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 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:

a cure for autism

Who diagnoses autism and how

ASD, melatonin and sleep

The oldest and education

autism awareness and a smile

workshop: Going to the Heart of Autism

autism in libraries

the same psychiatrist, oh my dear!

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This month all my earning
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Alcohol rehab

april 25 2008

This evening I saw an interesting program about an alcohol rehab.
They were supposed to give group therapy, but in fact it was a combination of individual and group therapy and unsupervised time.

I've worked a while at an alcohol rehab facility and I was amazed by the way these people were treated, and by the fact that there was no one at the facility to deal with the people for long times on end.
The program gave me the idea that the therapist thought himself to be more important than his client. And I certainly didn't like the game he was playing.
Making a client dependent and handing out compliments when this dependence is the center of the talk is certainly not my way of dealing with clients. Ugh!

At Cliffside Malibu they also have an alcohol rehab.
I think that should be brought on TV. I guess it won't, because they respect the privacy of their clients far too much.
They offer a program that is thought through well, based on scientific research and experience, and puts the client in the centre of attention.

Well worth to look into when you need assistance and support for any addiction.

The oldest and education

April 15 2008

The oldest finally got the letter of admittance to a special school which fits his educational needs.

He's got asperger syndrome and ADD and we feel this is really a new start.

When he was young he was considered shy and clumsy.
He walked in a strange way, but apart from telling us he needed fysio, no one thought a bit more about it.

When he went to school he didn't socialise much and seemed to be in his own phantasy world.
At times teachers made a remark, but immediately told us it was not allarming.

When we went for check-ups we were told not to worry so much.

It's almost the classical story.

At college he was told to work more and more organised.
He was called lazy.
Far too often.

Even when we went to see a childneurologist (now a professor) we were told not to worry.
He scanned him, had a psychologist have a look and told us all was fine.
He wouldn't be very social, but the world florished with scientists, and he sure had all the intelligence to become one.
Maybe one in the computer area, as he had a large interest in laptop computers.

Well, he became a computerfreak, but school didn't went well, and he was never able to finish a year, because he simply wasn't able to live up to the expectations.

Then he dropped out of school, and became even more of a computerfreak.

But where to skip all the normal schoolrequirements and get a specialised education?

It took more than a year to get him diagnosed and years to find someone who knew the ins and outs of the whole world of disability income and education.

He's now moved to a trainingshouse, and can start at a special school within two weeks.


Some people don't understand why it took so long.
Well, when you told professionals 23 years ago that you thought your child had asperger syndrome, you were told you were nuts yourself.
Not in so many words, but they all said I was wrong.
The consequence was that he got all the support he needed from home. But a mom can interfere with school and others areas of life only so much.
So he didn't get all the support he needed untill the knowledge and awareness about asperger syndrome and ADD was more widespread.

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
and rate this article with a free click.
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stay at home mom

march 4 2008

Someone asked me what I do all day.
I'm just a stay at home mom.

Well, my last day was, without details, filled with this:

