Wednesday, December 9, 2009

To whom it may concern

"To whom it may concern: 

"If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky's. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible. 

I’ve thought, possibly obsessed, about Will’s future for years.  At a dinner, with three other moms last week, the topic came up.  One mother said that she thinks about her son’s future daily.  As do I.  Another mom said she doesn’t think about yet.  The elephant in the room was aggression.  All of our boys are pre-puberty although it’s getting closer and some of the boys are aggressive to varying degrees.  And from what I’ve heard puberty can bring on aggression.  I wouldn’t classify Will as aggressive necessarily; but he pinches and occasionally bites and disturbingly, he is starting to use his size and strength to make his way to things he wants.  He’s only ten but he’s a big ten and I think he takes after my side of the family.  I think he’ll be over 6 feet tall and I can already see that he’ll weigh more than 200 lbs.  I realized this day was coming quickly last summer when I tried and failed for the first time to put medicine in Will’s eye by myself.  He still sits on my lap and wants me to give him a piggy back ride down the stairs.  I don’t think either of us are quite ready to give that up but he’s huge and it’s absurd when he sits on my lap as thankfully my lap isn’t really large enough for him.

I remember judging other parents, when Will was an adorable three year-old, for putting their children in residential care.  I decided that Will would live with me until I died.  But I’ve learned a few things in the ensuing years.  I don’t judge anyone anymore for making those kind of choices.  I have a friend who is occasionally frightened of her son and I know someone whose daughter had to move to a group home after she broke her mother’s leg, back and ribs.  I can’t imagine Will turning into someone dangerous but what if my other children were threatened?  There is no easy solution.

I changed my plan for Will’s future.  I’m going to set up a group home for him; one where I can choose who works there and one that he will never have to move from.  I can’t put him in the position of losing a parent and losing his home at the same time.  If placement ever becomes a crisis compromises are often made.

Will is like the sun in our family.  Everyone orbits him.  Most of what we do is for his benefit.  We live here because it’s better for him.  My husband has sacrificed aspects of his career for Will.  Where we vacation, our activities, most of what we do takes Will’s needs in consideration.

He’s worth it, of course.  He’s funny and lovable.  Bri and I often exchange delighted looks over his head.  But I can’t parent him the way I want and it’s really hard for me to wrap my head around that.  I encourage independence early on.  Bri started making her own lunches when she was in first grade, Jake in kindergarten, Lizzy, well, Lizzy is so slow in the morning I make half of her lunch; hopefully eventually she’ll do it herself!  And Will will make his own lunch eventually as well, even if it takes me years to teach him.

My heart breaks for Sky Walker and all the future Sky Walkers.  They are out there.  I’ve followed his story and I’m frightened about all the potential pitfalls in Will’s future.  Imagine a huge man having a temper tantrum in public or pushing his way past crowds.  Most policemen don’t know how to interact with children or adults with autism.  Some people with autism can be aggressive and violent without understanding they can really hurt someone.  Will’s infrequent temper tantrums are a little funny because I think he’s trying to get a reaction from me.  The first time he threw himself down on the ground he carefully started banging his head on the floor.  He’s become a little more enthusiastic about it now.  What would I do if he was seriously trying to hurt himself?  I don’t know.

1 comment:

Anonymous said...

I mainly worry about making sure Kim and I make it .... you and Jared have an even harder situation with Will.


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