With permission of Gomey's sister:
To my favorite dearest sister,
It has been 2 weeks since I've talked to you or seen you.
I wasn't able to warn you a head of time that I would be stolen out of my home.
I was numb the whole way to the hospital.
I didn't know what to think.
My fear is consuming me.
I told mom, that I have to share with you what happened to me.
Because we are so close.
We share so many wonderful moments together.
And I'm looking for comfort from you, in these darkest days of my life.
I know in my heart, that you suffer every minute knowing I am here.
Where I am, is the worst place to be.
I can not sleep at night, from all the screams, yells and the laughing of the nurses late at night.
With out any consideration for the people that are here.
After all we are in the "coco nest"
There is one educator amongst others, that treats me me very abruptly
Nothing I am doing is good enough for him. His name is Eugene and he doesn't seem to like me very much, and it is making my life here very difficult. And yesterday the educator by the name of Pierre, disturbed me by trying to touch my belly button. You know how much I don't like to be touched by strangers, and especially in stressful situation like this one. There is also an educator that comes in the evening, his name is Marcelle, I hope he will be here all day every day. Because he's really nice to me.
For the last 10 days, no body came to see or talk to me, from the medical staff, in regards to the court order for an evaluation. Why did they ask for 21 days if they are not doing anything?
It feels to me that I'm being held as a hostage for their next plan (they probably need some
time for preparation)
I'm extremely sad, confused and upset, that I can not get a definite answer from mom, of when I'll be free.
In the last 13 days, I haven't been outside, not even once, Nofar.
I'm pacing the hospital halls hours upon hours to pass the time,
But the time doesn't pass, Nofar.
I told mom a few times, that I'm disturbed by the food choices.
They don't give me another choice, but Milk as beverage, beef, or pork.
I explained that the medical tests show that I have senstivity to these products, and I'm not able
to consume them.
I offered that I would eat a sandwich with Jam, instead of meat, but they refused.
I also asked them for Bread with Jam for a snack, and they also refused.
Since I came here there hasn't been one day with out severe stomach pain and other pain in various areas of my body, but they ignored my situation.
Chantal (from the case management) promised my mom that I can go every day with supervision to play basketball, in 13 days I've only gone once for a half an hour.
Why don't they take me outside, nofar?
There is no computer and no other way to contact you,
And I know and feel that you have to know what's going on with me,
and I asked mom, to let you know, about my condition and what I'm going through.
So you can talk with the ombudsman and let them know, some of the details.
I would like you, Nofar, to be my voice and speak on my behalf.
Because they took my rights away and with that my voice.
I'm completely isolated with out any human contact.
Nofar, How long will it take until I can hug you and mom again?
I decided to write you because I knew that you would do everything and anything to help me.
I love you and miss you and I hope that soon we can do all the fun stuff that we do, together.
Gomey
Showing posts with label daily life. Show all posts
Showing posts with label daily life. Show all posts
Our conversation in the national autism centre is, as planned, interrupted by a young woman who takes our son on a tour at the location.
The calm conversation changes when the oldest lady moves, with an unexpected short bust of energy, her body towards us.
With a sense of amazement I see her face changing and hear her voice getting sharper.
It's the father she targets after a fast look at me.
"We know autisme is genetic. Do you have any idea where it comes from?"
It's more a frontal attack than asking questions to complete a family profile or stating a fact.
The lack of accent on "we" creates the idea that the question is often used the same way.
"You" in my language has a polite form and it's used without the normal emphasis, downgrading it to neutral, bland, word and at the same time taking away any personal meaning.
But we're in the national autism centre, zo I assume they know how to relate to other people.
Without taking a breath before speaking, with visible amazement, the father mentions his brother and, after a short look at her face, himself.
The acknowledgement is almost tactible.
Clearly uneasy he ads: "That's why my wife has to take care of almost everything in our family."
A fast look at me should be the signal to the woman to stop interrogating him.
The bright rays of sun are unable to break the crisp uncomfortable feel in the room.
Just at the moment I think that it's time to take over the lead of the conversation the woman resumes: "It won't be easy with autistic sons".
Almost grateful for moving away from his achnowledgement he hastely ads: "No. It takes time to accept that, because every father wants his son to be normal."
It sounds like a closing sentence and is accepted as such.
The lady once more invests energy in a posture change, this time towards me.
Without changing anything in her facial expression she utters a sentence that should have sounded very understanding. "It's a difficult family. A heavy task for you."
It sounds like a far too many times repeated part of a bad theatre play and the complete lack of empathy, intended or not intended, stays with us when we go home.
There's more empathy in a written comment to a blogpost than at that moment in that small room in what should be the centre of autism knowledge and treatment.
Professionalism as a theatre piece, it seems.
The autumnleaves are waiting on the pavement for our feet to make them swirl through the sky.
The sharp wind is not stinging anymore, but feels fresh and authentic.
I've been asked to write about autism and work.
Maybe this should be a series of posts to go through the whole process of preparing for employment, finding a job, getting it and keeping it.
ASD in this post means: autism spectrum disorder.
Young people who want to prepare themselves for the future, or who want to earn money looking no further than the first pay check and the things they'll buy, just apply for a vacationjob at a supermarket or another place where they have simple jobs available for young people.
They learn from trial and error, listen well to the instructions and ask others when it's not clear what's expected from them.
