Thursday, May 22, 2014

Inconsistency Thy Name Is - Me

You know sometimes I think anyone reading this blog would have to come to the conclusion that I am the most inconsistent, changeable  (hell fickle) person in the world.  In one post I'm talking about my son's irreversible brain damage and then not one month later railing at anyone considering him damaged.

I'm still a work in progress there is no doubt.  Part of me still sees FASD as the enemy, as something horrible that desperately needs to be eradicated.  That part is ruled by fear - it not only hates to see how much my son and my brother struggle, how hard they have to work for every small gain, but it constantly extrapolates into the future what terrible things may befall them.   When I step out of that fear, that gut level visceral reaction, I can see that is the very view making the world so hard for them.

And that is a horrifying thought I need to just sit with for awhile...

I, no matter how much I love them, am part of the problem.

That thought alone is enough to be rather crazy making.  But I believe it.  If I am busy hating something unchangeable about them then I am hurting their sense of self worth.  I am rejecting at least a part of their very identity.  And I am supporting a world view that says:

Your existence is wrong.
Your way of thinking, of being, of experiencing the world is wrong.
You need to be changed, corrected, fixed and prevented.

What a horrible horrible way to treat someone you love.  What a horrible way to treat anyone.

So I keep fighting that view of FASD personally as well as publicly.  I keep reminding myself - even as I tell others - variation is natural.  There are scientists who speak very eloquently on the importance and value of biodiversity.  Unfortunately I'm not one of them and so I struggle not only to communicate it but sometimes even to understand it.  Even through that struggle though, I do believe it.

So please, bear with me here.  I'll get better.  And all of us together will reshape the world to a place that really understands and values the strength that difference can bring us.


  1. The FASD "way" very, very often leads senseless violence and destruction when "their" inability to control their impulses wreaks havoc.

    There is a little boy with FASD in my daughter's class who regularly overturns desks in frustration, calls kids rude names, steals their belongings and then apologises profusely and wants to be friends. Five times a day. My girl required stitches when that particular boy lost it over something minor, threw a chair, the leg of which grazed her cheek.

    I get that the boy cannot control his impulses and is doing the best he can. I also get my my kid wants nothing to do with him. He can't be removed for bullying because of the FASD - he can't control it.

    My kid is required to be polite to this kid - as civility stops the world from descending into anarchy. She isn't required to like him.

    The FASD way? Leaves a trail of destruction in it's wake!

  2. Susan, I am so sorry your daughter was injured and that she (and you) have had to suffer through such a frightening and painful incident. Impulse control and difficulty understanding abstractions like "ownership" are symptoms of FASD. However, bullying and violence are not. Those traits are present in many children and tend to be driven more environmentally than neurologically. Clearly the environment he is in right now is not a good fit for this boy if that is the behavior it is producing. And for the school to say there is nothing they can do is absolute baloney. It is the schools responsibility to keep your daughter, this boy, and all of the other students safe while they are at school. In the wake of an incident like the one you describe changes should absolutely have been made. I don't know the situation well enough to say what those changes should be - but I would agree with you - to do nothing is unacceptable. My son is also impulsive at times. He does not throw desks or steal - although like most children of 7 he has called others (and been called) some unkind names. I would never agree for him to remain in a classroom setting that provoked that kind of behavior from him. His impulsiveness is more likely to take the form of breaking into song in the middle of reading time usually because there is some background noise that a neurotypical person would just screen out but that he cannot ignore. Our school has helped him solve this problem by playing soft classical music in the class room when possible and making noise cancelling ear phones available for him when it is not. I know this school year is coming to a close soon - I hope for everyone's sake your daughter's school makes the changes necessary to help all of the children involved have a safer environment next year. I'm glad you encourage your daughter to remain polite. I teach my son he must be polite to everyone as well. Not everyone he meets is going to be his friend but they all deserve common courtesy. Just as he does.