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Sunday, May 6, 2012

Hard to read --- lost to wandering

I happened upon this article the other day, and despite trying hard to stop reading it so I would stop crying, I couldn't. I read all the stories of autistic children lost to wandering. It's a very, very scary thing. I was struck by the fact many of the children were 7, and it made me think that it's a tough age for autism. Janey is developing her own will, and wanting to do her own things, and she is starting to attempt to "elope", as I have heard it often termed. Thankfully, her successful attempts have been very few so far. But several times she has made it into the cellar, and one horrible time she got away from Tony as a drug store and went to the car by herself. He watches her like a hawk, but it takes one second of distraction. It happened once at school, under the watch of a teacher I would truly trust with my life. And lately her special ed teacher has reported she's been running in the courtyard where they have recess. The school was designed in the 50s, but it was like it was designed for autistic kids, as recess is in a huge courtyard in the middle of the donut shaped school, so running isn't as serious as it would be, but they have worked out a game to work on it---yelling "STOP" after letting her run, or Janey and one teacher running while the other yells stop. We are all aware how vital the lessons about eloping are.

And yet it can happen. My heart broke reading those stories. Many of them were spurred by a child's obsession, often with water. You combine a child that can get obsessed with something like no-one on earth, a parent that might have gone nights without sleep, and you have a recipe for disaster. Your eyes close sometimes when you haven't slept. Or you succumb to the temptation to take a second for yourself. You start reading that interesting article on the internet, or looking at a bird or tree while you're outside. And your child is attracted to something, and slips away. Parents and teachers of autistic kids are being asked to be superhuman. No one person can do it. That's where my post yesterday comes in. The need to respite, for support, is not so the parents can sit around eating bon-bons. Many times, while Janey is at school, I sleep. I do the laundry I can't do when I am with her, as it's in the cellar. I talk to my boys. I pay bills. All things other parents do, but things I literally can't do unless someone else is watching Janey. It's why I love school, and after-school. They save my life, and possibly Janey's life. It's also why anyone working with autistic kids deserves our utmost respect, the pay they have earned and their own respite too.

This is a bit of a rambling post. My mind doesn't stay organized when thinking about my biggest fears.


cee said...

What surprises me about that blog is that a lot of the deaths are more or less standard pediatric accidents, intensified by the fact that a child got farther faster and didn't respond to instructions or understand risks at an older/stronger age than the toddlers who are, sadly, usually the victims of those kinds of drowning deaths. Water is so dangerous for young children! I know a mother of a (neurotypical) three-year-old girl who wound up performing CPR (successfully - her daughter's fine) after she went to grab the phone while her daughter was in the bath - she was gone for maybe a minute. Terrifying.

It makes me kind of mad that the blog presents these as casualties of autism, not as casualties of bad autism services, because I think you're 100% right that it's an impossible job for one or two people. My partner works in direct care and he comes home after a shift and goes straight to sleep from exhaustion. The fact that we ask parents to do it full time for the rest of their lives is criminal - I hope that autism direct services keep improving and your family's options keep expanding.

Kim said...

Our Abby would wander away from us in the blink of an eye! One time at an air-show we actually had the mounted police looking for her...I had turned my back to lift our youngest from his car seat to the stroller and in that instant she was gone! We've since developed a system where I yell Abby say " eeee" (cause she's non-verbal) and she will yell "eeee" back. To this day all I have to do is yell and she will yell back "eeee". We practiced a lot in the house, yard, and neighborhood. Made it a game. We also never greased our doors, each door has a distinctive squeak and I can tell you at any moment what door is being opened. Good luck! Email me if you ever want to chat...