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Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

the night of the 13th

may 13 2008

I should have looked at the date when I went to bed.

When I was pushed straight up at 4.19 hours, I should have done it too.
The sound which made me freeze into a sitting position in my bed was from my son.

He was yelling against his computer.

The windows were all open, so the whole world must have come to a halt.

He couldn't sleep, he told me, and his computer didn't work. And the whole world is a mess.

I couldn't agree more with the last statement, but I doubt if he cared.

I closed the window of his room and turned.
He stared me straight in the face and then started his litany of all his complaints.
Included were the weather (twice), the other children, his computer, school, the government and a lot more.

So I told him to go to sleep, now it all was out.

No, he wasn't going to sleep, because he couldn't sleep at all.
The book I first suggested was stupid, the other was intentionally too girly.
Well, OK, then he would take the first one.

By that time I was angry on the whole world myself.

Why didn't I have children that are normal and are sleeping in no time when something woke them up during the night.

A big spider was using my bathroomwall to have a walk...NO WAY!!

By the time I was sure he was dead I was so wide awake that I didn't fall asleep anymore.

And my son?

He was sleeping with a book by his side like a sweet teddybear.





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I was called by a former collegue

may 9 2008

Isn't interesting that at times the same subjects pop-up over and over again?

First I was called by a former collegue.
We used to work at a hospital, but that's half a lifetime ago.

It was nice to hear his voice.
Turned out a mutal friend mentioned a while ago that I'd adviced to refer one of his clients to a drug rehab in Malibu.
So he wanted to know which one.

We talked a bit about our children and plans to have a reunion, then it was time for him to leave for an appointment.

A few minutes later a mother called about her autistic son.
The psychiatrist finally decided to stop with Risperdal.
She was worried, because her son was having strange eye movements.

Risperdal isn't addictive, but one can say that the brain gets used to it and needs slow withdrawel to prevent withdrawel effects.
4 says (!!!) was clearly not slow enough for her son.

I was able to refer her to the clinic at the emergence hour, so her son could be checked.

I'm sure the subject of alcohol and drugwithdrawal will turn up the next days too.


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The files arrived, grrrr.....

may 6 2008

We asked the council to send us the files they have about my autistic son.

They arrived today.

I haven't read more than the first page.
It's a healthy decision, because my bloodpressure and everything else went over the roof.

In the past, when he was at basic school, we went to the council to talk about the fact that we expected problems at school.
We didn't know what school was able to care for his needs.

Basic school had been a very bad experience.
I was called to school for an emergency at least twice a month. Meaning they called me twice a week.

The schoolyear was a complete horrormovie, with a principal who thought he could calm children with laying his hands on their shoulders and looking them deep in the eyes.
Ha. Do that with autistic children and you'll get a panick attack.

They guy interpreted that as agression...

Well, the representative of the council called him after she had spoken with us, and he told her that we painted a picture that wasn't right.

I can understand he wanted to protect himself and the name of the school, but that he would go as far as that!

So now we understood why we were treated so bad at the meetings of last week and the week before.
They just don't believe us.

Those schools protect themselves and they don't care for the individual pupil.


I have written a reaction to this file, but I'm not sure if I should bother to send it.
On the other hand...it's a legal document and it can be used against us might it come to a courtcase.

Any input will be welcomed!


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Help me score for autism

april 30 2008

This month was autism awareness month.

The earnings of this month will go to a good cause: autism.

The blogentry that scores the most at buzzfuse will win $500

I would love to have the winning entry this month, because so much good can be done.

Please rate my topentries of this month today, so I'll be able to donate the money to this marvellous cause.

Trust me, I won't get you into something you can't get out. I would never do that.
Registering at Buzzfuse is free. (I won't win anything).
Then your rating will be noticed and counted.
It's possible to use the widget at your blog, in case you want to.
The benefits are clear: gain a larger audience.
I also like the fact that there's no need to send emails out to friends and fans.. It's all automatic.
Each entry will be followed by a mail to your list.

Following are my best scoring entries, the best one at the top.
Click the link and rate at the widget.

Please, please help me gain for autism.

