Monday, September 09, 2013

The Last Resort

Not long ago, while working on my memoir, I was thinking about a story that appeared in the news back in 2006, shortly after the boys were diagnosed with Fragile X Syndrome.  It was about a woman in the United Kingdom who forced her 12-year-old son with Fragile X off a bridge, and she followed him, both falling to their deaths.

I had only known about Fragile X for a couple of weeks.  I didn't know yet how it would envelope our lives.  But here was a woman who had felt things were so hopeless for her son's future that she took him away from the world with her.  She despaired when she saw a world that, if he were left without her protection, would abuse and torture her vulnerable son.

I have to say, that didn't fill me with confidence in our future.

Now - seven years later - I see a story in the news like this one - about Kelli and Issy Stapleton - the mother who attempted to kill herself and her autistic daughter - and I can easily understand what Kelli's mindset might have been.  Her daughter was aggressive.  Mostly Kelli took the brunt of the physical toll, because she placed herself there - between her daughter and the world.  She did that because she knew that most people, and I mean, 99 out of 100 people she came in contact with, didn't understand Issy's aggression.  99 out of 100 people see aggression and think, violence.  Intent to harm.  Being a bully.

Issy' aggression (I am guessing - knowing she has autism, I'm making an educated guess), like my son Zack's, is more about self-defense.  Self-defense against forces that those of us who don't live inside her or Zack's head don't see.  Defense for themselves against themselves, a lot of the time.

If you see someone with autism hitting himself in the head, you might think "oh that poor person, so tortured by something inside him or herself that I can't see."  If that same person hits another person in the head, you are more likely to think "What the crap?  He didn't do anything to you."

An incredibly difficult concept, I know.

Another great example that helps identify the emotions that might be swirling through a special needs mother's mind is the book My Sister Dilly by Maureen Lang, an author who greatly inspires me.  It's about a woman who tries to kill her severely disabled daughter after resources run dry and she loses hope.  It doesn't give excuses.  It simply tells the story of that mom's fall into the pit of despair, and how both she and her daughter survive it.

Kelli has spent Issy's life protecting her from a world that does not understand her and probably wouldn't try to, before condemning her for her aggression.  And when she couldn't do that anymore, she did the only thing left she could think of to protect Issy - she tried to take her away from this world.

I don't think she thought she was hurting her daughter.  I don't think she saw it that way at all.  I think she thought she was saving her.

I get how insane that is.  I get how wrong it is to kill.  I just understand, I think, maybe better than some, where Kelli's mindset might have been and what her reasonings were.  I can easily imagine what her life with Issy was like.  There have been times when, to keep Zack from lashing out at others when he was overwhelmed and/or overstimulated, I permitted him to chomp down on my arm.  I've put myself between him and the clueless world.  I want to protect him.

I am deeply thankful for the help I've received along the way, because I know that is what separates me from Kelli.  I haven't reached the end of any ropes.  I'm supported and loved and so are my kids.  I hope a tragedy like this results in better understanding and compassion of people with autism and how much we don't know about what goes on in other families.

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