Sunday, June 20, 2010

The Continuing Story - small changes

A family like ours has a huge potential of bouncing back, but can nevertheless be stressed too much.
Like in a chain, the weakest link will snapp when the chain is stretched too long.

My autistic son was doing so well, that he invited someone over to celebrate his birthday.
It was a huge step forward for him and we all enjoyed the presence of the student in social work who meets him once a week for an hour outside the home to activate him.

It was a real joy to celebrate his birthday in a new way.

With the ongoing events, the stress caused by it, and the busy time with each day at least one appointment for me, I knew the chain would snap.
It was not if, but when, and how often and how serious.

I've stopped preparing for it, because I know how I'll react and I sure know how he'll react on certain situations.

He had an appointment with this student in social work for his weekly small event.
Usually it involves a short walk and sitting down in a small restaurant and drinking something.
He knows how to behave in a restaurant, but he's sensitive to noises, lights and smells, so it's a new adventure for him, each time a new one.

I was ready to leave with his brother to his first meeting at a new school to apply for a place.
His things were ready.
All lined up: trousers, socks, belt. Polo. Coat. Money, bustickets, ID, phone, doorkey.
He himself was ready to dress and leave.

We were leaving.

He was OK we would have to go about 10 minutes earlier, he knows how to lock the door.

Nothing was unsaid, nothing not ready.

And there it happened. Out of the blue he suddenly was stressed out. Didn't see his belt, which was right in front of him.

I always leave at least one bus early, so I had time enough to calm him down.
But like always the stress had accumulated inside him and here it was: unlabeled, uncontroled, making him afraid for his own emotions, chaos in his mind.

This time I could calm him down, but with the unwanted result that he cancelled the meeting with his buddy, the ever kind social worker student.

We were just in time at the meeting at school.
My other son was accepted without any problem.

At home I was welcomed with many sorries.

This is what happened the same way a few years ago, when stress mounted too high at school and he couldn't cope anymore.
Autism is a silent killer of plans for the future for many kids with an autism spectrum disorder, and so it is for my son.
That time he went into regression and it took me almost 3 years to get him on top of it.
I could, because the flexibility of puberty helped me to influence him in a positive way. He tried to define himself while comparing himself with other puberty driven young males, so I could use that to built him up again, pull him out of his 8 year's mind, through 12 years, to the 18 he is now.
Each thought, each gesture, each moment... one by one, step by step.
An exhausting struggle of motherhood to conquer autism in it's core.

Now he's almost out of puberty, the rigidity of classic autism has gained a firm place in his being. He's a kind person, but the balance of his identity always trembles.
He looks rocksolid. He's huge in length and volume. His voice is heavy and it wouldn't be a problem if he would develop it to sing. I'm sure he'd do well.
But behind the solidity sits a small boy, overlooking the wide, wide world.

Right now he's doing well again.
Had a good laugh yesterday with the girls about something funny, gave a compliment for a nice hairdo, took 20 minutes to decide what he wanted on his bread, and made me a cup of coffee.

But I see his balance trembling.

And I hope those who want to judge my motherhood will see that I'm a good mom, made the good decisions and will leave me to do my job the best way I can. Learning something every day, observing, registering.
Oh, I've made my mistakes, but I've learned from them.
I know it's easy to judge people, especially with a firm set of requirements in your heads and a fixed frame of mind to observe families.
But we're different.

Autism doesn't rule the family, like one of you stated.
It's accepted as an integral part, like the individual characteristics of the other children are.
Drawings are on the table, schoolbooks, beads and more.

We know our strengths and our weaknesses.
We're aware of them, each day more than the day before.
That's why we move on, enjoy each day as a new one, living the wonderful moments like we're experiencing a miracle. Incoorporating our problems in the past, while keeping the lessons we've learned.

I hope none introduces so much stress that my son falls in regression again.
He's beyond the age of flexibility and determining himself.
I'm sure you won't be able to help him grow. You can medicate, institutionalise him, isolate him when he displays behaviour you don't like or can't deal with. You can take his family away, his reason for living.
You have the power to destroy his being, and leave him as a depressed small child, apathic in the light of the world and his own future.

Don't tell me I haven't warned you.

I can teach you how to observe, I can teach you tricks, but I can't teach you the power of a family to raise an autistic boy and to make him reach out to the world and grow.

So see us the way we are and leave us to work on the future of the children.

Lift the stress instead of increasing it even more, and you'll see my son grow even more. When you watch carefully to see the small changes.


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