• 6.30 waking some of the children and their dad. The shower runs, the pile of wet towels grows.
  Also the pile of sandwiches, and row of other breakfast food and drinks.
• 7.00 the first one leaves
• 7.45 the second boy leaves... late.
• 8.00 the girls leave. After I've given one of them a letter for the teacher.
• 8.05 boy 3 passes me upstairs and jumps under the shower.
• 8.15 after asking and begging I can finally shower too.
• 8.30 I'm leaving home with wet hair.
• 9.25 after bycicling and 2 busses I arrive for the first meeting
• 9.30 meeting with son 3 and his psychiatrist. The diagnosis PDD-NOS is nearly ready.
• 11.00 after a coffee I'm at another building and meet with son 2 (ADHD and dyslexia) and his therapist.
• 12.05 short talk with the secretary to ask her to present my son's psychiatrist a form that needs to be signed.
• 12.15 Running helped to catch the buss.
• 13.00 I'm too late to have lunch with the girls, so I eat something with my autistic son.
• 13.15 Mail, laundry, vacuuming.
• 14.15 call from an educationadvisor for an intake. We want advice or help to get my autistic son at a good school, if there is any......
• 15.00 try to work a bit.
• 15.15 girls arrive home with a letter from the teacher. She tells me she wants me to come to school at dinnertime, because she has a babysitter at that time. I explain to the children that she invited me for a meeting. Considering the normal rules of etiquette she has to be as polite to make me choose the time. (I have 6 kids and no sitter).
• 15.30 motivating kids to clean their room or 15 minutes. In the meantime I try to work.
• 16.00 mail from school about a problem with one of the boys. Ugh! Writing a reply while there is loud noise from drilling and hitting bricks. I'm happy I can still hear my thoughts.
• 16.10 starting preparations for dinner while trying to help one of the girls with her bagpipepractice.
• 16.20 son arrives home. He needs things for school. Mailing his dad to buy it and bring it with him on his way home.
• 16.25 while the boiling water is playing around the potatoes, one of the girls is practicing on her chanter and the drilling and hitting goes on, I work a bit.
• 16.45 mail from a friend who is journalist. He sends me an article and he wants my opinion... NOW.
• 17.00 soup is ready.
• 18.00 dinner is gone, the dishes are ready. The drilling stops and the world feels empty.
• 18.05 helping with homework.
• 18.20 one of the boys comes home and tells us it snows outside!!!
• 19.00 homework is ready, I try to work a bit with a cup of coffee.
• 19.20 talking with the girls. Then they're off to bed, I do the dishes and answer the phone to advice a collegue about a client.
• 20.00 I want to watch the news on TV, but I fall asleep.
• 20.15 fresh and wide awake again. Having a look at the girls, clean the bathroom.
• 20.30 the father of the kids arrives home from work. Update about the day. Discussion about the attitude of the teacher. Split up tasks that needs to be done tomorrow.
• 21.00 Holby City on TV...for me!
• 21.50 dealing with a hungry autistic boy, check laundry and fold the dry items, try to work a bit online, try to find out which articles of the law are dealing with the renovation noise in the neighbouring home. Talk with son 3 and a bit later a long talk with son 2. Help a friend with website.
• 23.30 try to get two boys take their meds and wave them to bed.
• 24.00 walking with son 2 near the lake. Enjoying the stars and trying to get used to the cold. Walking neighbourhood surveillance. It's quiet.
• Visiting some online friends, keeping an eye on the elections, start the laundrymachine again, clean the kitchen....
• 3 in the night..... to bed.

bullying, bed and bussy

february 14 2008


Its early morning.

2 hours ago I went to bed, but I couldn't sleep.

Worked all night to get the text on paper that should be signed by the psychiatrist of my autistic son. It's needed for the admission to the auti-klas.

Today I have to go with my second son to his psychiatrist for another step in his diagnosis, so it'll be easy to get the signed paperwork from the desk and bring it straight to the school.

I was too stressed and too tired to sleep, so I went downstairs to help the girls to school.
Son nr 3 told me about a problem at school.

Bullying, and a teacher who reacts like he's blind.
We've been in the same situation several times before, so this time I decided not to be nice tothe teacher, but just write the principal a mail. I asked him to solve the problem wisely.

I hope he does, because I can't take much more stress.

The girls have their last morning of national tests and went to school smiling. In their bags a present for their boyfriends. I can't remember being bussy with valentine's day so early in life.
It's fun to seen them.

This week they need to make a choice for a new school.

This evening they'll attend a special info-class at one of the schools.
Saturday they'll have a look at two others.

It's the choice between a good school nearby. The convenience of 5 minutes to and fro.
Parents evenings that won't last much longer than needed. And some nice cultural activities.

And a school about half an hour from here, where they'll always arrive sweaty because it's uphill and at the ther side of a high bridge. This school is buzzing with cultural activities and creativity, which might overpower the need to study.

Well, I'll jump back in bed now the kids are to school and try to sleep one cycle before taking a shower and going with my son to his psych.

See you later!

Have a great valentine's day!

the new psychiatrist

december 21 2007

We've been to the new psychiatrist of my autistic son...

We've should have met the guy ages ago....

Wow!

He re-assessed my son. So now he has the proper DSM-4 codes and gets help more easily.

While we were there he wrote the letter to back up our request to transfer our son at the auti-class. Said they could contact him anytime for more info. But his letter was as clear as could be.

Started to change the meds.

And told us all that he was going to start therapy in january.
He's going to work directly with my son.

