Wednesday, March 31, 2010

Storm

One of the kids told me it was forecasted, but I must have missed it.
STORM!

The trees rocked left and right in such a way that a few times I expected the tall tree at the other side of the road to break.
It didn't.

But the roof of the bicycle shed at the school of the girls was blown away.
Unbelievable!

When we had to go to the shoppingcentre this afternoon to get some very necessary items the storm was calmer, but still strong enough to make it hard to get there.

It was good I went this time, because I found a new kind of pizza.
Not that I like pizza very much. After eating them in Italy many years ago, all those here taste like cardboard.

But this one was OK.
Finally one without tremendous amounts of basil and thyme. Yea!
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Tuesday, March 30, 2010

Long ago

.

She was so small.

Not able to live the promiss
every baby should bring to this world
she brought silence,
which was so intense,
that it nested in my heart.

16 she should be now.
A tall young girl
with a bright smile
and caring blue eyes.

Instead I nearly died
and was amazed
the sun was still shining
when I opened my eyes
and found the world through my tears.

She touched my life
like a butterfly in flight
and left her everlasting spirit
in my heart.


.
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Monday, March 29, 2010

Manic Monday #205



How do you feel about couples that share an email address?

I wouldn't like it at all, because our interests are very different.
The father of my children gets lots of mail for his work, I get lots of mail for me. It would take a lot of time and effort to get our mails sorted.

I also value my privacy.
Not that I have things to hide. But it feels better to have my own inbox.

When mails need to be read by both we send the mail through. No problem.

How open about your life are you in the various online arenas?

No names of the children, no family name, no photos.
Because I'm a psychologist I have to take care of privacy, because you'll never know how former clients and their family will react.
I also think that my children need to be safe on internet.

I'm quite open about our struggle with autism and when people comment I don't want them to comment everywhere were I go.

In the past someone has badly violated my blog privacy, and when I think about it I still feel irritated.

So my friends and family know I blog, know I'm quite open, but also know that they can't be traced back as easily as when I would use photos and names.

On average, how many hours a week do you spend online? Do you think it's too much?

No idea.

It's not too much, because I need it.


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Sunday, March 28, 2010

working on the new autism site

Today I've worked a lot on the new autism site.
It'll be very nice when I'll manage to find out a few things that need to be changed.

I'm using an artistic design, but when I had it up and rolling it turned out that some functions weren't coded and some of the stylecodes were not yet in place.

I want to launch the site tomorrow, ready or not, so there's a lot of pressure.
But on the other hand I have to deal with my perfectionism.

Thinking about changing teh logo of the organsiation too.

At the meantime I'm trying to keep my autistic son within boundaries of behaviour.
He's got hours that he behaves well, and hours he just lets his emotions go, splashing them all around him.

I'm not sure if it's just the way he is at the moment, or that he's manipulating us, because I've said that he's getting as old that moving out should be something to think about.

We'll see.

Well, changing to summertime won't help.
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Saturday, March 27, 2010

It's autism every day

I've been very busy with... everything.

Saturday is always the busiest day of the week. Groceries, cleaning.
It's like work never stops.

In between we have to deal with all those who walk in and out, and the tempers of my autistic son.
He's getting worse, and we all experience more difficulty dealing with him.

Add to that the autism site that needs to be ready yesterday, and put a bit of designer perfectionism on top...

The past year I've made so many sites for people that I took it for granted that on this site the date didn't show up and had to be added by hand to each post.

Well, today I had a clear moment and with one push of a button it's added.
So when you see me adjusting posts, know I only take the date out. LOL!
In the meantime I'll be listening to a political discussion.

Multitasking is one of the things to stay on top.

In case you want to propose me for the national autism friendliness prize,
please go to this site now.
The 28th is the last day to mention someone.

Translating the form for you:

your name
your phonenumber
your email
who deserves:
name:
phonenumber:
email:
site:
motivation:
remarks:

Boy, could I do with some recognition!
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Friday, March 26, 2010

Grinding with Laane


There are days I long to sit at my grandma's table and grind coffee with her.
The strong smell of coffee, the sweet light through the window and the soft smile on her face.

Wouldn't it be a great introduction for a meme?

Well, you're allowed to consider this as much.
When you want to take part, let me know and I'll send you the graphic, with your own name.