Thanks!!!


workshop: Going to the Heart of Autism

memory

friday's feast



exhibition at school

autism - school - and an invitation of the law


I'm collecting magnifiers now




autism in libraries

inspection of the waterplayground

a cure for autism

saturday 9




three word wednesday - coma

manic monday

heads or tails - gardeningtip

publicising research results

autism awareness and a smile

The oldest and education



I feel caught in the middle between the law and my child.

Scrumptious Sunday - soup



Scrumptious Sunday - Chili

saturday special



Scrumptious Sunday - potatoes










looking for dad serving in the RAF during WW2

the same psychiatrist, oh my dear!

april 29 2008

Talking to other parents with an autistic child is very worthwhile.
With 4 boys with Autism Spectrum Disorder I'm always able to recognise something in the stories of others.

Now I'm being more active in my town people start asking questions or spontaneously start to share their experiences.
Sometimes I know I can help.

Last week I met a woman who told about her autistic son and the psychiatrist they were having troubles with.
I recognised her story and asked carefully if she wanted to tell me the name.
Yep, like I thought, she was complaining about the same person.

Because she had some questions that couldn't be answered at the schoolgate, I was invited over to her home.

I expected to be away from home for a bit over an hour, but I should have taken my pyamas with me.

Her son showed the same behaviour as my autistic son, had exactly the same problems with medication, etc etc.
And, like the psychiatrist reacted to our difficulties, she listened while looking at het watch with intervals of 10 seconds, mumbled about institionalisation and precribed the same meds before opening the door and smiling.

I've sworn to myself that I would jump in whenever I heard the same story about this psychiatrist as ours, and so I did.

When I asked her if she wanted to have her child in an institution, she said she was afraid it would end that way.
Her son even told the psychiatrist the last time that he thought she didn't care about him at all and that he had the idea she wanted to put him in a nuthouse.

That is not what autistic children should deal with!!

So we made a plan to get him better help,
I told her where to go for special assistance at school and how things are organised around the paperwork, and I was strengthened in my feeling that more moms in our town should meet and talk together.

So I'm going to organise a meeting soon.






More entries in autism awareness month:


articles:


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I feel caught in the middle between the law and my child.

april 23 2008

Tomorrow we're going to have a meeting with a representative of the council.
She wants to "hear" is (like in "interrogation") about the fact that my autistic son is not going to school.

He promised to go last monday, but ofcourse he didn't.
The school offered him an emtpy room, and that was it.
No-one waiting for him, telling him what to do.

I'm not even sure someone realised he wasn't there at all.

Well, I've begged him to go, threatened him, gave him a book to read there, etc etc.
I can't pull him on his hair to school.

After the school with the auti-classes didn't admit him against all promisses and after 4 months of waiting, school is a no-go to him.

He can't deal with the social situations, the lack of routine, the different facial expressions, the noises, etc etc.

Homeschooling isn't allowed here.
All children should go to school.
But there's a lack of auticlasses.

I feel caught in the middle between the law and my child.

Tomorrow someone who doesn't know my child will decide if we get a fine or if we're brought to court.

Ofcourse we've made a plan.
First we want to know if the files she has are complete and if she knows he has autism.
The man she took over from intimidated me in my own home. Not much later I found out he didn't even know he was talking about a child with classic autism!

Second: it should be clear that the school did nothing at all to help him.
So they should fine the school, not us.
We complained and did everything else to get the school in motion, so they would provide him what he needs.

Third: the system falls short. He would have gone to school when the auti-class application was granted.
But there aren't enough auticlasses.

Fourth: other help is involved. I have asked the schooladvisor to help us out, and I've even asked for a meeting with the council...and that's granted!

When she fines us or sends us to court, I'll involve the media.

The last days I've felt sad, depressed, angry and a lot more.

Now I'm just very tired, but I hope tomorrow morning I'm ready to make clear that I've done all I could.

Keep your fingers crossed for me, pleasssseee!



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autism in libraries

april 19 2008


Have you ever considered looking through the autism-books at your library?

At the beginning of spring many libraries have a spring cleaning and -filling.

