Lots of thanks for all those who helped to create attention for Gomey, so he wouldn't disappear in anonimity, like so many autistic people who are victim of "the system".
More than 80.000 people clicked the graphic, which was displayed on a countless number of blogs. Bloggers blogged about Gomey. People reacted on Twitter and professionals did what they had to do.
So a huge "THANK YOU" to all of you for taking a stand for Gomey.
What happened:
A human rights lawyer, Julius Grey, got involved and he called the hospital.
Gomey's mother also spoke to an ombudsman (a woman) of the hospital, and she mentioned to know that the lawyer had been in contact with the hospital.
During a visit to hospital the woman asked to speak to Gomey privately.
She asked him whether he wanted to go home or to an english speaking hospital.
(It turned out that the judge has made a request to transfer him to an english speaking hospital, but the french one was reluctant to let him go there.
They prolonged his stay and even tried to persuade him to stay there.)
Ofcourse Gomey wanted to go home and eventually he was able to do so.
At home he was very insecure. He kept asking if they would come again to get him.
His feeling of safety has been shaken in such a bad way that he wants to move out of town and out of Quebec. He would welcome a move out of Canada.
The fact that he wants to leave his wellknown life makes clear how much his life is shaken by what has happened. His feeling of living somewhere secure and stable has gone.
Any help to get the family a new place to live will be appreciated.
Because the winter took it's time this year, Gomey has been able to ski again.
And he has played scrabble again.
He's trying hard to find a balance and to deal with his bad memories.
He's traumatized.
Unnecessary traumatized.
Thank you all for helping!!!
Gomey is one of many autistic people who are victim of the lack of knowledge of people about autism.
As soon as authorities only listen to those who hide their lack of knowledge behind a professional image people become a victim and are traumatized.
Mistakes can not be completely undone, Especially not, because there are no laws that grant therapy after mistakes, even though some professions, like psychologists, have ethical guidelines to undo harm that is done.
Like Gomey, many people all over the world live in constant fear to be taken from their homes just because they are autistic.
Unless we are able to create more understanding and acceptance for the uniqueness of each and every human being, and unless we're able to make it impossible for professionals who make these terrible mistakes to work ever in the area of psychology and psychiatry again, Gomey will be a symbol for all these misunderstood beautiful people.
Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts
Fixed post
For Gomey and his family daily life, dealing with the challenges of autism, has changed into nightmare.
Lack of knowledge by others often disrupts the relative wellbeing of autism families, and here too this is the case.
Gomey and his family worked hard to learn to deal with specific autism issues.
Now he's 19 he's a so called high functioning autist.
On wednesday january 27 Gomey and his mother received a message he would have to leave his home and within 2 hours 6 policemen and several social workers came and took Gomey out of his secure environment and brougth him to a psychiatric hospital in Montreal called "Hôpital Rivière-Des-Prairies".
The young man, who has never slept a night outside his home, was brought from the familair, english speaking, environment into a complete strange situation without any preparation whatsoever. Added to his, for autism characteristic, impairment of cummunications skills a language barrier, because the hospital is french oriented. He does speak some words in French, but not enough to feel comfortable... if that would be possible under those circumstances.
Why he was brought to a hospital where french is the language of communication in a town where also a hospital is available where english is spoken is a big question.
At february 1 Gomey finally could hug his family. The days before familymembers were not allowed to visit or call him, information about his wellbeing was withheld.
Gomey himself doesn't know why he has to be there. He feels imprissoned. He has lost everything he had.
He wants to go home with his mother, far away from the screaming he hears often during the day.
And all due to one person who doesn't understand autism.
She's a social worker who took over the yearly ritual of a short assessment of the family to reach an agreement about some hours of respite care.
She just started 4 months ago and after speaking with Gomey for not even an hour she decided she knew it all and put the whole train of breaking up a happy family in motion.
She took matters in her own hands, probably without even consulting the professionals who know Gomey well and who never saw any reason to doubt Gomey, his family and his living conditions.
The court order said that Gomey is is a danger to himself, to others, and even suicidal.
Something which is not recognised by anyone who knows Gomey.
And even more important: the doctor in the hospital that he is currently staying at informed the family that he doesn't self mutilate and is no danger to others or to himself.
Yet, on february 2nd, the court decided Gomey should stay at the hospital 21 more days.
Those who started and kept this mistake in motion want him to move to a group home.
Not the home we all would wish for our grown autistic children, where they have support to learn to take care of themselves and find a place in society where they can feel happy, but a kind of psychiatric ward. A family member said: "Here a group home is a punishment, and is run down, for mostly mentally unwell people
very sad."