Grind away what happened this week so you can start your weekend a bit better.


  • Site for Autism foundation not finished yet.
  • I'm a complete fool. Had a good, nice, layout and gave it away when someone said it would fit their site. So now I'm designing something completely different. I want to use something which is already designed, but I still want to give it my own look and features.
  • Wanted to try something out... yea.. server maintenance. Just 4 days to go. Ugh!
  • My ADHD son smokes. I hate it!!
  • He threw the left overs of his sigarettes in the garden. That made me soooo mad.
    He had to clean it up all by himself, so I assume he'll think when he wants to do it again.
  • They still haven't caught the masked man.
  • My left foot is still swollen.


Well, that's it for this week.
When you want to participate, just let me know.

Have a nice weekend!
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Thursday, March 25, 2010

education of professionals

Isn't it interesting that we, parents, even when we're university educated, learn everyday about the autism of our children, and that all those who are called professionals have to do with less than a lifetime of education and call themselves educated on the subject?

Today my eyes caught an announcement of a course for lawyers.
It was found out that there was a huge need for knowledge about psychiatric diseases which are mentioned in the DSM IV (which is the Diagnostic and statistic manual of psychiatric disorders, fourth edition. There's also a revises one, and DSM V is in the process of beign prepared).

I'm always happy when others are interested to learn how to deal with people with a psychiatric disorder, so I went to the site which was mentioned and expected at least a 14 day course, with all sorts of subjects and speakers.

Wrong!!

Half a day...that's all.
Half a day.....

It's not even long enough to teach people how to observe well.

I know... I tried...
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Wednesday, March 24, 2010

He wants to call me?

Some people are not aware that they make the impression that they're playing a game.

I mailed someone about an issue, and didn't get a reply.
As I didn't expect one I took the message had come across and live went on.

A few days ago the guy called the father of my children and asked for my number and got it.

That afternoon I took my phone with me while I was doing chores, because I expected a call from one of my sons.
My son called, but the guy not.

He mailed me to call him at a certain time, but I read that mail late at night.

So I politely mailed him to tell him I got the mail too late and said he could call me after 18.00 hours.

Again I dragged the phone with me.
Nothing happened.

Oh...I found a mail after midnight to call him at 19.00 hours.

Hmmm... gives me the idea the guy doesn't want to spend any money and leaves that to me.
But, as he took the initiative to get in contact, it's up to him to get in contact.

I'm rather old-fashioned in that.

Especially as we have to turn every penny at the moment.

Well... and I hate the phone.

I'm curious though about what he has to say.
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Tuesday, March 23, 2010

surprise, surprise! At the dentist

Never ever assume that your upbringing didn't mean one little thing, because at the strangest moments you'll be confronted with what you've put in.

The last year my autistic son had the habit of agreeing with appointments. He even went in the shower and had me get his clothes ready.
But right before we had to leave he refuses to go and stayed at home.
He's 17, and twice my size in width. So no way I'm able to move him when he doesn't want to go.

Yesterday I just did my things, and he went through all the moves of leaving for the dentist. He even brushed his teeth, which is rare.

I expected him to refuse to go, but he went with me without any problem.
After 7 years he sat down in the chair and opened his mouth.
We both expected a graveyard.. he didn't have one single spot that needed repair.
"Good saliva", the dentist said.
Yea....

I was still amazed that he behaved so well when I was in the chair myself.

Each three years photos are made, so this was the time.
I didn't expect any problems, and I already had the go ahead when the photos showed a leaking crown.

The crown is in there about a year!

Well, that's a new appointment for me and no for my autistic son. Surprise, surprise!!
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Monday, March 22, 2010

Manic Monday #204

What do you value most in other people?

It depends on the situation, but honesty, caring for others, humor.

If you could only see black and white except for one color, what color would you choose to see?

I've been through pop-art with black white and red.
Maybe this time.... blue?

You have a 10 minute speech to give at a high school, what is it about?

Not even at my own one?

Well... if it's another one I probably would speech about autism, the uniqueness of each individual being.


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Please don´t direct link, as it slows down my site. I´ll change the link regularly so you´re left with an empty space or a red warning sign.
Please credit properly.
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Sunday, March 21, 2010

first sunday of spring

It's officially spring now.
This morning the birds were giving a nice concert.
They were rather far away, but could be heard.