That means that books that are never read and/or are considered old are sold for a low price, and new books are registered and put on the shelves.

The library where I live take suggestions from members, so each year I order a few books.
In the beginning they were hesitant to do so, because they thought it would only cost mony and the books would never been read.
So I urged friends and teachers to ask for the books.

Now I'm asked each year if I have suggestions.

Sure I have!! LOL!

This year I asked him to display a couple of books and information about autism on the special table near the entrance.

Because it's autism awareness month they did.


Maybe you want to take the same action.
It's very worthwhile.




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This month all my earning
will go to support of autistic children and their parents.
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workshop: Going to the Heart of Autism

april 19 2008

East Lansing, MI
Going to the Heart of Autism (workshop)
June 13-14, 2008 (9:00 am to 4:30 pm)
Instructor: Dr. Steven Gutstein
for: teachers, parents, and everyone else.


Dr. Steven Gutstein, a psychologist, created the RDI (Relationship Development Intervention) program.
He reviewed the scientific literature about autism and he defined 6 core deficits each autistic person shows. These deficits show no improvement with age.


  1. Emotional Referencing.
    That is the ability to learn from the exsperiences of others.
  2. Social Coordination.
    That is the ability to control one's behaviour in such a way that one can engage in spontaneous relationships.
  3. Declarative Language.
    That is the ability to use verbal and non-verbal language to express emotions, share them and coordinate actions with others.
  4. Flexible thinking.
    The ability to adapt to changing circumstances by changing plans, opinions, etc.
  5. Relational Information Processing.
    The ability to extract meaning from a larger context. Like solving problems that have no clearcut solution.
  6. Foresight and Hindsight.
    The ability to use past experiences in a creative way to anticipate on (slightly different) future situations.
All these core deficits have one thing in common: the lack of use of creative/dynamic intelligence.

Most people with autism are very able to use static intelligence. They're good in memorising facts.
But they lack flexibility and the creativity to respond properly to new situations.

RDI makes people more aware of the natural pathways.
It enables people to put normal processes into words and slow them down.
By creating simple settings and well defined behaviourtargets, one creates more succes-experiences and enables to get insight in what a child needs to develop further.

The program uses parents as a means to teach the child.

In the workshop the following areas will be duscussed.

*-Research results on the quality of life for people on the autism spectrum

*-The developmental path unique to people on the spectrum: including the concepts of absolute vs. relative thinking, imperative vs. declarative communications, and more...

*-The basic principles of RDI: Guiding and Pacing, creating an Experience-Sharing communication environment, capturing episodic memories, teaching Functions before Skills, determining developmental readiness, and developing competence

*-The essential elements of a RDI lifestyle

*-Video clips of 'RDI in action' with parents and children and clips from the first two years in the life of a child with autism

*-The importance of frameworks and of the concepts of evolving and modifying frameworks

*-The advantages and the processes of forming dyads and small groups

*-Research on the effectiveness of RDI

*-RDI with teenagers

*-RDI implementation in school settings

I have a problem with the theory of Mr. Gutstein.
He overlooks the fact that autistic children are able to share feelings and emotions.
And not all autistic people have a complete deficit on the 6 areas.

He surpasses this problem in RDI, because it's a highly individualised program.

I like RDI because it's a positive approach.
It makes people aware of the potentials a child has.

Many parents realise that RDI is a more explicit approach of what they do already.

Teaching a child to tie the laces of the shoes works best when the complete action is broken down in parts.
An autistic child not only needs to learn the individual actions.
It also had to learn to synthesise these individual parts, an autistic child also needs to learn that he can tie his laces at school, on the pavement, and can also tie the laces when they are wet.

I think it's a relief for parents to experience the success of the individual steps.
Dealing with an autistic child without having attention for the details is a very distressing experience.



For more information:

http://www.rdiconnect.com/workshops/viewAssessment.asp?wid=145
Brad Andreessen
Email: bandreessen@rdiconnect.com
Phone: (713) 838.1362 x130




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    reminder

    april 19 2008

    Lansing
    Capitol Steps
    11.00 AM - 2.00 PM

    Rally to motivate politicians to pass autism insurance legislation in Michigan.

