Could it Happen to My Child? Why Neli's story and Zakh's story could be yours, too

If you’re a parent of a child with a disability, you undoubtedly have your ears perked up for news about autistic individuals. And it seems like there’s always another story in the news about an autistic child or young adult being arrested at school or around town.

We’re horrified when we read a story about an eight year old handcuffed and arrested at her school. We rally around families like Zakh Price’s when he’s arrested and charged with assault and dismayed when justice is delayed.

We tweet and do our best to spread the word when a young man with Asperger’s is considered suspicious because he also happens to be black and sitting patiently outside a library waiting for it to open. Finally, a story gets national attention, and yet still he sits in jail. Fortunately, the other young man detailed in the Newsweek story who was tasered and arrested by police while waiting for his brother outside a bar and grill was released. Neli Latson has not been as fortunate, and we parents with children around the same age watch from the wings, concerned because we know all too well how easily it could be our children.

We do the best we can for our kids, we work tirelessly to help our children learn coping skills in order to avoid meltdowns, how to moderate their stims so they don’t attract suspicion, and we work to help the schools they attend understand our children and their triggers. It feels like an unbelievable betrayal when we read that a principal has called the police on an eight year old and even worse when we read that the principal did it “to ‘get their point across to (the girl) and her parents.’” That is a violation of our trust. We send our children to school with the hope, the faith, the belief that the staff and teachers will protect our children and keep them safe.

We have work to do. A lot of it. We must better educate the public to recognize disabilities and differences and to have more compassion (it isn’t just about autism, and if we’re working to change the world, it better be for everyone) for those who are disabled. We have to work with our school systems to make sure that common sense and practical solutions are found so that police aren’t called when a child has a meltdown and strikes out at a teacher or staff member who isn’t handling the situation well. We need to have a zero tolerance policy for school employees who abuse students or intentionally set up a situation so that a child will meltdown. We need, as parents, to be willing to volunteer in our children’s schools, to work to educate the staff. If a school is overburdened with special needs children and doesn’t have the finances for adequate aide staffing, then we need to work with the school to set up a volunteer program (with training) so that individuals interested in helping can.
We need to do better at training first responders. Autism Speaks has an Autism Safety Project to train first responders. Don’t wait for someone else to do it, though. Check with your local first responders and see if they’ve received training. Arrange a tour for your children of the police department, fire station, and work to train your child to know how to respond to questions from first responders. Teach your children how to show a card or an ID bracelet identifying their autism to first responders.

It would be all too easy to sit on the sidelines and blame the parents for the situations their children have found themselves in. In fact, we’re hard-wired to do so, to find a way to blame them so that we can rest comfortably in the notion of “not us.” Well, if you think that, you’re wrong. It could be us. We could do everything right. Our child could do nothing wrong. And it could still happen to us.

After Neli’s story came to my attention, I started to watch my son when we were out at stores; he’s nearly 21, and he’s got a cell phone, so he’ll go to the card aisle or the electronics section without us. He should be able to do that; he’s not going to get lost; he knows where we are in the store, and we can always reach him through his cell phone. I no longer feel comfortable, though, in letting him do this. Why? Not because he can’t navigate this, but because I worry what others will do. My son doesn’t make eye contact much. He wears a ballcap. As he’s walking in a store, if we’re not right by him, his eyes dart rapidly back and forth and he mutters to himself, a nonstop stream of muttering. He looks suspicious. And Neli Latson and Clifford Grevemberg’s stories make it clear that I cannot count on bystander’s common sense and willingness to consider hidden disabilities.

So, while I wait for society to catch up, I keep my son close to my side and I redouble my efforts to help him learn not to dart his eyes back and forth so rapidly, to raise his head, to stop muttering. I work harder with my girls to help them learn control of their emotions so that I can send them to school, confident not so much in the common sense of the school’s employees (and I love their school and the teachers and employees who’ve been nothing but wonderful) as I must learn to be in my daughters’ ability to not lose control.

What else will I do? I’ll ask the first responders in my town how well trained are they to deal with the disabled.  I’ll ask the school resource officer how he’d handle a hypothetical situation involving a special needs student. I’ll ask the principals in my daughter’s schools how they would handle meltdowns. If there aren’t any training programs in place, then I intend to work with the appropriate organizations to make that happen.

It’s time to stand up and to work actively in our own communities. It isn’t enough to read about these stories and tsk-tsk over the tragic stories and then think “not me.”

