Friday, July 22, 2016

Things I can't think about...but I do anyway

If I want to sleep at night, to ever let Janey out of my sight, to not spend my days in worry beyond worry, there are certain things I just can't think about.  And most of the time, I am able to do that.  But not always.  Sometimes, those things are in the news, or something happens that stirs up the thoughts, and wham...I am thinking.  Boy, am I thinking.
If only the brain had an off switch...

You all probably have read about the policeman in Florida who shot a caregiver of an autistic man, and explained he was actually aiming for the man with autism, and missed. (link here)  There's a lot to process there, but my mind went to the many times Janey's lost it in public.  I can picture her trying to hit or bite a caregiver, or Tony or me or her brothers, and what it might look like if a law enforcement officer came across the scene at the height of it.  I think she's a little protected just by being female, because right or wrong females seem to be seen as less of a threat, but still...my thoughts are not ones that are easy to think.

My friend Michelle and I have joked a lot that we have to live forever.  And the joke is partly a way to not face the reality that we won't, and that some day, our children will not be in our care.  Both our autistic daughters have two siblings.  For those siblings, the knowledge that they will likely someday play at least some role in Janey's or Lindsey's lives---I won't speak for them, but I am quite sure that knowledge plays a role, if even subconsciously, in their life planning.  But the alternative, a group home---well, that is something I try not to think about.  I am sure there are good, even great, group homes out there.  I know there are.  But there are others that are not as good.  This article (link here) about group homes in Massachusetts was not an easy read.

Janey's current psychiatrist told Tony and me in very clear, certain tones that Janey is at extremely high risk for abuse.  I feel like throwing up every time that thought comes into my mind.  He said girls who are non-verbal have a rate of abuse that is so high that it's almost a certainty.  Well, what do you do with knowledge like that?  I have to feel glad, here, that Janey lets people know when she doesn't like what is being done.  I want her to keep that voice.  The other day, for some reason the word "tap" came up in a conversation Janey was listening to.  Immediately, she said "tap" and tapped her head.  I know that is something taught in ABA.  I know the reasons for that kind of teaching, but I'll be honest---it was a bit troubling to see.  Do we really want our kids to respond instantly when told to do something?  

I am lucky.  I feel as close to total confidence as I can feel in Janey's schools. She is safe at home.  She is loved and cared for.  I wish I could simply close out the worries, the fears, the thoughts.  But I can't.  I don't think any of us who love a child with autism can.

3 comments:

Sabrina Steyling said...

I know there are very good group homes out there, but unfortunately there are bad ones out there, just like that article discusses. The town where I work has many group homes, and several residents visit the library where I work. I was taken aback on more than one occasion where this one older resident walked to the library but, since she was worn out from the walk, needed a ride home - and the staff at the group home flatly refused to come and get her! The local taxi service also refused her, and my coworker ended up having to have a local police officer get her back where she belonged. While I know this isn't physical abuse going on here, it still pains me that this intellectually disabled woman was ignored by those who are supposedly caring for her. It left a bad taste in my mouth about group homes, even though, again, I know that they aren't all like this.

David Fee said...

I been thinking my daughter's future and similar fears come to mind. This is a generalization but I think there's some truth to it. Males with a moderate to severe form of autism are likely to be passed over by females. Females at a comparable level of ASD are more likely to attract certain types of males and I don't mean guys who are looking out for the long-term well-being of females. Parents of average kids can be overly protective as well but my daughter needs a higher level of protection.

I also worry as my daughter gets bigger, stronger and faster that something she does in public may be misunderstood. I had a taste of it already where a guy was calling the cops and I was trying to tell him my daughter has autism. He didn't care which made me angry and I'm not sure how it would have ended if the cop had arrived. The cop in story cited was responding to a caller claiming there was a suicidal man with a gun- none of that was true but the cops in question made up their minds based on the call coloring their judgement. I'm usually pro-cop but police are trained in command presence and taking charge of a scene and not wavering. They sometimes shut out others trying to tell them something because they encounter a lot of liars and don't want distractions. This is especially true in high stress situations. Most people don't notice it but I have.

Rebecca Yourig said...

Look up Hannah Cohen TSA and read the horrifying experience she had at the Memphis airport on her way home from StJudes for brain tumor treatment. Right in front of her mother .

Being female reduced the chances of certain kinds of abuse, yes, increases certain other. Sadly most mentally disabled people are abused. Cruel society we have and had.