    I've seen at:
    http://autisminsurancemi.blogspot.com
    that there are a lot of interesting speakers who support this event.

    More information:
    http://autisminsurancemi.blogspot.com
    and:
    http://michiganaction.org (there's a forum)



    Buzzfuse rewards toprated posts.
    April is autism awareness month.
    This month all my earning
    will go to support of autistic children and their parents.
    So help me win a buzzfuse reward
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    autism awareness and a smile

    april 15 2008

    I haven't been blogging a lot this last week.

    I had too much on my mind, with the application for a school rejected for one of the girls. And some other issues.

    On top of it: I was far less motivated as it looks that people don't care for the buzzfuse element I use and the cause I blog for this month.

    So I turned my energy another way and created two dutch blogs.
    (I'm using the name Holly, to give my children the privacy they deserve. So be careful when you comment.)

    One to improve the situation for autistic children in my hometown.

    And one: "Action for Autism", to enhance awareness, comment on all sorts of situations that aren't right, vent ideas all over the place, motivate other people to take action, etc etc.
    There are two other Action for Autism sites, one in England and one in India.
    Wouldn't it be great to connect international and national initiatives?

    The number of people with an autism spectrum disorder is growing.

    I'm not at all sure we're dealing with disorders here. Not in all cases.
    Many of these people have strong and weak characteristics, like us all.

    Their weakness is defined in the areas of communication and socialisation.
    They have a different way of perceiving and processing information, so they have difficulty dealing with the way information is handled at schools.
    But a growing number mean we are getting more children with a disorder, or does it mean it's time we change the way our society works and the way schools are aimed at the average student.

    Maybe we should even start to reconsider our way of thinking about other human beings.

    I've found many people tell me autistic people are not contributing to society.
    Hmm...
    They sure have made me feel more accepting about people who want to be or are unique(including myself).
    Do we give people who are different enough opportunities to be themselves?

    Does a higher level of education really mean that the person is better, more contributing, more valuable?

    I was at the school of the girls yesterday.
    All the pupils crowded the halls and classrooms.
    Some were talking about the latest fashion, showing off their shoes.
    Others were talking about the traffic exam taking place this week, and some boasted about the school they were admitted at.

    Slowly it got more silent.
    Doors closed and the corridors were empty.

    Then a teacher stepped out of the classroom and shouted a name.
    "I'm coming", I heard.

    A boy walked my way.
    "I hope she didn't shout too hard for you.
    I'm autistic and I'm always late.
    People say I'm too slow for this world."

    He gave me a bright smile.
    "You're the mom of the twins, aren't you?
    Your boys are autistic too, so you know what people say."

    "Yea, I sure do.
    But I also know something else.
    You're doing the best you can.
    Last year you didn't dare to look at me, let alone speak with me.
    Boy, you have the brightest smile I've ever seen,
    and you've warmed my heart.

    No one did that today.
    No teacher, no child.

    You just cherish that gift of making people happy,
    and keep your smile ready for people who want to see it.

    Many people forget to smile.
    Tell you teacher and your mom you took the time to make someone happy with your smile."

    He went to the classroom and I went with him. Told his teacher we had a very important chat and that he wasn't late at all.
    He just took the time for something that was very important.

    I don't care what that teacher thought.
    But on my way home I was singing on my bycicle.




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    This month all my earning
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    Arrival of the papers for funds for special support at school

    april 10 2008

    After months of gathering the necessary statements, signatures, and forms, after waiting for weeks, we've received the official papers that state that my autistic son isn't able to participate at normal schools without special help.

    These papers are needed.
    Not only for the auti-classes that have no space for him, but also when he wants to attend a normal school.
    These papers are worth regular assistance and they grant me the supervision of treatment plans and also of all the agreements with people who have to support my son.

    To me it's gold!

    Now we have to find a school.

    Interesting is that the educationadvisor now told me it would be wise to ask special support for a teacher at home.
    He's forgetting that it takes another load of paperwork and almost the same procedure to get funds for a special teacher.
    By the time we'll receive those papers the year is over.