Last evening and the night were a different story.
We had loads of rain. Were in the centre of a bad rain-area.
It poured so very hard, that one of my daughters got literally soaking wet just from bus to house. It was horror.
I had to stay up part of the night to get the rain off the plastic roof above the area between kitchen door and shed. Under normal conditions the rain just rolls off, but it came down so fast that the liters created large dents that files with liters and liters. So I had to go outside to push the water out.

When the rain got less and I saw on the radar that the worst was over I just crashed in my bed.

The day, yesterday, was awful.
My autistic son kept complaining every 3 minutes that he had nothing to do (hmm, he was complaining so he was doing something. LOL!). He wanted to force us to buy a few new games for him, but we're broke.
It really got to my nerves.

Finally his father took his laptop, went to the site of the bank and showed him.
At the same time gave him a bag of chips.
How about mixed messages? LOL!
Neither of them realised it, and for a short time it was silent.
Pfff.

I need to get the autism site ready but because I'm so stressed and tired I just can't get it designed the way I want.
Saw precisely the design that's needed on a site, but it costs 32 dollars.
It's well worth the money.
The design is a portal which contains different areas which give an easy oversight.
The different sections represent the different areas of our organisation (all volunteers), there's enough place for links and there's a blog.
So in case you want to sponsor..... Your donation will be appreciated all over the world and the link to your site will be eternal as long as the autism site is on air.
Free hosting is already arranged. So that's no worry.

Tomorrow morning: dentist.
Just my autistic son and I.
Meaning I'll have to wait if he's going.
The last year he has the habit to agree with many things and cancel at the last moment.
I don't mind going alone, but I do mind that his teeth hardly see a brush let alone a dentist.

There's more light outside. Time to get the laundry on the line.
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Saturday, March 20, 2010

Just One Look

saturday91. How vein are you about how you look?

Do you mean vain?

I'm not vain.
But I want to look clean.
No need for rags and such. I always wash my hair when I go out and put on clean clothes.
I'm a bit artistic in my choice... so beware!!

2. When you were little what was your favorite TV show?

Had that question a few weeks ago.
Swiebertje.

3. If someone was going to make a movie or TV show about your life, who would play you and why?

Had that question too and I've forgotten the answer.

Lucinda Walsh/Elizabeth Hubbard can play how I am now.

4. Who is your favorite Major League Baseball team? How about your favorite player?

We don't have that sport here. So I don't know.

5. What is your favorite baseball-related movie?

I have none.

6. What is one lesson you have learned in the past year?

That I'm very firm and straightforward with my need and intention to change the world. Think I'm finally going through puberty, and I love it. LOL!

I also learned that the psychiatrist of 2 of my sons is just like the rest there: lots of talk, nice smile and no therapy for my son.
When I go there now it's all theatre and play for me. Ugh!!

7. Tell us about one of your childhood memories.

Good or bad one?

I remember I always loved the birds in spring.

8. How do you handle sticky situations? Do you have a method? If so, what is it?

Several.
  • Humor. But I'm careful not to offend anyone and make the situation worse.
  • Tactically divert the attention.
  • Step back and overlook the situation, see if there's a way out or a solution to the problem no one invented yet.
  • Become a calm leader, summarise the situation and tell everyone that the problems will be solved when all are calm.


9. Do you think people talk about you behind your back?

Yes. They do.

Often people have the wrong impression of me. Which I don't mind as long as they don't think I'm oversized because I eat too much.

I like the fact that I stick in their minds, because I want them to be remembered about what I've said about autism.

I also think they talk about me, because I'm a mom of 6 with 4 autistic sons. I know what I'm talking about and many problems I face I've faced before, but are new to them. Some people hate it when I have a solution to a problem straightaway.
Working with parents of autistic children has given me a wealth of information to use.

Want to take part too?
Click the logo.





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There's also a header and a square of 125x125 available.
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Friday, March 19, 2010

Grinding with Laane


There are days I long to sit at my grandma's table and grind coffee with her.
The strong smell of coffee, the sweet light through the window and the soft smile on her face.

Wouldn't it be a great introduction for a meme?

Well, you're allowed to consider this as much.
When you want to take part, let me know and I'll send you the graphic, with your own name.