All against the wishes of Gomey and his family, who want him home, who want him to develop himself at his own pace and to his own abilities. Like other autistic people all over the world.
Gomey was a nice young autistic boy who went to school with an aid provided by the board of education. He's still going to school a few times a week, because he's unable to go to college with his peers, and because he's eager to learn.
(Taking him away from school also means he's not going to school).
Gomey plays clarinet, guitar and piano. When he feels happy he sings. He's learning Spanish because he loves languages too.
He doesn't have close friends, which is a characteristic of many autistic people, but he's engaging in social activities with his family nevertheless.
They go on hikes, they love traveling to Europe when they can afford it, and his mom taught him to ski.
He was delighted that this winter enabled him to ski a few times and he was looking forward to do so a few more times. Which won't be possible now he has to stay behind locked doors for so many weeks.
Gomey loves looking at old pictures, especially of his visits to amusement parks with the subway and street cars. But even those pictures are not with him, and there's certainly no one to share his memories with.
And he can't replay scenes of the amusement parks or create new games with his brother. Something they both enjoy.
Gomey is important to his family members, they love him and he loves them.
Why the new social worker drew the damaging conclusion from meeting Gomey for not even an hour is the main question.
Even psychiatrists and psychologists take more time to access suicidal risk.
People who know Gomey question themselves how someone can decide he's a risk for his environment.
In all those 19 years he has never harmed someone, never attacked someone.
Gomey was recognised for his hand flapping.
Many autistic children display some sort of repetitive movement. Especially in times of stress or overstimulation.
Gomey learned to listen better to himself and as he grew up he learned to recognise difficult situations and often he's able to deal with them, sometimes with and sometimes without help.
There's no reason whatsoever to state Gomey is automutilising (physically harming himself).
Gomey has been seen by doctors for a metabolic disorder. He has been hospitalised for weight loss and he's now treated under medical supervision from a special clinic in Seattle with a special diet.
His mom was taught how to prepare Gomey's food and she is strict om keeping him on this diet. Especially after Gomey reported he felt stronger and far better.
That his mother keeps him on this diet might have been part of the reason the social worker decided Gomey need to leave his home and family.
The family lives in Sainte-Adele in Quebec, a small town. Before the family lived in Toronto, where they had easy access to services which are not available in the small town.
The family is afraid that now the hospital has assessed that Gomey isn't automutilating and is no harm to himself or others, the attention will shift to his mother and the diet.
Because Gomey's metabolic disorder is rare the diet is rare too.
Even though the social worker is no doctor and no dietician, she has come to the conclusion that this diet (low oxalate diet, see http://www.ohf.org is not of benefit for Gomey.
Maybe she didn't understand that his loss of weight wasn't due to the diet and he was seen by the best of doctors.
Maybe she doesn't know that quite a lot of autistic young people have problems with either eatinghabits or weightissues, and that little is know about this correlation.
Maybe because Gomey's mom didn't agree with Gomey participating in a work program at a time he needed his energy for other things, she has decided his mother is not cooperative enough.
Maybe she has decided that Gomey's mother harms her son with a diet that can't be of harm when the proper supplements are provided, Like Gomey's mom does.
Who knows?
Gomey's family doesn't know why this social worker acted the way she did.
Before Gomey was taken from his home by a policeforce and several social workers he was happy and told his family he felt happier than ever before.
The family needs a lot of answers and Gomey needs to be free to go where he wants.
He's 19 and didn't commit any crime, so there's no reason at all for a 6 headed policecorps to take him from his home without his consent.
We need the story of Gomey spread to those who can take action.
We need lawyers to look in his case, because his rights were violated.
We need psychologists and psychiatrists who dare to speak out on behalf of this family.
Social workers who want to give a second opinion about the family,
and professionals who want to work directly with the family to support them and solve the matter.
Anyone who can contribute from his or her profession is welcome.
There are so many questions that need to be answered,
files to be requested.
Why was Gomey taken from his home?
Why did they come with so many people?
He is 19, so the law allows him to make a well informed choice. Why where his rights violated?
Etc etc.
We need you!
The family wants to cooperate in any way to solve this matter.
What you can do:
- Copy this graphic or the code and put it on your blog to draw attention to this story.
(If you're able to, download the graphic and upload it to your site. Either link properly, or put the url of the grapghic in the code.)
More graphics will follow.
Inform me about the url. - Write about Gomey and autism.
Let me know your url, so I can mention it here. - Inform your local papers and write/mail to those in de Montreal area.
