Ali Family Autism Truths #21 – The Most Vulnerable

April 21, 2015 – Autism Awareness Month, Autism Truths #21

When I picked up D today from school,, his lead teacher escorted him to my car (usually it’s one of the teaching assistants). She tends to come out to the car line usually only to tell her students’ parents something great that happened that day — or something bad.

Great, not bad, please — I said to myself.

She started with the great – D had a great day today. Did all his work very well, especially his work on the VAAPs (Virginia Alternate Assessment Program). But (oh great — but), he did hit the right side of his head at one point. I thought I saw a mark and asked the nurse to come take a look. She didn’t see anything. He was fine after that, but we wanted to let you know.

Thanks for telling me, I told her. I’ll keep an eye out on it.

One of the most vulnerable and scary things D and I have had to live with is his not being able to tell me what happened to him in his day. Many individuals with autism, whether nonverbal, preverbal, verbal or what-have-you, struggle to tell their loved ones about their day, the good and the bad. Some have worked very hard to find ways to communicate their feelings and what happened to them to their loved ones. For some, it’s all but impossible. It’s that way for D.

Every night before he goes to bed or when he gets out of the shower, I check him all over. Any mark, any bump, any hint of a bruise or bump or a scratch — and my mom radar starts beeping like crazy. I always ask our caregivers and home therapists to do a check themselves when they are leaving and let me know if anything happened. I mean, come on — kids fall and run into things. They do all sorts of things. But I want to know. I need to know. Especially when my son isn’t in a position to tell me anything himself. His teachers are human, and they forget. So, I’ve been known to drop texts to them at 11 p.m. asking very kindly if they can tell me why there’s a mark on D’s back — did he lean up on a chair or fall or something?

The vulnerability of those on the autism spectrum is something that makes many a parent and loved one lose sleep at night. A recent article I read on the lack of accountability and oversight in restraint practices of those with special needs in California schools was enough to rob me of my sleep:

Kindergartner Malik Evans, a nonverbal boy with autism, wouldn’t sit still in his classroom at Mno Grant Elementary School in fall 2012, so his teacher repeatedly wound a rubber strap around his legs, looped it through his chair and tied him to his seat, according to the lawyer who filed a lawsuit against the Antioch Unified School District. Restraining special education students is legal in dire emergencies, but this was abuse, the lawsuit charged. The district settled the case, which included seven other students in Malik’s class, for $8 million; the teacher pleaded guilty to a felony count of child abuse.

Without a report, parents don’t have a data trail to follow. Parents of nonverbal autistic children, in particular, may never know what is happening in the classroom, said Megan Evans, who with her husband Larry was part of the 2013 lawsuit against Antioch Unified on behalf of their son Malik.

Because Malik cried and balked at getting on the bus, Evans called the school almost every day and met with the teacher face-to-face, she said. “They never mentioned restraining,” she said. In January 2013, Megan and Larry Evans had Malik transferred out of Mno Grant Elementary. Two months later, they received a call from an Antioch Police detective who told them that Malik’s special education teacher at Mno Grant, Theresa Allen-Caulboy, was being investigated on criminal charges of child abuse.

Virginia has had it’s own set of problems and lawsuits with restraints and abuse. Article after article discusses case after case. Sometimes a video on a bus catches the abuse, sometimes a child’s distress signals tells the parents that something is very wrong. And how many times are cases dismissed because the one who is vulnerable, the one who is abused cannot speak up for himself? We’ve had our own warning signals with D over the years — nothing major, alhumdullilah, but still enough to put send my suspicions into over drive and probe until I figured out what was going on.

I’m a pushover in many areas of my life, but not when it comes to my kids, and especially not when it comes to D. For the most part, though, we’ve been blessed with teachers, administrators, therapists and caregivers who have been forthright, honest and loving in their care and teaching of D. For that, I am thankful beyond words.

Because there are stories, difficult truths about vulnerability and abuse that are impossible to live with. But we in the autism community live with it. The little D has suffered from others, what we’ve seen in the autism community and the knowledge I’ve armed myself with — just in case — are truths no child, no individual with autism, no parent should have to live with.