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.
Ofcourse parents inform the school about the autism of their child.
It's the only way to realise the best support possible for their own child.
But it's a pity that in some school relevant information disappears in the files, which are often burried in a dark corner behind a closed door.
During meetings teachers are told about the child and the treatment plan/IEP, but my experience is that most teachers are willing to stick to the all the individual steps of the plans, but they tend to forget most of them during their busy days.
Some teachers even forget the child needs special care in- and outside the classroom, is my experience.
Ofcourse you can call for a new meeting with all people involved, but it costs a lot of time and some people don't like that at all.
So I began writing a leaflet for the teachers, mentioning the fact that autism is a neuro-biological disease.
After that I mentioned the special characteristics of my son, not forgetting that he has trouble reading faces, often forgets that he's put his homework in his bag and overlooks it, and that he needs a silent classroom to be able to take in relevant information.
The leaflet closes with advice to prevent problems,
like writing homework on the blackboard,
enabling him to leave the classroom first so he can walk alone to the next classroom without the crowds pushing him aside, etc etc.
At the back there was always a list of phonenumbers of people who were good in dealing with him, like his favorite teacher, the pedagogue and his brother in another group, and I'd put my email at a visible place so I could be reached for questions at all times.
Every year at the beginning of the schoolyear and after christmas all the teachers got a leaflet, and my son had one glued in his agenda.
No teacher was able to look me in the eyes and tell me he didn't know after that.
Worked well!
Dealing with autistic children changes parents and teachers.
They have to change, because it's important to take the abilities and disabilities of the autistic child into consideration.
One of the things I've learned as a parent is to examine my motives before I want my autistic children to do what I want.
What do I want to achieve?
Is it useful?
Useful for what or whom?
How do I want to achieve it?
Are there easier ways to achieve it?
Does my autistic child understand what I want?
Does he see the use of it?
etc etc.
I've learned patience, self reflection, understanding, and examining my own motives as well as those of others. And it taught me a lot about my child and autism.
Each child can be seen as a burden or as a rich source of change and inspiration.
I was shocked when I heard how some teachers were dealing with my children.
My children have been ignored, shouted at, humiliated, slapped and bullied by teachers.
I've never stopped telling them that teaching is not about pouring knowledge in and over a child, or using the child for owns own ego.
Like Maria Montessori said: the child should be the beginning, the child needs to develop itself and we are here to create the right circumstances and environment.
You don't belief that teachers are sometimes loosing it?
Here's an example:
The boy is a non-speaking autistic boy at Pittsburgh Public School.
The woman is his teacher.
The recording is made by the teacher's aid.
You can give your reaction, or your help here.
Some organisations, we parents of autistic children need, come to a standstill during the vacation.
Ofcourse no one can take over important work, as all those people are so very important.
So our letters, applications and other written materials pile up and up, until there's a layback of weeks or even months.
When I saw the deadline nearing of the response to the application for daycare for my autistic son I got the strange feeling that nothing would happen at all.
More than 2 months had passed after I threw the letter in the mail, and more than 4 after the decision was reached we would apply for daycare.
We all thought that he would go there at the beginning of the vacation, for two days a week.
Giving us 2 days of free breathing and maybe even time to take the other children on a few daytrips.
But all we got was a confirmation that the letter had been received and that the deadline was 40 workingdays later.
Now 36 days had past and I had such an intense urge to send them a reminder, that I looked up the email and wrote a nice mail.
The same day I got an answer.
They needed a special identification number and a letter from the council, stating they agree with him not going to school anymore.
The letter finished with the promis that we would get the permission for daycare as soon as the councilletter would be on their desk.
So we've been waiting for two whole months for something that could have been organised within an hour before the summervacation started.
Now we have to wait until the people at the council start working again.
Oh.... this makes me so mad!!
I wonder how long we would have been waiting when I hadn't send the reminder!
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.
July 9 I'll land well before breakfast in London.
Of course I can do with a welcoming committee. LOL!
The return journey isn't booked yet and depends partly on when I'm able to see some of my English friends, how much I have to spend, if we 2 (son of 23 and I) can find an affordable place to stay after the weekend and on how many speaking opportunities are offered.
You can contact me to speak about autism through the contact button at the top of the blog.
Because I've also had quite a lot of success with round table meetings and meetings where I answer questions people have about autism, I also want to offer my presence there.
Round table meetings can either be used to exchange experiences between parents, for instance, or to discuss matters about one person or case with all the people involved in the care for the person: doctors, school, parents.
Because I have 4 autistic children between the age of 16 and 23, and 2 non-autistic children, and their father is autistic too, I have a wide array of experiences to share.
I'm a psychologist, discovered autism in all my children long before their first birthday and even before their vaccinations.
I'm OK with all subjects. And I'm quite willing to travel outside London. (That's why we didn't book a place to stay after the weekend.)
So contact me and we'll work things out.
Michael Buckholtz has been on hunger strike for 30 days to raise funds for his non-profit organisation and to raise awareness.
I've blogged about him before on this site.
At this place I want to thank all bloggers who took displayed the graphics on their site or EC-bought the awareness graphic on their widget.
I also want to thank my fellow twitterers and tweeties, who tried to spread the message.
Getting the media interested in a genuine human being is far more difficult nowadays than it was about ten years ago.
But his message is strung, his humor is powerful, so I won't be amazed that he'll find his way into the hearts of many people.
The local paper of Macon publicized an article about Michael and made a video which you'll find at the right top of their page.
Thank you Michael for all you do for people with autism and for autism families who are struggling with the financial burden of autism.
Let's keep on spreading the word!!!
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