    Well... one of the hurdles is taken.... lots of others have to follow.





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    April is autism awareness month.
    This month all my earning
    will go to support of autistic children and their parents.
    So help me win a buzzfuse reward
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    Who diagnoses autism and how.

    april 6 2008

    A diagnosis of autism has a lot of implications for a child and its parents.

    Some people claim to be able to "see" if a child is autistic.

    Autism though can be easily mixed up with other developmental or communication problems, so an expert needs always to be involved.

    So it's not up to a schoolteacher, nor to the family physician to make the diagnosis.

    Because autism is a neurobiological disorder defined in the DSM, the Diagnostic and Statistical Manual of Mental Disorders, a psychiatrist is the expert one needs.
    Not all psychiatrists however are trained to deal with children, so one should look for a child and developmental psychiatrist. If possible one who is wellknown for accurate diagnoses of autism spectrum disorders.

    Some people think it's not very important that a well defined diagnosis is made for a young child.
    They say young children change a lot and maybe these children even outgrow their diagnosis.
    As I wrote before: autism is a disorder for life.

    A carefull diagnosis is important, because the treatment of a child depends on it, and which means that the development of the child depends on it.

    In some states children with PDD-NOS won't get proper treatment, because PDD-NOS is considered of less influence on the child's life than for instance classical autism.
    So even experts are inclined to diagnose a child with classical autism, to get help for the family.
    It's a disgrace that policy-makers don't know enough to make proper decisions about the help children should get. Or that they won't trust experts.


    I've had some questions from parents about the time the diagnosic process costs.

    Each diagnostic process should include:

    • an anamnesis, that's a family history. It's important to know which illnesses and disorders are in the family, because some might point in a certain direction, or might be overlooked at a young age.
    • the history of the child. Some disorders lead to the same symptoms as autism, but are not autism at all.
    • the experiences of the parents. Parents see their child develop from day to day. They know their child as no one else.
    • the observations of teachers and others. Sometimes familymembers or friends see things the parents are not able to see.
    • questionnaires. They're very helpfull to discuss each and every subject that's needed to pick up signals. People can remember active, but also by recognition. These list are great for that.
    • observation. Expert observation of the child is always important. It's up to the expert where he likes to see a child. Some are OK with a classroom, others prefer playtherapy or videos at the family home.

    Some experts also want a physical exam, bloodwork and even scans.
    That's because they want to excluse other issues before making a clear statement about autism.



    I'll write about the symptoms of autism at another time.



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    A cure for autism

    april 4 2008

    There are lots of misunderstandings about autism.

    One of them is that autism can be cured.

    Ofcourse I've read the sensational stories of parents who have been able to give their child a special therapy for quite some time and at the end they have cured the child.

    I'm always very happy for the parents and the child.
    There's nothing more fullfilling than being able to change a child into the image you want.
    And we all want perfect children with just that little added imperfection that makes life fun.

    As a psychologist and scientist I always want to know more.
    Was the child really autistic?
    Who diagnosed the child? How? When? Where? Needing how much time?
    Wo were involved in the diagnosis? What was their training and experience? Etc etc.
    What was the baseline of the child's development when the "therapy" started?
    How was the development defined? Which areas of development were involved?
    What's the description of the therapy, can anyone use it?
    Etc etc.

    Just claiming that a special approach helped a child might create the image of a miracle,
    but even a real miracle needs clear definition, description, measurements and evaluations by experts.

    Autistiform behaviour, that's behaviour that looks like it's autistic, can be the result of numerous conditions.
    For example:
    Children might engage in less social behaviour when they suffer certain forms of braintrauma.
    And children who are neglected seem to be unable to communicate and reach out. They become apathic and turn inside themselves.
    And some children with a fungusinfection in their throat stop talking and try to escape from social interaction so they won't be forced to talk and suffer pain.

    Most of these children will communicate better in time with proper attention and good care.

    But these children were not autistic.

    Autism is a neuro-biological developmental disorder.
    No cause has been identified yet.
    The last years some theories have been formulated, but researchers are still trying to find enough evidence to confirm these theories.