Ask me for a press release, in case you need one. - Inform any of the media.
- Twitter about this story
and follow ActionAutism or Laanetweets to keep updated. - Send a card to Gomey and his family to show your care and support. Others will notice these cards too and know that this family is watched. Maybe they'll take better care.
- Rock the world so Gomey will be set free.
Gomey's family are an example of many families who have to deal with professionals who make daily life a hell, because "they know better".
Many parents fear interference of Childcare and other organisations because they take care of their children in a way which is not like society takes care of normal children.
Link to updates can be found at the top and here.
Autism is a neurological disorder which can't be cured, but can improve when the environment is able to adjust to the needs of the person.
Because of a lack of differential diagnoses many children are considered autistic and won't receive proper support and therapy, whereas they show autistiform behaviour which can be influenced with proper treatment of the underlying physical condition.
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.
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!!!
more info here.
Sometimes someone can be caught by such a strong inner urge that nothing, nothing can stop him.
When I met Michael Buckholtz at Twitter, I felt this is one someone special.
Oh yes, he is.
He was diagnosed with high-functioning Asperger's Syndrome and OCD and he battled all the battles children, adolescents and grown ups with that diagnosis are faced with.
Like in my family all males in his family had their own unique form of austism.
His perseverance and his positive attitude made him into a caring person, who fully understands the problems autistic people and their families are dealing with.
One of the main problems is finding enough care, support and therapy.
It simply costs too much money to do what's needed.
Michael founded the AACF, INc. The Aid for Autistic Children Foundation, Inc.
It's a non-profit organisation which aims to reduce the financial burden on families.
But he does more.
Today he started a hunger strike to bring the needs of autistic people to the attention of the media, the governments and to all who need to listen more.
Each day he will blog about his condition here at his blog.
There are several ways you can support him.
I don't think you can talk him out of the hunger strike, but you can report his efforts to your local media, because austism concerns us all.
You can blog about him, and about autism.
When you don't know what to blog about, just get in contact with Michael, with an autism family in your neighbourhood or online, or with me.
Buy Michaels book.
He knows what he's writing about.
You can find everything about it here.
Michael is at twitter: @TheBuchNation and @Aid4ASDKids
I wish Michael will reach his goals.
Let's all help him!!
Download this image to your computer and upload it to your site.
Link it to:
http://autismsupportnetwork.leveragesoftware.com/blog_view.aspx?CustomerID=buckholtz
Top one without white border:
...and
I can put your name on this 125x125 button for you.
Please mail me with the subjectline: custom button for me, with your name and email.
This button can be used in your sidebar, linking to one of the sites of Michael or here, and on entrecard, for instance.
Whereas the American and English media spend a lot of attention on autism awarenss month, the attention in the Dutch media was short lived. At the end of the month the Mexican Flu completely pushed the whole subject aside.
Thanks to the enormous amount of tweets and blogposts, mainly in the english language, we got a lot of questions during autism awareness month.
It can be seen that basic knowledge is more available to a broader public, because we got a large diversity of questions.
One cluster of questions was about autism at work and autism among grown-ups.
We use the word "autism", but in fact we mean the light forms of autism spectrum disorders we can find among people who are participating in the workforce. Most of them are not diagnosed.
Because knowledge about the characteristics of autism has become wider available, people with an autism spectrum disorder or autistiform behaviour are spotted more easily.
During email and other conversations irritations about having to instruct certain people over and over again, changed into the wish to assist the employee and to describe the task adjusted to the person.
Irritation changed into self-relfection and adjustments.
We gave advices which were completely focussed on individual circumstances, but a few general guidelines can be given. (You'll recognise them from those used in schools.)
- Use clear language. (Many autists take language literally)
- Use pictures, schemes, etc.
- Split complex tasks into simple ones
- Describe the final product.
- Provide clear time-schedules
- Provide time for exercise. (A well exercised skill is never lost and the investment will be earned back.)
- Ask your employee whether he's found his own way of dealing with the task. Different is not always worse.
- It should be clear when initiative is expected and to whom the employee should turn to.
- Some people night a fixed routine. They need time to adjust to breaks, to working again after a vacation.
- Not all people are able to recognize faces. Uniforms can prevent recognition of fellow employees. (Use a visible and readable badge)
- Write down appointments and other information.
- Maybe the employee needs some extra attention during breaks.
- Stay positive. That's best for everyone.
April is international autism awareness month.
In the Netherlands a growing number of people is interested in the subject.
Don't hesitate to mail us with questions.
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