Tuesday, October 20, 2009

The continuing story: The national autism centre

october 20 2009

Even though I didn't feel well, I was feeling better than yesterday and so we decided to go to the appointment at the national autism centre.
We got a description how to get there...for cars...
And when I wanted to use Google maps, it didn't work.

But I remembered when I looked a while ago and thought we would arrive there perfectly well.

My autistic boy was trying to uphold us when leaving, but we got to the train just in time. Alas his dad was really autistic today, and wanted to take another bus to go there.

Well, I've learned not to care too much, otherwise we'll land in a debate, upsetting our son.
So we walked... the right way.
The he saw a delivery service man and asked him where the street was. The guy took a map and to my idea he was holding it upside down.
On the other hand...those guys would know....yea...do you think that too?
Then you should have walked with us. LOL!

Let's say it took half an hour until dad admitted he was lost.
I advice to call the secretary of the centre.

That helped....a bit.
Only when a woman on a bicycle helped us we arrived at the building.
Son was terribly complaining, I was feeling to tired to react.
But I was also very happy we had taken the train one hour too early, because we arrived 5 minutes before time. Yeehah!!
That was 1 hour of free healthy movement in a nice old neighbourhood, with tall trees and leaves to kick around everywhere.

At the centre the secretary started to tell me I should have looked on a map, which I did, and was trying to make me look like the first real stupid non-blonde in her life, when the other secretary stood up and told her that we had been at exactly the same places as she when she came to work at her first day. That it was not our mistake, as she heard many more people going completely wrong.
I could have kissed her!!

Then we had to wait.
And wait...
and wait...

I saw people look from the upper level (it was an open hall), looking at us.
Ofcourse I said, loud enough for them to hear, that we would leave when they hadn't come to fetch us in 5 minutes.
I don't like to be the subject of the waiting games we played when I was in training at the hospital.
Haha, within a minute we were invited to follow someone.

We got a nice welcome and nearly cold, watery, coffee and an introduction that made me stop them talking.

We were there to hear what they had to offer, not to make blind plans for whatever they wanted us to do.

So we started to have a real conversation about that our son can go to daycare/worktraining, what kind of daycare/worktraining they have, which other possibilities, etc etc.

They took my son to see the space where their daycare/worktraining is, and then turned to us.
We knew that autism is genetic. So where did it come from.

It was the first time the father of the children was so clearly confronted with his autism, and ... that he admitted it.
Well, he couldn't have denied it after what happened this morning. LOL!

After that I got the compliments that sounded meaningless: I was so strong, it must be difficult with 4 kids, and ofcourse I would be an expert by now.
One way or another it sounded hollow.

"Yes, that's why I've changed in contact with people who know it all.
I've learned not to trust the nice booklets, but let people talk about their work.
And I've grown quite spontaneous in saying what pops up, because most let the message go in one ear and let it leave through the other.
I've learned to look at the needs of the family as a whole, at the needs of the individuals, and I've learned to consider the workload others impose on the family when they want to "help". Professionally or not professionally."

Ofcourse then I switched the theme to the fact that traveling to and fro is quite a job. When our son goes there for one morning traveling time is about twice the length of his stay there.
So they can arrange he can go by special transport.

When my son came back he was quite impressed by what they have to offer.
He even said he would go there.
Yea...
He'll say anything to please others and when he needs to go he won't.
I could see it in his eyes.

So I said that we have barely started daycare in our own town, and he's having difficulties to attend there. He should overcome the obstacles here first before going another, more difficult, route.

So we agreed to keep them updated, and in case it didn't work out here in town we would consider letting him go there.

I expected them to adress the issue about his real problems: needing someone to brainwash him to go somewhere, whether it's a shoeshop to buy new shoes, school, or daycare.
It was clearly written in the referral...
But no word about that.

During the years I've felt a growing opposition against people making me responsible for him not going anywhere.
When he was young I just put him in the bicycle seat and drove away, when he was older it took a growing length of time to motivate him, and now I'm bluntly manipulating him. But nothing works more often than a single time, nothing is generalized, and each day I've fought the same battle.
He's 17, so ask someone else to lend a hand when you want to count the years I struggled on your fingers.

The bare facts are that they just call therapy, what they call here in town: support.

We didn't talk about admitting him, or about more intensive therapy.

So the choice was clear: first give him the opportunity here in town.

Then we had a few words about us wanting him to stay at the activity centre in the weekends. Autistic young people can stay there for a weekend in one or two months to give the family the chance to do something without autism interfering.
Oh... how I long to go shopping with the girls and do girly things without us coming home and falling into the bitter pit of his complaints and the accounts of his rows with his father. (That's why I almost always stay at home.)

It was clear he doesn't want to go... but we want him to go.
It's 5 minutes from here.
Well, they explained all the paperwork, the waitinglist.
I guess we'll get things arranged when I'm already dead and burried. With the gravestone in place and all.

We agreed to keep them updated in case he wants to go to their daycare.

Going home took as much time as going there.
Instead of getting lost we had to wait 45 minutes at the station nearby.
I took some acorns from the tall, old trees, to plant in my own garden.
One of the boys wants to make bonsai trees.

Looking back at what we gained today...
the acorns. LOL!

And he has a file at a centre where they can admit him when we can't take care of him anymore.
But when he's 18 he can be admitted at the psychiatric centre in our town too.

My idea about the autism centre?
Lots of nice brochures, but all drops or stays with the individual expertise and commitment of the individual people.
I'm sure they have a lot of knowledge on paper, research data and the lot.
But not one of the day to day problems we experience with him were addressed properly.

Tomorrow we'll have a meeting with his psychiatrist.
Hmmm







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1 comment:

  1. Hi Laane, I am happy to be back here in your blog and read your interesting post. :)

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