    When the causes can be formulated it will be easier to find therapies to influence the problems that are caused by autism.

    Many parents and therapists are trying different approaches to influence the behaviour of their children.
    But even when some children can be influenced in such a way that they behave almost normal, compared to other children of their age, they're not cured.

    It's like diabetes. One can influence glucose and insulin levels with diet, medication and spending energy, it doesn't cure the disease.

    Someone with autism will always perceive the world in a different way, because information is processed in a different way in the brain.

    All people with autism are different.
    That's why one can't say that when one approach works for one person it's also successfull for someone else.

    We can try to create an environment which triggers less problems for autistic children.
    We can use medication to make children less susceptible for triggers that cause problems, or which make children display less problembehaviour.
    We can use behavioral training and other therapies to condition children to behave the way we want them to behave.

    But there is no cure to take autism away.

    I remember telling a teacher that we can't take autism out of a child, but we can take autism out of our minds.
    By accepting the child is unique, and by assisting the child in all areas where support is needed, we can create the best conditions for development.

    In our society children are judged in so many ways.
    They need to be normal.

    Well, autistic children are special.

    Maybe we all should be cured from the idea that the average way of development, and that the standard way of behaviour is best.

    Autistic people are individuals.

    We all will be a lot happier when we start to accept this.






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    This month all my earning
    will go to support of autistic children and their parents.
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    Laane is a psychologist (1986) who's specialised in autism spectrum disorders.
    She fights for the rights of people with autism and autism spectrum disorder to recieve education which fits their needs in a social environment which is safe, supporting and nourishing.
    She's the founder of "Psychiatry - Individual - Education", an organisation which is aimed to improve the position of people with a psychiatric disorder in schools and other educational environments.

    4 of her 6 children are diagnosed with autism spectrum disorder (classical autism, Asperger syndrome, PDD-NOS).

    autism - school - and an invitation of the law

    april 2 2008

    Waking up was a kind of surprise.
    It has been ages ago that I slept more than 4 hours. Wow!

    Ofcourse the whole family needed to shower at the same time.
    Leaving me 5 minutes.
    Well, I was downstairs on time, at the meeting on time... without feeling any stress.
    What a bit of flu can do. LOL!

    This time the schooldirector himself took the lead, which made the meeting far more quiet and to the point.
    I had one item on my agenda: making clear that I want no talking behind my back, because it leads to people wanting to save their face and reputation at the cost of the children and the parents.

    Right after his opening sentences and a sip of coffee I had the chance to jump in and say my bit, with the example I wanted to give. (I can't give it here for privacy reasons).
    It set things straight within seconds, so we could start talking about the future of my autistic son.

    Ofcourse they wanted him to come back to school.
    And ofcourse they wanted to make adjustments.

    But they made them a year ago already, and it didn't work.
    It's not about the amount of hours spend at school, it's about the amount of requested social interaction.

    Right at that moment a group of girls has a lot of fun, just in front of the window.
    They giggled a lot, talked with high voices, even we had to smile.

    Perfect to explain how some children with autism experience walking to the schooldoor.
    So many noises, movements, lights... and they make no real sense...
    It takes effort to complete an understandable picture, but there is no time, because new sensory stimuli draw the attention, kids that talk, sounds of the schoolhall...

    The schooldirector gave the impression he understood a bit.

    When a normal classroom wasn't an option, maybe he could study at an empty room.
    He can do that at home...

    So the focus of attention shifted to choosing another school.
    They had no new options... the schooladvisor has given them all last month.

    So we agreed that he won't finish his final exam, but will stay subscribed at school, just to do what the law wants.
    The schooldirector said he couldn't unscribe my son, but he can. And I told him so. But subscribing would mean an investigation from the schoolinspection, and that's what they don't want.

    Almost at the end of the meeting it turned out that it was not the initiative from school to invite us, but the council's wish.

    Thought so!!

    It's the law that all children have to attend school, and there are only a few exceptions.
    Homeschooling isn't allowed here.
    Nor is staying at home.

    But there aren't enough places for children with autism.
    That's why my son had to struggle so hard the past years.
    He had to go to a normal school, with almost no support.

