Wednesday, 23 January 2013

Don't ask why...

I've been thinking again (dangerous habit) about the how and why of people.
I never have really understood other people. I never felt like I fit in, like I was thinking the same things or feeling the same things in the same way they were. I was always wondering what motivated them to do things? How did that work? What made them react that way to those motivators?
Big questions without perfect answers. And then my son was diagnosed with autism.
This was not unexpected at the time, but still scary. I never felt quite like I measured up to the task of finding ways to help and nurture my son before we noticed something was different about him, let alone after we knew that he was, as they say, "wired differently".
Now, I have a few anomalies in my brain function myself. I have already mentioned that I suffer from depression and OCD (Obsessive Compulsive Disorder). I was left handed but forcibly "switched" early in my school years. I get migraines that range from mild to severe, with weird visual and mood effects that I still can't really describe. I also have PTSD (Post Traumatic Stress Disorder) from incidents of sexual abuse in my past. I have a high IQ and was identified as a gifted underachiever (i.e. smart but lazy) in school. I don't remember learning to read, because it happened sometime before I turned 3.
So I never thought of myself as normal. I always wondered if I should have kids, given that I am not the most stable person, even with the meds that keep me more or less in control. What if I had my meltdowns in front of them? What if they turned out to have inherited the same screwed up brain chemistry? What if my inherent introversion kept me from giving the attention they needed? What if they were morning people?
So now I had a kid who was "wired differently". How did I approach that? How did I nurture his talents, teach him to cope and thrive in the world? I read a lot. I researched. I was appalled and delighted by the information out there. What disturbed me was the lack of answers to the most basic stuff, and the continual search for a "cause and cure". When I was told about my Monkey's condition, WHY wasn't really on my radar. If there was a cause, it was too late to prevent or change, and if there wasn't an identifiable cause, then it was irrelevant. I needed to know how to teach my child to make his way in the world, not cure him of his difference. I still don't care why, except in the context of, no, it wasn't my fault, or my husband's fault, or vaccinations, or lack of vitamin D, or whatever the theory of the day happened to be, and thanks, I don't really need that latest article by the biomed/dietician/antivaccination/pseudoscientific snake oil salesman thanks, I'm good.
The whys that really matter are the ones that my son has the only certain answers to, and he is not currently able to communicate those to me, nor have I been able to figure them out. Why does he smear his feces on the wall, his bed, his toys, himself? Why does he dump his belongings into piles, but get made if his carefully formed lines and patterns are disrupted? Why does he have overwhelming, terrifying emotional and cognitive meltdowns? Why does he mix liquids and solids and powders of all types into great sticky slimy messes, then play with his toys in them? Why does he slam his head into things, punch himself, hurt himself deliberately? Why does he jump for hours on the couch, but not on the trampoline? Why does he eat one bite from each piece of food, then leave the rest, no matter how much he likes it? Why does he not formulate that question, why? He has never asked why something is or is not, just reacted to the concrete facts.
All of these whys are questions I ask, trying to understand what he needs to cope, to be happy, to thrive. I need to know how I can stop him from doing some of the things he does, like the smearing and the self harm, without being cruel or depriving him of ways to cope with and learn from his environment.
I have had some answers come to me from the other autism parents who have put up with my clumsy social skills and become my friends and comrades in this quest to understand. I have had epiphanies from reading the writings of adult autistics. I have come to relate my son's behaviour to the differences in brain function that have been noted, from sensory related issues, to stimming. I am moving towards an understanding that can encompass all of the things I have asked why about since we noticed all of the little things that made us seek a diagnosis in the first place.
I have been verbally and virtually shot down for asking some of these questions. I have been told that I can never understand because I am not like him. I have been advised to just let him do what he does and not ask why, and have been given the opposite advice, that I must control him at all times to keep him safe.
I am trying to navigate this maze of expectations and advice. I refuse to stop asking why, because I want to know what my amazing, unusual, autistic son needs. I know the answers will never be complete, but that isn't going to stop me asking. And maybe one day he will ask why. And maybe I will have at least a few answers for him, or a direction to point to to find out.

1 comment:

  1. Don't stop asking why until you have all the answers you seek.