autism

Autism Shines and Autism Wanders.

When we created the facebook page “Autism Shines” the goal was to counteract the information in the press about people with autism being dangerous. This was in the wake of the Sandy Hook shootings, as autism was being repeatedly blamed for the horrors of what happened that cold December day.  We wanted to show the world that they need not fear our autistic children, parents and friends.

Today, the admins at Autism Shines along with hundreds of bloggers and journalists are working to counteract the message we’ve been seeing replayed over and over again in the media following the disappearances and subsequent drownings of children with autism:  This is the parents fault.  The parents of autistic children should have known better. How could they have lost their child? How could they have been so negligent?

autism shines and autism wanders
This was right after we had lost Casey. He had wandered to where there was a river.

Losing a child is a pain no parent should have to feel, and it’s one I can’t even begin to comprehend. To make matters worse people who have no clue what it’s like to parent, much less parent a child with special needs, weigh in on the mistakes of parents whose lives they have no understanding of.  Can you imagine that? The grief of losing a child compounded with the guilt of being told it was your fault. And I’m sure that these parents feel that if they were there, this wouldn’t have happened. If they had not looked away for one minute, they’d still have their child. I’m sure the guilt they are feeling themselves is more than any of us could ever begin to imagine. They don’t need other people adding to that. They need to be told that it’s not their fault. This could have happened to any of us.

And it’s not their fault at all. People with special needs have a tendency to wander. It’s seen most in the autism community, but the Down syndrome community, the Alzheimer’s community and others have their share. I thought about writing about the time we lost Casey. There were too many scary instances to just pick one. Abby has just begun to really walk, and now she walks AWAY.  When I worked with people who have Alzheimer’s disease, we had to make sure all the doors were locked or the residents would wander away. One time, a gentleman did. The door wasn’t properly locked and the aid thought the nurse had him. Neither did. He was found down the street, sitting on a bench, having a stroke.

Being a parent of someone with significant special needs is tough. It means every guard you put up when your children are toddlers never fully comes down. You never stop worrying. You never get a real break.  Think about all of the times with your toddlers when you put them in front of the TV, sat them down with a book, or with a sibling so you could get a shower, go to the bathroom or even get online for a minute or two. Those two minutes are the same amount of time it took for Mickaela Lynch to wander away.  Did you ever wake up to find your child had awaken before you? This is what happened to the family of Owen Black. His body was found a half a mile away from his home.  Children with autism are not only prone to wander, but they are drawn to bodies of water.

When the unimaginable happens, we want answers. We want to believe that something like this could never happen to us. We want to believe that it’s the parents fault because that gives us some control when honestly, there is none. From everything I’ve seen, these parents were GREAT parents. They turned away for a moment, like any of us do, and tragedy happened.  These parents need compassion, they need love, they need our prayers and our support.  Please join with us today in an outpouring of love for the families of Mickaela Lynch, Owen Black and Drew Howell. Please read and share the posts of other bloggers here: Outpouring of Love.

To learn more about autism and running visit: National Autism Association. To help families like mine who have children who are prone to wandering, visit: AAWARE .

If you have children with autism or other disabilities who are prone to wandering,  make sure that your neighbors are aware of this along with the local police and fire departments. There is information on how to do that AAWARE.

And I’m begging you, if you are one of my readers that do not have a child with special needs, but know someone who does, offer respite. Offer a chance for a parent to take a break, to take a nap, anything. You’ll be loved forever for it.

5 thoughts on “Autism Shines and Autism Wanders.

  1. Is there a word that means FEAR to the 100th power?

    That’s how I would describe what I felt when my little boy (with spectrum issues) was lost at Sesame Place.

    I couldn’t call out to him, because it was too loud for him to hear me.

    I couldn’t get close enough to the water structure to look for him, because each time I tried to do so the water sprayed on my glasses and obliterated my vision.

    The lifeguard said there was no way he could shut down the spraying, pouring, machine, as I was begging him to do.

    A friend’s husband thought enough to make an announcement, asking my son to report to the cafeteria, which he did. When my boy was finally brought to me, as I stood there shaking and crying, with an overwhelming feeling of nausea and my head ready to burst, I asked him, “Where were you?”

    He answered with a big grain, “I was exploring.”

    Of course he could not perceive my view of the situation. Even my tears and shaking body didn’t seem to register with him.

    Earlier that day I had paid for a discounted season pass that included the rest of that summer and the whole next summer, but I never went back there.

    I wouldn’t go back unless I had at LEAST 2 other adults with me, and that never happened. Having half a dozen eyes on one child who wanders is a minimum in my world…the alternative is just too far beyond scary.

    Thanks for this important post, Lexi.

  2. Great post. Our neighbor’s 3 yo boy with autism got up at 3am, unlocked the door door, and wandered out into the street. He started crying for his mommy and fortunately she heard him. A 3yo, at 3am. In our DS community, a 10yo boy wandered into a pool and drowned (he is okay). He actually got through the locked fence. People are so quick to blame and to judge that which they have no experience of. It can happen to anyone. Anyone. Thank you for writing about this hot topic.

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  4. Where? Talk to professionals. Get specific information about your child’s condition. DSM-IV (Diagnostic and Statistical Manual of Mental Disorders is a huge compendium of detailed information. Read literature published by respected sources. Check internet resources. Connect with other parents whose children have similar conditions. Seek out a support group from the websites listed. Talk with teachers and school officials. Schools get special funding to help special needs children. The Family Independence Agency (FIA) are usually very good resources. You will need your physician’s verification of condition to receive special services. But if your child has a special need, you are entitled to assistance. Get all the help you can for your child and for yourself. You need and deserve it. If you have problems getting services, find care-givers who will help you. You are your child’s best advocate. I can’t overemphasize the need for a support group. If you can’t find one, start one.

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