    He was promised a place at an auti-class, but wasn't accepted the last minute.
    Going back to the normal school isn't an option anymore.

    So if they want to bring me to court.... so be it.

    At home I found an envelope... with the invitation to be heard by a representative of the council.
    A year ago I would have been stressed out.

    Now I could only smile.

    I don't care she mentioned the numbers of the passages of law.

    I don't even care to be questioned.

    My child is autistic and can't cope with the schoolsystem.
    There are special faciolities for autistic children and he was referred to them.
    But there aren't enough auti-classes available.

    I haven't created the problem, nor has my son.
    Society falls short.

    According to the human rights I should be able to choose the education which is best for my child.
    I've choosen.
    They can't deliver.

    I'm not the only one confronted with this problem. Not at all.
    This year about 50 children with autism won't be able to find a place at an auti-class.

    Which means I would be able to start an auti-school, when I had the money and the support.

    I have promised myself that when I will be brought to court I will use all media, all magazines, to make people understand why children like my son can't survive at a normal school.
    I will use all means to make clear in court that it's the duty of the government to create the school he and other autistic children need.

    Ofcourse I'm trying to convince people now.
    I'm not waiting untill then.
    But when there's the excitement of a mother of an autisic boy being brought to court, the media will jump on it.

    So for now I'm waiting for new developments.

    How does the lady of the council react to the report of the meeting of this morning?

    I'll let you know.


    And now I'm off to nurse those who are still ill here. (You see, moms can't be ill themselves.)
    Everything else has to wait untill tomorrow.





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    custom cards to deliver an important message

    april 1 2008


    Today I was asked how I would use a photo card outside any of the holidays.

    Well, I've been playing a long time with the idea to have a card with me to make people more aware of autism and how they can help children with autism.

    Something more than the card I gave my son with his photo, passportnumber and the text that he doesn't have a passport with him because he's autistic and he looses it all the time. That one call is enough to have me show the passport at the policestation.

    A card which looks happy and bright which says on the outside:
    "Hi, I'm autistic!", maybe even with his own photo, and gives on the inside at the left an explanation what autism is, and at the right some helpfull advice.

    Or with the text at the outside: "Hello, my son is autistic." and on the inside at the left an explanation and at the right some addresses where people can find more information.

    A card like this one:



    It can be completely personalised, with text and/or a photo or a drawing of the child.

    For teachers I would use another card.
    This one:




    On top: "How to help"
    At the bottom: "an autistic child".

    At the inside I would put at the left an explanation about autism, stressing the fact that autistic children process information in a different way than normal pupils, and at the left I would give a list of suggestions how to improve the learning process.

    Custom Photo Cards are not only perfect to send for christmas and other holidays, but are also perfect to hand out information that needs to be kept and be easily accessible.

    I've found out that they deliver the message far better than, for instance, letters to teachers, and most of the people remember the image and can find the card far better in their bag or drawer that when the information is given in a letter.

    The nicer the card, the more chance it will be put on display and will be read by others.





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    autism awareness month

    april 1 2008

    April is autism awareness month.

    I will try to post at least every other day about an aspect of autism.

    Parents of autistic children probably will recognise many sketched situations with a smile or a tear.

    It's unbelievable how many parents all around the world are fighting to give their children all the support they need, all the love and much much more.

    You can leave your link here, so I can make a list of all the post you have written about autism.

    Feel welcome to ask your question!

    You can come back here to find the latest additions.



    articles:

    For Autism Insurance

    march 30 2008


    WHEN: TUESDAY, APRIL 22nd, 2008
    TIME: 11:00 a.m. to 2:00 p.m.

    RALLY ON THE CAPITOL STEPS IN LANSING
    FOR AUTISM INSURANCE.

    Goal is to convince the legislators that autism insurance legislation should be passed in Michigan too.
    There's no place for discrimination in the USA they say, well, proof it!!

    The goal is to get more than 1,000 people to join together at this rally.

    For more info and ongoing updates, including maps, what to bring, etc.
    go to:
    http://autisminsurancemi.blogspot.com and/or
    http://michiganaction.org


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    schoolmusical (s)

    march 28 2008

    The girls had to audition today for the schoolmusical.
    They were quite nervous, because they didn't know what to expect.

