There’s something I have learned over the last three or four
years about Autism and Aspergers and it won’t be what you think.
I have learnt more about me.
I have learnt more about who I am as a parent, adult, man,
human, than I think I was ever prepared for.
I am constantly surprised by what I learn about me in the throes
of my son’s autism.
I posted last year that I wasn’t a good parent sometimes,
I’m not. No one is perfect all the time. Sometimes the stress of our own life
just gets unbearable and, throw an autism tantrum into the mix, all you want to
do it scream, yell, hide, run – have a tantrum yourself.
Often, that’s exactly what happens and your kid wears it.
But you know you can’t so you just deal with it, tomorrows a
new day. What I wish I had of autism is the ability to not comprehend that when
I have a tantrum, it’s not normal and I can forget about it just as quick as
having it.
I have learned that my son will not abide by MY rules or way
of life. He has to find that for himself. I can only guide him where I think he
needs to go or try and highlight the errors of his ways. But isn’t that our job
as a parent anyway, regardless?
When Zac is on a tangent, theres no talking about anything
else. Do you know how many times I have asked him to stop and listen to MY
question? Too many to count. What I have learned is “How dare I?” How dare I
interrupt what is important to him. No, I have learned that I have to wait to
get my question in.
Last night was a prime example. His friend Mitchell has a
big Chipmunk (from Alvin and the Chipmunks) and he was talking about wanting
one on the way home. And talking, and talking.
Renee tried to ask him a question about something else,
completely outside his tangent.
She got no answer.
And this is how it is. I can’t make it change. Nor should I
try.
But I can challenge, tha’ts the difference.
It’s probably the one thing I liked in the movie “Extremely
Close and Incredibly Loud” that referred to the aspergers the lead character
had. His father (Tom Hanks) devised a challenge where the boy had to walk
through Central Park asking for clues to the existence of a sixth borough of
New York. There’s a line that goes something like “He will have to ask every
person he meets for help, the one thing he doesn't wnat to do its genius.”
And it is. The boy’s greatest inability was to interact
socially, yet his father creates a challenge, to challenge the behaviour that
most challenges him.
It’s genius.
I come from a Christian faith. Where my faith is at
now-a-days, I’m not sure. What I have discovered is that autism challenges that
faith, challenges my understanding of God. I don’t blame God, but I also don’t
believe that Zac will be healed from it, like some have suggested, ever. E.V.E.R.
Zac has it. It can’t be taken away. It can’t be healed. It
can’t be changed. I accept that. Perhaps the autism has even allowed me the
opportunity to challenge my own belief, my own faith. I don’t know, but what I
do know is that autism can be shaped and influenced, but not changed. Not taken
away.
But I, ME, WE, can’t change it. We can’t take it away. No
religion, belief system, psychology, ism, or therapy will ever take it away. I
accept it. Many don’t. Many can’t.
And we wouldn't want to change it.
Early intervention is about working with those who are
skilled to do so. The occupational therapist that worked with Zac, worked
wonders. This kid can use his imagination now in play scenarios, where 18
months ago he couldn’t imagine inanimate objects as something real; a faceless
doll look-a-like was simply that.
What I think, with hindsight and perspective, is that as
much as I have challenged Zac, he has challenged me. Although at the age of 4,
when he was possibly at his worse, I would not have said that. No, there is no
way I would have said, 1. That I was being challenged and 2. That I appreciated
it. Quite frankly, I wanted to throttle Zac and myself when he had a meltdown.
I wanted to run away and hide. I wanted Renee to deal with it all.
We hear stories of parents that involve their kids in
programs that force changes in behaviour. This is my opinion, but I feel
sometimes these are simply about the parents having control or exerting their
control. Forcing a change. There are opinions on both sides of the fence
regarding these programs and I haven’t experienced it first hand, but when I
look at the pros and cons, the cons concern me.
Look, don’t get me wrong, my point is that as a parent, we
have to relinquish some of the control when it comes to autism. It is just a
reality we have to face that sometimes the autism is in control and it can’t be
changed.
I have learned that to be a parent to a child on the
spectrum, you will be challenged. All the rules you lived by as a child, the
ones your own parents taught you – gone out the window. All the ways in which
you want to raise your child, the way you said
you would raise your child – gone. The rule book – non-existent.
My step-dad, Greggles, was a tough man when I was young, but
like a good wine, has matured with age. Though the rules he lived by, sometimes shine
through today – still. He hates it when you say “What?” instead of “Sorry” or
“Excuse me”. Manners, he says. It’s all about the manners. Zac couldn’t give
two hoots about that. It’s not important. He has manners where it counts.
“Please”, “Thank you”, that’s what’s important. And he has those rules down
pat.
The control I try to force in many aspects of my own life
have slowly been chipped away. I don’t find that I care as much about certain
things as I did once before. Things like the cleanliness of my house or that
everything has a place (as my Nana taught me), have gone out the window. You
can’t keep a house clean with an autistic kid...heck, any kid for that matter. So relent.
The autism which shapes my sons behaviour has shaped me in
more ways than one and I am now trying allow it shape me more, so that I can be
the best parent for Zac, but of course I will still challenge him, because
thats what I do best!
