diagnosis would make getting the services he needs a lot easier.
School officials say it’s a speech delay.
It’s really a neurological speech disorder.
But it goes so much deeper than an inability to talk, and the pieces are finally all starting to fall into place.
When a child can’t talk, when they’re noticeably behind their peers in expressive and receptive language, they find other ways to communicate.
Every behavior is a form of communication.
My son tends to get aggressive.
He grabs, he kicks. Last week he bit.
This doesn’t make my child a monster. My child isn’t a trouble maker or a behavior problem.
My child has special needs.
My son doesn’t have Autism, but he has legitimate disorders. Each one creates a unique set of challenges when he enters the classroom.
The little boy in the news story reminded me so much of Jackson.
He has a condition similar to Autism.
I have no doubt the little boy would have received the services he needed had he had an actual Autism diagnosis.
We wouldn’t have had to fight so hard wither had that been the case for Jackson.
Back in May we found ourselves sitting around a table with Jackson’s IEP team. We were there to make sure he wasn’t shoved into a traditional PreK classroom without any assistance. We knew it would be too much. When Jackson gets overwhelmed, the aggressive behavior begins.
After a lengthy meeting where we voiced our concerns, we were told Jackson would be in an inclusive PreK classroom. The class would include ten students (five on an IEP and five typical), a teacher and two aides. Imagine my surprise when I discovered they were initially going to consider Jackson one of the typical kids (after telling us he would be considered one of the IEP kids).
Their reasoning, he only has a speech IEP.
But what about the meltdowns, the difficulty transitioning, his poor fine motor skills.
Because my son hasn’t had the right diagnosis, his needs have not been taken seriously.
If we weren’t fighting on his behalf, he’d fall through the cracks.
Or be labeled a behavior problem.
We’ve already been told that Jackson will have to fall into another special needs category in order to receive services next year.
A neurological speech disorder isn’t enough.
But it should be.
We’ve known for a while that Jackson’s needs go deeper than Childhood Apraxia of Speech and we’re finally on the right track to getting a proper diagnosis for him.
No, it’s not Autism; but hopefully it will be the answer we need to make school officials see just how challenging the classroom can be.
But just like the little boy in the news story, Jackson shouldn’t have to have another diagnosis to get the help he needs.
No child should.
Childhood Apraxia of Speech and Sensory Processing Disorder should be taken just as seriously as Autism or ADHD.
When will school districts and our society begin to acknowledge the wide variety of disorders that impact children?
When will we stop trying to slap an Autism label on children who don’t have Autism?
When special needs parents speak up.
When we educate others about the disorders that turn our lives upside down.
Life with a child who has special needs is rarely black and white.
Let’s stop pretending it is.