People with ASD often won't be accepted when they apply for a vacationjob, or they are not ready even to want one.
Because they lack peer contact they won't hear from others about vacancies.
So, with the same age, they lack job experience, which put them often behind their peers.
The present knowledge about ASD provides enough to develop a way to guide people with ASD to a job that fits their abilities, and is challenging enough without discouraging the person.
Here we use a special system to enable people with ASD to get and keep a job.
step 1. Know yourself
Most important is to write down and learn about the good and less good characteristics of the person, regardless of a job.
This will provide a lot of insight in skills that are present and those which need to be learned.
Many people with ASD have troubles planning, keeping a good day and night rhythm, being somewhere in time, estimating time needed for a task, formulating questions, etc etc.
step 1a: improve yourself
Based upon this list of good characteristics and skills and weaknesses, a learning program can be made. Taking about 3 items at a time, during about 3 months.
Most of these tasks can be practiced as part of a normal day program with school, or daily activities.
step 2: Finding out what you want to do.
When it's known what kind of job the young person is interested in, information can be gathered. Realistic ideas about the job requirements can be created,
These requirements can be listed beside the good/weaknesses analysis, showing areas where further education is needed.
Step 2a: train yourself
Many people with ASD need to consciously learn appropriate behaviour as individual elements, need to synthesize them into a chain of behaviours, and they need special training to generalize learned behaviour to other settings.
For some jobs special practice settings are created at a school or as a daycare facility.
Take for instance administration, duties at a reception, and keeping track of stock in a shop.
This can be practiced in a kind of office at school.
Working at a restaurant can be practiced in a real restaurant setting where visitors know they're visiting a restaurant where young people are taught at the job.
Often this requires one tutor to one or two young people.
The tasks, set out in step two are taken into the program at the practice setting.
A boy who always arrives late will be trained to be in time both at home and at work.
To be continued.
New research shows people with autism have more language problems than only taking things litteral.
Cathelijne Tesink, from the depertment of Psychiatry of the Nijmegen University UMC St Radboud and the Donders Institute for Brain, Cognition and Behaviour.
She knew that people with autism experience problems with complex language, and often can't understand jokes, for instance.
She wanted to know whether the language problems are only limited to complex language or whether basal, implicit language poses problems too.
Because spoken language is embedded in the information the speaker and his voice tranfers, distorted perception of the speaker might interfere with understanding of what's said.
She offered people with and without autism sentences which belonged or didn't belong to the voice who was saying them.
Like a child saying that he always drinks a good glass of wine before going to bed, and a grown up saying the same.
Both groups (those with autism and those without) were aware that something strange happened.
In both groups the brainscans registered activity in the language center of the left hemisphere.
But... in autistic people the same area in the right hemisphere was activated too.
Like their brains needed to compensate something to arrive at the correct interpretation.
This finding is in line with the earlier findings that people with autism take language literally and that they have difficulty interpreting the context of language.
(And it also is in line with my observation that many autistic people need more time to process language and children need more explanation to understand language.)
The brainscans showed another difference.
When processing the correct sentences people without autism activated a brain area that is involved with self reference.
This area is active in the evaluation of oneself and others.
This area was not activated in people with autism.
This is the first time scientific research shows that people with autism use compensating neurological mechanisms even for normal daily language.
Even the most basic levels of language understanding are involved.
This is a huge step forward to a new way of diagnosing autism.
Research was published in: Brain
He's angry.
Because he wants to learn to cook, and I welcome the idea of boys being able to make something for themselves, he helped me making dinner the past three days.
One day he got me a package of spinach from the freezer.
Nothing special for normal kids of 16, but when you're autistic it's quite something to open a door and put your hand between all sorts of slippery and icy things.
He hates it, but because getting all the ingredients belongs to cooking, he took the package out.
The next day he boiled water and put the spaghetti in it and kept a close watch on the clock.
It nearly smashed my nerves.
Being updated of the time every 3 to 5 seconds during 11 minutes by someone with a loud voice doesn't feel good.
But we both managed...
And yesterday he boiled the eggs.
I thought 4 minutes of time-updates were enough. LOL!
This morning he was still proud of his accomplishments and told us over and over again we would have starved without him.
Which is ofcourse quite an understatement
The girls told him they liked his help, his father told him he should also cook dinner today.
It was meant as a compliment,
but it turned out a complete chaos, because son felt that people in the house were using his talents for their own good (wow!), etc etc.
He doesn't have meltdowns very often anymore.
But today he did.
And because he quit his meds a few weeks ago, there was nothing that helped him to be in control of his emotions.
After saying all sorts of painful things to those who are at home, and yelling a lot, he's now complaining his computer doesn't work anymore.
I'm not ready to have a look.
And I'm certainly not ready to have his father have a go at him because he broke his computer.
Last time he pulled a plug out and I was the one to "diagnose the problem", because the help of 4 males didn't do any good but stir emotions even higher.
Oh, and by the way, I'm the one to cook tonight. No eggs, no spaghetti and spinach. But potatoes, red cabbage and sausages. Because I like it!
update:
Nothing wrong with his computer, the rolling shelf the keyboars stand on got stuck because a screw was a bit loose.
Siblings of autistic children lead a different life than many other young people.
The care for their brother or sister is a central in the family.
That doesn't mean it's negative. Not at all.
Have a look at this video.
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