I can’t keep to the sidelines any more. I need to speak my
mind, and not on someone else’s page or story or post. I am getting more and
more frustrated finding people to speak for me, and have finally realized
(yeah, I am slow like that) that only I can speak for me.
I am a stay at home mom of a 15 month old girl (let’s call
her Kitten) and a four year old boy (let’s call him Monkey). I have battled
major depression for most of my life, and am on meds.
My son was diagnosed
with Autism Spectrum Disorder (ASD ) a few months ago.
He is functioning socially at roughly a 2 year old level.
His speech is a little better, but still delayed at least 18 months. He attends
a preschool that provides him with some speech, occupational and behavioral
therapy. We are immensely lucky to have found this school. They can take him
for kindergarten as well, so we won’t have to deal with the trauma of changing
schools for this year at least.
The thing that got me writing today is my reading of so many
blogs and Facebook posts about the causes, treatments and cures for ASD,
including current, debunked but somehow not dead, and promising possibilities.
I have been pitied, lauded and disdained in my parenting of
Monkey. I have felt judged (and been judgmental and defensive in return) when
reading blogs by ASD adults and parents. I doubt that was the intention in most
cases. I can’t blame anyone else for my gut response to what I read. I am a
grown up, at least in theory, and I try to keep a level head and an open mind
(not so open that my brains fall out, though).
I recently have thought about the debate on whether ASD is a
condition to be treated, pitied, cured, celebrated or whatever else one might
consider as a response to what is a very confusing and sometimes scary,
sometimes astonishing, range of traits and symptoms.
I don’t celebrate my son’s ASD. Maybe I should. It is harder
when he poops in the tub, then paints with it, or has screaming meltdowns and
slams his head into solid objects at bruising force. I can’t celebrate his struggle to communicate
or his frustration with those things that other ‘neurotypical’(NT) children
find simple, for the most part. But his fascination and focus, his lively sense
of wonder and humour, and his affectionate nature are a joy to me. I don’t know
if he would still be who he is without the ASD, and I am not likely to find
out. This I accept. I embrace the child and human being he is.
I want to help him. Not cure, not change, just help. I want
to be a good mom, to direct him, to love him, to reassure him, to enjoy him. I
don’t know how to get past the behaviours and the thought processes, whether
dysfunctional or not, that separate and isolate him.
I want him to lead a happy, fulfilled, productive,
independent life, in that order. If he requires some kind of meds, I will go
there. If he needs anything from me, I will do my best to give it to him.
Happy, I think he can be no matter where we get with the
various therapies and approaches. Fulfilled follows from happy, I believe; I
want him to go as far and live as fully as he is capable of. Productive is
secondary in that he will never be less or more valuable for what he
contributes to the world. I would like for him to feel that he is a valued
person and member of the human race regardless, but I could hope for him to
contribute as much as he can and wants to, without limiting himself because of
his ASD or anything else. Independence? We will see. He certainly has a strong
will and a sense of himself that is sometimes surprising, and that is a wonderful
thing. I want everyone to see and celebrate the amazing person he is.
My son. Himself. He is not Autism. He is autistic. It is an
integral part of him, but not all of who he is. I want for my son what every
parent wants. I have learned to let go of the hope that he might have an
ordinary life. I guess we will have to see what we can do with extraordinary.