    They're both singing in a choir, have 6 years of experience on stage with ballet,
    so they knew they wanted to go for the main parts.

    Ofcourse they had a peek at the first auditions, to get an idea what to expect.
    Then they quickly practiced a song and created a dance with pillows, large flowers and veils.

    Already it buzzed through the groups that only the names of the best would be written down.

    They both felt they did well, and saw their names written down during singing.

    The names of those who will get the main parts will be announced next week, but they already know that they're in for a least the songs.


    The schoolmusical is always a bussy time here.
    The oldest played the main male part in his year. He did marvellous!
    He had some great coaches to mold his stage presentation and he showed talent to remember all those suggestions and use them.
    I completely forgot it was my son on stage.

    We tried to motivate him to become a member of a theatregroup, but he never wanted that. What a loss of talent!

    In the year my second son left school there wasn't a proper musical.
    Instead we saw him take part in a professional dance performance, which was wonderful!

    My third son got one of the 4 main parts in the musical.
    He too showed he'd inherited the familytalents.
    The doll he made and had to carry with him only disappeared from the table to the attick last month.

    When my autistic son was in his final year, we all thought it wise he would hand out the leaflets at the door or stand behind the cookies and fill the plate whenever necessary.
    They completely forgot him!!
    He still feels hurt, because no one bothered to say sorry.

    And it still gets to me whenever I think about it.

    And now it's time for my girls.

    One of them has the same teacher as my autistic son had.

    I hope I can keep my mouth shut.
    I'm sure it's better not to ask her not to forget my girl. LOL!



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    the truth came out

    march 26 2008

    The truth always comes to the surface, one way or another.

    The "present school" of my autistic son reported him and us to the council because he wasn't attending the school he was supposed to go to.

    (I'm writing "present school", because here a child needs to be subscribed to a school. He is, but he couldn't cope there anymore. So he's not attending any school.)

    Well, we didn't have a school for him, as the school with the auti-classes didn't admit him after all. (After a wait of three months).

    So we contacted the "present school" and found out they expected my son to go to another school in another town. They were told he would go there.

    NO WAY!

    Again I was told I understood things wrong.
    (Yea...I'm a fully trained psychologist, I've been lecturing observational and other techniques, was known for my memory of written and spoken material.)

    I thought there must be something in the reproting of the school with the auti-classes, so I gracefully tried to solve the matter by asking a written report about the procedure.

    We got it in the mail this morning.
    Turned out the person has been in contact with the out of town school, without our permission, but also without telling us as much.
    When she mentioned that school, we immediately told her that that school wasn't an option.

    Instead of telling that to the "present school", she only told what she wanted us to do, not our reaction.

    I wish people kept matters straight and clear.
    Now we've been reported to the council on the grounds of not sending our kid to a school where he should be subscribed, whereas he isn't subscribed there.

    I'm getting sick of this all.

    Well, talking about it reached the ear of my autistic son...
    School is a problem-item at the moment so we've had again a melt-down.

    I'm not sure how long anymore I can handle all these people who only play fair for themselves.

    Wish I had enough money to start a school for autistic children here in town.
    So many parents go through the same and it really eats energy.
    And for what?


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    Some good news.

    march 21 2008

    Some good things happened this week, and I'm very glad, because the scales of life needed to be a bit more in balance.

    The psychiatrist of my autistic son was completely happy with the choice of school for him.
    We won't know if there's place untill may, but we can take it from there.

    Because my son will be at home for some weeks we took the chance to completely change his medication.
    It was needed, because the Risperdal caused a tremendous weightgain and a hypothalamic disregulation, resulting in continuous hunger.

    I'm glad we took the chance.

    I asked him if he could help us to get a dyslexia declaration without the enormous costs.
    He jumped on it and arranged that my daughter will be checked for ADHD and dyslexia. Resulting in the so much needed declaration.
    Because it's a psychiatric consultation with neuropsychological assessement it's free!!!

    I'm so happy!!!