So I got all I wanted and even more.

He was able to get my son talking in no time, made jokes, and was himself.
Which is such a relief!

I feel we can trust this guy.

We got his phonenumber and email and can get in contact anytime.

I caught myself smiling the rest of the afternoon.

Am I dreaming?
Auch!!!!

Good.........

Almost leaving...

december 21 2007

I'm showered, wearing a nice outfit, and I'm waiting for my autistic son and his father to go to my son's new psychiatrist.

I hope the guy provides all we need and want.

Untill now I have been guiding him through life with hardly any help at all.

The former psychiatrist only wanted to institutionalise him, and I don't think that's an option.
Certainly not when no one can tell me what they do better there.
On top of it, it was a place where the still use confinement in a bare room, to make people behave.

OK, they will behave in the end, out of fear.
But it changes the personality too of a person, and when my son would come back after such a "learning time", he would certainly start to show the unwanted behaviour all over again.

I've made a little list.

Not because I'm a listmaker, but because I now really want to get things done.

1. proper medication
2. counselling once a week or once in two weeks to have him check his ideas with reality and help him motivate to do more.
3. the paperwork that needs to be done to get the transfer to the auti-class, and a back up in the process
4. have a thorough look at his eating disorder.
5. re-assess him, so we get rid of the PDD-NOS diagnosis and have the right terms on paper.

I'm off!!!

part 4

december 8 2007

Part 1, part 2 , part 3

Yesterday I did all that was in my power to get in contact with the person at the school of my autistic son who informed me about the decision of the careteam.

She didn't react at all.
Either she wasn't at work, or she didn't dare to take decisions without consulting others.

So I tried to get in contact with the careteam.
Phuh, no adress anywhere.

But I found the email from the organisation that organises the teams.
Mailed them asking for information and just giving enough info to get them interested and send my mail through.

The found out which worker at school is the one who needs to get all the paperwork together for the files.
YES!!!

Took 4 hours to make a mail that contained every little bit of information, making clear that we have found a place at the autism class at my sons level and that we're in the middle of the application which on itself should be enough to stop the team.
Then mentioned all different areas where he experiences problems, giving for each area the professional dealing with it, the actions we take ourselves and stating why they don't need to be involved.

And ofcourse stressing the lack of communication.

Are they nuts????

By the time I was finished my bloodpressure must have reached the height of the mount everest under bloodpressures.

Wanted and got an appointment

december 6 2007

When I calmed down after this, and writing her a mail stating that I didn't want youthcare to go talking about us anywhere (they do anyway), I started to think how this ridicilous situation can be anded as soon as possible.

First I wrote the Porpeffor in psychiatry a mail stating why I thought he needed to make an appointment with me and my autistic son straightaway.

It's not our mistake that we're not getting proper psychiatric care.
We're dependent on what those psychiatrists do with their agenda.
OK, I can protest, but they decide.

The pedagogue said in her mail that they also agreed she should contact the school with the autism classes.
She said she had last year and she had put my son's application in, but I never got that confirmed.

I thought it best to get matters into my own hand and not be dependable upon the actions of others.
There's one way to tell youthcare they should have contacted us first....
Drive the train myself and take another direction.

So I went to the site of the school with the autism classes and got help from above: the weekend of the 15th the open their doors to new students and their parents to have a look if they like the school enough to fill in an application.

Thanks!!

So I contacted the school, tolf them that my autistic son tried special education but that he had difficulty dealing with some of the behavioural problems of the other kids, and asked if the day was also for kids and parents who start at another year than the first.

Got a very nice mail back.
Ofcourse it was also for us.
We're very welcome.
Just provide the adress and they would send an invite.

Then I started looking for the person that was contacted by the pedagogue.
To my amazement her emailadres was on the site.

So I mailed her, said she had received an application from the pedagogue but it was never confirmed, and that I was attending the open day with my son and looked forward to meeting her and have a little talk. Maybe even make an appointment.

Within two minutes I had a mail back.

There was a place available soon at a higher level than my son is in now, but she thought it would be wise to have a talk before the open day.

I mailed back: tomorrow morning I have a slot at 11.

The reply was simple: "See you then."

Wooooooohaaaaaaaaaaaaaaaaaa!!!!!!!