**I apologize for the awkwardness of the parentheticals.** Ain't changing them, but at least I said sorry. :-)

See this Autism Speaks page for information on how to help your autistic family member interact with first responders.


kathleen said...

Absolutely-if we want to see change, we can not wait around for others to do this. Contacting you local police dept. and offering information-talking to them..it is a wonderful start..Imagine what could happen if every parent of an autistic child did so?

Clay said...

Excellent post. As for AutSpks, at least they were smart enough to partner with Dennis Debbaudt,who really is an expert with this sort of thing. I met him and his family at Autreat 10 years ago. His son would be about 30 now.

Attila The Mom said...

We had a recent incident where Big Kid was alone at his girlfriend's house while she was at work. He had some kind of pimple or abcess inside his ear that burst, and he had a major panic attack. Thought his brains were coming out of his ears.

He called the family doc, and being Sunday, got the message, "if you think this is an emergency, hang up and call 911". So he did.

We were so very fortunate that the 911 operator was trained to recognize that a caller might have a cognitive disability. She asked him if there was someone she could call, and he said, "call my mom".

She called me, and I explained his issues, and said I'd be right down (it's a 45 minute drive). When I got there, there were two officers sitting in the living room with him to make sure he didn't hurt himself.

They were very kind. My son is a very large young man and can be quite intimidating while in the throes of a manic or panic state. If they hadn't had some kind of training, he could have been tased or worse. I shudder to think...

Life as the mother of 4 said...

I am so worried about this. Will is going to be over 6 ft. and 200 hundred pounds when he's an adult. He's already within an inch of his older brother. At some point, policemen are going to see a huge man acting crazy and get scared. (And if they hurt him they will be dealing with an insane mother.) Even when policemen get training (which they have in my town) they still don't understand our children, or even always read their ID braclets.

This freaks me out.

farmwifetwo said...

You should discuss these issues with your local autism society. Here the local one has had many sessions with the police in the closest major city. We had an "up close and personal" discussion with our county police after the school taught our youngest to call 911. He is on their "flagged" list, not just incase he does it again, but also incase he runs away. I will be doing the same again in Sept, as he's going to a school in a different county next year and need to "flag" him there.

Also, it's wonderful how if one person is in the news everyone rallies but I don't see any of these bloggers or organizations caring about those others that aren't flagged. Where's the rallies to get rid of contraints?? Children's Aid's here in Ontario had 20,000 documented restrainings (how many were not documented??) in their children's care homes last year - front pg of the Toront Star last week and picked up NOWHERE afterwards - and wants to get rid of the reporting.... where's the screaming from people... No where... I emailed Community living and my MPP... MPP nothing.. but he's useless on a good day and part of the "in" party. Comm Living said they, like the school's, are NOT allowed to restrain unless it's absolutely necessary... ie. your kid is running out in the middle of the road and is going to get hit by a car... But otherwise... even if they swing at you... you don't restrain, just move away and allow the person space to calm back down. Children's Aid... the one's that can take your kid away for no real reason... can restrain them any time they please... You and I would be thrown in jail if we did it.

I find the "neurodiversity autism community" to be rather self absorbed on these issues. More worried about them being "the sum of their genes", than how they are cared for.... Just remember, here in Ont they've also refused to regulate the PSW's (public support workers) one day you will be old, one day you and your kid will probably be in care... One day these unregulated "professionals" will be in charge of changing your diaper.

Puts an entirely new perspective on things doesn't it.

Catatab_Tabimount said...

I wonder how many people in cop training, also learn about psychological and neurological disorders before they are set for the job. My mom was "loitering" in the airport circle for a few seconds, telling me to go in and pick up a bag, and she'll wait outside for me. Then a security guard told her: "No loitering"

-But my daughter is waiting for me
-How old is she?
-Then she should be able to find you if you circle around
-But she has Aspergers syndrome
-What is that?
-(not having enough time to explain, but quickly says) My daughter expects me to mean what I say.

So he let that go, which was good. I was out a second later. I hope the guy later researched what Aspergers is, which all airport security guards should do. Enough autistics have been harassed in airports because of such ignorance. I bet this is why I never flown until I was 9.

Brandy said...

I agree with you; and I strongly suggest individuals on the spectrum have an explanation of autism memorized and on a card. (I do). Also, I'd like to second local Autism Society of America's will teach police too. (mine does, wonderful group)

I also carry a mini-first aid kit in my bag and understand how to use it, so I can handle mild emergencies on my own. (hence, no need to panic)

On another note, I have a cell phone and several people I can call if I am worried/anxious; that way if one is not able to answer I have another.