Autism...cannot be controlled

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!

Praising the EXTRA - ordinary

I think that the comment made in The Australian Autism Handbook is true.

“Most parents only celebrate when their child achieves the extraordinary.

For us, achieving the ordinary IS extraordinary and we get to celebrate everyday! -Barbara Morrow, mother of Alistar.”

We get so wrapped up in the things our child can’t do that we sometimes miss the moment they do something they ordinarily wouldn’t, because we think it’s normal.

I have talked about how I challenge Zac. Sometimes I do it at the wrong times, with the wrong behaviours, but I do it because there are things he needs to learn. Valuable lessons that will help him integrate with mainstream society. Don’t get me wrong, he will still be different, but I want him to know rules exist, even if he can’t abide by them or chooses not too, which we know acutely he will do.

Temple Grandin talks a lot in her seminars and books about the impact her mothers structure and routine had on her growing up. She also talks about the unrelenting persistence of her mother to “teach” important life lessons like using your manners, important behaviours in the 50’s.

In one video (available on youtube: http://youtu.be/2wt1IY3ffoU at about 18 mins), Temple talks about how it’s difficult to differentiate between a sensory processing problem and a behavioural problem, but bad behaviours should not be tolerated. Temple had to use her manners, eat with a fork, go to church; all expected behaviours of a child in the 50’s. I imagine that her mother was not one to give in to tantrums and “I don’t wanna’s”.

Raising an autistic child is demanding enough, but identifying these sensory processing issues can be really hard and it can be easy to blame one over the other.

There are things that Zac does which seems more like “laziness” than sensory problems, which leads me to the reason for this post; he achieves because we have pushed him to. We identify when it’s behavioural rather than sensory and challenge him to do greater things, which leads to him achieving what’s considered normal.

Back in October, he rode his bike. The one his grandparents brought him for Christmas in 2010. I envisaged it sitting in the shed rusting to nothing. It’s even “Toy Story” themed, so that he would hopefully obsess over it. No, it just sat in the garage.

I had it in my head he would never ride it. Riding a bike is difficult to learn for any kid, but for a kid like Zac, with little or no co-ordination and an adversity to multitasking, it was easier to settle on defeat without even trying.

But even with all these obstacles in the way, I believe that an autistic child, indeed all children, need to be challenged. Zac needed to learn how to ride a bike no matter how long it took.

I will let the video speak for itself (sorry that its sideways).

The other milestone he has reached is swimming. He had a significant adversity to the water, no matter how much we tried to coax him in. Swimming and water safety is one thing I think all children should know and given Zac’s tendency to wander, the concern is he would wander to the nearby creek or dam and drown. A sad reality many families face.

Last summer, the pool was off limits. Thinking back, the combination of the size and sound of a large indoor pool may have caused a sensory overload, but we discovered our local pool, which is much much smaller and nowhere near as busy.

After a few visits with our friends and their kids, Zac quickly got used to the water, however wouldn’t put his face or head under the water. He did a Vicswim program over the school holidays and when we went away for the long weekend, he was like a duck to water. He loves it!

There’s a time and place for challenging behaviours and some of your child’s automatic responses to difficult situations. Zac’s automatic response to almost everything is either “No” or “I can’t”. Both of these, I challenge. Sometimes he has to see there is no danger in doing something or that he will in fact enjoy it. Getting dressed on his own is something that still elicits an “I can’t”, but he forgets we know he “can” and we just endure the tantrum until he’s finished, its just one of those things. Similarly when at the pool with our friend he wouldn’t put his ears in the water. The sensory overload is that the sound of water in his ears is heightened and the fear water will somehow get inside his head is very real. When he got water in his ear by accident he was quite shocked and said, “Oh no, it’s OK.”

These have been milestones that all kids tend to reach at some point, but they don’t come to my boy naturally so these things are extraordinary for him. The praise that these milestones illicit make us look like OTT parents, but we don’t care one iota, perhaps those that do should look at themselves and how they praise their own kids.

Your kid can do extra-ordinary things, don't let your or others narrowmindedness rob your kid or greatness.