Interesting is that this school uses the serviced of the best autism psychiatrists and psychologists.
The organisation we applied for (and got the papers back because the psychiatrist didn't use the right forms).

Sounds good, doesn't it?

The prof

december 4 2007

Remember we were jumping from joy that we finally had an appointment with psychiatry for my autistic son?
Next friday we would meet the new psychiatrist.

I got mail today, in which I was asked to get in contact with the Professor of Psychiatry.

Well, he's a nice guy, very involved in research, so I thought that maybe he wanted my family in a researchproject for families with more kids with autism spectrum disorder.
I've tried to get the department here interested in initiating a clinic for adolescents.

I should have know better than to let my phantasy jump in.

He wants to take the case of my son.

Well, I'm OK with that.... guess they think I'm difficult to handle. LOL!

Because the guy is bussy we couldn't get an appoitment earlier than.... january 30th!!

I accepted, so the date wouldn't be even later.

But that date.... it's so far from now...

So far!!!!

psychiatry and meds 2

november 27 2007

After calling psychiatry again for the meds, and have them fax it to the pharmacist, we finally have them.

What a relief!

I don't think it's a good beginning for the new psychiatrist, but for us it's a nice way to get to know here a little better.

How will she deal with this?
Will she ignore it, make excuses?
Give us an extra prescription in case of?

Well, I finally have my answer.
I now know how he is without meds.

He's just himself, but he's far more frightened, stressed and his meltdowns have the character of lightning: fast, loud, and fierce.

psychiatry and meds

november 27 2007

After all the mistakes at the psychiatry department another one is added.
Last week I called for a new prescription Risperdal for my autistic son.

Shouldn't have been a problem.
In the past we called, had the paperwork at home two or three days later, and that was it.

Maybe we had a little devil telling us problems were ahead.
We called 4 days before running out of pills.

It's 6 days later and still we have no prescription.

At least we know how he is without Risperdal. Thank you.
Or need I say that I completely understand again why we agreed with giving him these meds?

The day before yesterday we asked a friend for one dosage.
But he had a problem taking it because it was not his usual one tablet, but there were two little brown tablets.

I've phoned psychiatry again, told them he was without meds for two days already and I would carry him straight to their front door at the end of the afternoon, unless they faxed the recipe straight to the pharmacist.

The girl said she would take care of it.

Will she??

to be continued...

not the right forms

november 20 2007

It's unbelievable!

The former psychiatrist of my autistic son has just before we switched to someone else send in the applications for the short stay home and special support after he has finished his final year.

We got a reaction today... telling that they couldn't take the application to the administration because not the right forms were submitted.

Argghhh!

This makes me feel so sick!!!

We could have been in the system for half a year already. The right forms were available for our doc, and he has got them when we that he'd be the right person to submit the request.
She said she could do it better.

If only she'd asked!!!

Finally!

november 12 2007

The visit to the doc with my autistic son resulted in an unusual response of our doc.

He doesn't often interfere with the treatment of specialists and certainly never tells them what to do, but like me he's appalled by the lack of support we're getting from psychiatry.
He's going to write the new psychiatrist a letter stating that we need an appointment short term and that there needs to be more attention for the meds my son is getting and his eatingdisorder.

I was so glad when he said so.

Just before that he really got to me when he looked at the last bloodtests and said nothing was wrong and my son is healthy.
He's obese!! And he grows kilo's instead of brains.

I'm worried sick.
He won't get anything sweet or chips or unhealthy from me.
But his dad gives in, so each evening we're caught between him having a meltdown or complaining like hell and his dad giving him something.

I have asked for help a hundred times and finally the doc did something.
But because he doesn't want to interfere with the treatment of psychiatry, he hands the problems over to them.

I hope we'll get real help.

I'm at the end of what I can do and want to do.

first step

october 26 2007

Our second son needs a diagnosis.

Because two of his brothers deal with an autism spectrum disorder, and another brothers has got ADHD, he wants to know if he's dealing with the same problem.

It took a long time to convince him he needs a diagnosis yo get the help he needs.
Untill now he's had good and bad times.
The bad times characterised by meltdowns he can only partly control, unkind behaviour to others and irresponsible behaviour.

I feel he's a few years younger that his passport says. He acts accordingly.

