Thursday, April 16, 2009

Being tired from autism

april 16 2009

Making appointments is such a pain!

Had one today with my autistic boy to meet his social worker for the first time.
I saw it coming when he didn't want to shave his beard yesterday: he's ill today.
He sounds ill, but I've learned that part of it is his autism speaking.

I skipped Tai Chi this morning (again, yes), to be able to have a relaxed morning before leaving.
We could have prepared quietly.

Instead I asked his social worker whether she wanted to change to appointment or wanted to speak me alone.
She wanted to change it.

Well, I could have done with a listening ear. But, hej, it's not about me.


Tomorrow I'm having an appointment with someone else about him going to a kind of daycare where he can learn simple skills.
It's a protected environment, as they call it.
Let's see if they're willing to take him...

Because my son has been to school the council representative thinks he should go to school again. I wish she listened to us, instead of playing the same record over and over again without taking the wellbeing of my son as her concern.
When he's placed in a situation that frightens him, he withdraws. I can't keep spending all my energy anymore each day to make him go to a place he's unhappy and afraid off. What does she want? That I do all his homework? That I put him full of sedatives to make him go to school?
Why won't she understand what it takes to make him feel OK again when he comes home?
Why doesn't she understand how much it takes to motivate him to go to school? Each day over and over again?
I'm feeling despair here. Fighting the same wall over and over again.

He needs a place where he feels safe, and where he can enjoy what he does. Maybe he'll take on more and he'll develop further there.

-

As I wrote last week, the new school for my second son is not the success we hoped for.
The school's OK, but his mentor is one with an ego. She thinks she knows everything about autism, and she doesn't even wants to accept the basics.
We asked her to step back and have someone else mentor him; twice.
But all we managed to do is have her agree to a meeting with a psychologist, my sons social worker and us.
Problem is they're all parttimers and the meeting will be held somewhere in may!! We still don't have a date.

This is not in the best interest of my son.

I've asked to lay the matter on the table of her teamleader. Wonder whether she does. Don't think so.

After 20 years dealing with schools this way, I'm so tired of it all.

I've met some good people along the way, but they were individuals. A breath of fresh air.
For the rest it was fighting for understanding.
So many people have told me they knew what autism is, but what it means for my kids... they didn't understand at all.

I don't think I'll manage to celebrate my 25th anniversary "autism and school".
There are plenty of years with that theme left, unless they let go of wanting to force my autistic kid to school. (I hope they do.) But I don't want to fight against stupidity much longer. I'm too tired, and my health is deteriorating.

When they grew up I used all my skills and knowledge as a psychologist to help my kids develop themselves.
I hardly had some time for myself.

They are all able to look people in the eyes, make some smalltalk, cook, and express themselves to a certain extend. To give some examples.
But because they know how to behave themselves, people think they can live up to all the other expectations of society too.

I want to climb on a roof and yell: THEY CAN'T!!

They can't adjust to society further, otherwise I would have managed to teach that to them, one way or another.

Maybe it's time again to make a leaflet for each one of the kids, to state what they're able to and what the limitations are. (I did so in the past to inform new teachers.)
A kind of final statement, for people to take or not to take.

I don't want to be told I'm the one to blame, because I gave all I had.
Never had any proper help, just a few meds for the kids, and loads of appointments with people. Except for one or two, they didn't make a difference in the end.

I need a break, and I need to use my talents far better than I do now.

Hell, I should speak for large audiences about the many forms autism presents itself.
How one can run a family with 4 or less autistic kids, and normal kids as well.
I should answer all sorts of questions people have.

I should final have some proper acknowledgement!


===


Someone asked last week how I keep on going.
Well, maybe this post made that clear.
I can be depressed, tired and everything else, but life goes on.
The world doesn't stop turning because I'm burned out, or because I want my family to disappear in the clouds for a couple of days.

I don't have the money to go shopping, to put a family caretaker in the house to have a break myself. No skying, no sunbathing either.
I just have to tell myself things need to be done to improve things for others and that maybe I'm the one who should do that.
I can't believe I'm here in this life to be buried between 4 walls, in a family all my life, between the dust, the laundry and all the problems people create.

When I was able to blog a bit for money I would buy myself a nice pendant on ebay. Or some earrings, or something like that.
Now I just have to deal with the present, and leave the future alone whenever possible.

A bit of music, a bit of staying in touch with the person I really am and could have become.

It's like walking the the desert.
You can either blame the sun for burning on you, or thank it for the light.
At least I can see the poisonous insects in the light.




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