One way that's very troubling is that he can't deal with any pressure and he can't find connection with people of his age at school.

He has friends. The little group is together for over 10 years now.
Some of them have autism spectrum disorder too, and I think they're keeping friends because it's safe and convenient.

Today the pile of questionnaires disturbed the quiet when the fell on the doormat.

So that'll be hours and hours of answering questions.

Then a waitinglist of 6 months will follow.

That's so very disturbing, because he doesn't go to school in the meantime.

Argghhhh!!!!!

back from the psychiatrist

october 23 2007

They're back from the psychiatrist of my son with ADHD.

She took the effort to take his bloodpressure and his weight.
120/80 and 67.

The medication hasn't changed.
So it's Ritalin with all the rebound effects.

Meds like strattera and concerta are too expensive.

We've been waiting to get him into behavioural therapy.
Mainly to make him get more influence on his impulsive behaviour.

We've watched the mail for nothing.
She forgot to apply!

That's the second time this last months a female psychiatrist there forgets to work on the agreements made during a consultation.

Psychiatric home

october 19 2007

A while ago the psychiatrist of my autistic son wanted to send him to s psychiatric home.

We got no information, not even a leaflet.

When I confronted her she said we'd better go and have a look.

We never went there, because it's 5 hours travelling and we knew we couldn't live up to the expectations of regular meetings during the week and visits in the weekends, knowing we would be from home all day.

I never could find information about the facility.

And I still can't find anything but a few forums where former patients discuss their experiences.

Isn't that strange?

Attention Disorders

september 8 2007

Having two children with different types of attention disorder I always value good oversights and explanations.

I've found a site that give a good overview here.

In the sideline the discussion is mentioned between professionals that state that attention disorders are just the natural differences between people and the professionals that ADHD is a biological/neurological disorder.

My oldest has got ADD.

It's often said it's ADHD without the hyperactivity.

Forget it!

It's a complete different disorder.

He can focus when he's able to control the input to his brain. So he can play a computergame, read a book, and watch a movie.
But oh my dear when you distract him.
It means you'll pull him out if his selfmade prison and expose him to far too many influences.

He can stay kind and listening, but when you ask him what you have said he will use all he has to escape from giving an answer.
He just doesn't remember.
Either because his mind is clinging to what he was doing in a desperate attempt not to forget what he was doing, or because he can't make a choice between impulses.
He needs to focus his mind a 102% to puzzle all the impulses into meaningful information.

My ADHD son can do many things at once.
He's not paying attention during conversation it seems but when you ask him he will convery the message loud and clear...only you will have the job to choose between a lot of information he just pours out over you.
When you were telling him a story life was not on halt. A fly was flying to the window and landed just a cm under the curtain, there was a faint smell of the lemon in the ktichen and the neighbour started his car.

There two are not opposites on a line...they're different. Completely different.

call for parents of autistic children

HOFSTRA UNIVERSITYDEPARTMENT OF PSYCHOLOGY

Dear Parent(s):

My name is Karen Chin and I am a Ph.D. student in the Combined Clinical and School Psychology program at Hofstra University.

I have worked with children with autism and disabilities for the past eight years.
I am currently working on my dissertation and am requesting your assistance.
I am seeking help from families of children with autism to investigate children's early responses to their natural environment.
I hope to observe those responses by viewing families' home videos.
The purpose of this study is to compare the early behavior in children with autism to those of typically developing children, and thus to ultimately identify early indicators of autism.
It is my hope that as we learn more about the developmental difficulties of these children, we will be able to provide more improved and timely services for families in the future.

To participate in this study, you should have home movies of your child during infancy from six months to two years of age. I would appreciate your allowing me to copy parts of these videos so that I can study them.
I would also need to interview one parent about your child and to assess your child's current behavior.
This process will include an adaptive behavior assessment of your child.

If you are interested in participating or would like more information, please call me at (516) 330-6769 or contact me by email at http://us.f570.mail.yahoo.com/ym/Compose?To=kchin2%40pride.hofstra.edu, at your earliest convenience.

Thank you for your consideration.

Sincerely,

Karen Chin, M.A., NYS Certified School Psychologist Ph.D.
Candidate in Combined Clinical and School Psychology Program