Grind away what happened this week so you can start your weekend a bit better.


  • Still no renewed concept diagnosis for my third son. The psychiatrist is on vacation. (...)
  • My autistic son saved for a game. He ordered it. Some stupid mailworker made a mistake and it never arrived but was send back. Oh, all those hours of listening to his moaning about the mail, his meltdowns because he was up too early and far too expectant.
  • Filed a complaint at TNT who told me to ask the sender to start an investigation from England. I asked the guy for a scan of the package and it arrived so clear that I could read everything on it. The mistake is made here in The Netherlands, and they should solve it.
    It's just a 6 english pound refund.
  • Opened a bottle of deodorant this morning and there was no applicationtop on it. That was new to me.
  • Had a parents evening this week. Turned out both mentors don't hold the truth as very valuable. They're not investing the energy in our children. All those kids deserve better.
  • As a result I've decided not to wait for action of the very kind (read too kind) contactperson. A few questions were raised and I'm researching them. Mailed a few people and I'm waiting for the answers.
  • Got a more than 750 euro bill to pay before the 24th. Otherwise it will be an interest loaded loan.
    The money needs to be repayed because my son stopped with his studies. Not because he wanted to stop, but because they won't allow students to continue who don't have a job. But shop-owners are not hiring people in this time of recession.
    And we don't have the money...
    So certainly no vacation this year.
  • Yesterday it was beautiful weather. So now it's allergy season. I have to wait a complete day until I can fetch my meds at the pharmacy.
  • I was too tired yesterday evening to drop Ec's at more than a few sites. Sorry.
  • Finally we'd found a very nice and good podotherapist for my autistic son and this week he told me that he'll leave the practice.
  • My left foot was swollen almost all week.
  • Just heard that one of my favorite writers (when I was young) has died. Margreet van Hoorn.

Well, that's it for this week.
When you want to participate, just let me know.

Have a nice weekend!
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Thursday, March 18, 2010

It's spring!!!

Spring arrived!

Last week I heard the different sounds in the air, some birds were flying at twilight, a tweet here and there in the morning.

Today the temperature was so good that I could walk outside in a T-shirt.
The laundry was almost dry after hanging outside the whole afternoon.

I saw the first signs of leaves, the promisses of flowers.

Ohhh... I'm so glad it's spring!!
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Wednesday, March 17, 2010

Parent's meeting: a disaster!

Happy St. Patrick's Day.


Today the ashes of my brother in law were returned to nature. A bit where he was born, a bit where he lives most of his life and the remainder in a fancy container at the grave of his parents.

Tonight we had a parent's evening at the school of the girls.

Because we needed an extra busticket the father of the children went a few minutes earlier.
When I arrived at the busstation it turned out that one of our sons had called. He needed the bicycle his father had taken with him om the train to be able to go from one place to another with the ashes.
So, against all plans, I went on the bus alone.

I didn't mind.
In fact I was happy not to have to pay attention to anyone.
When I was near school it turned out we were both in time.

We went upstairs and greeted both mentor and mentrix.
None of them asked how one of my daughters was.
It's like they don't care at all.

My daugher is dyslectic and couldn't cope with the enormous amount of homework.
She got almost overworked, so I cancelled all homework for a couple of days and now allow her to make homework just for a short time.

They said they were not ready preparing the evening and left us there alone.

The evening was a disaster.

My girls had the bad luck of being in the worst group of school, so the parents pulled together and made a plan.
The mentor said he'd called all parents of the bullies.
But my girls didn't see any difference in behaviour and we had a strong feeling that nothing had happened.

One of the parents asked if things were better now.
He said "yes" and that the results were better too.
But a few parents frowned their eyebrows and I was one of them.

I said that the bullying was still going on, and so did someone else.
Which raised the question if they sticked to the plan.

Oh, yes!

A parent asked what worked best, and the mentor started to beat about the bush. It was disgusting to see.

Other parents started to ask vague questions, which he took to escape from the situation.

Then I asked for some concrete examples of which actions were taken and the results.

Like during earlier meetings he couldn't answer and then they started to complain about being busy.

About the same happened when someone asked if he had a good insight in the results of the pupils and if he could tell us how much under the average level the group was working.
No answer possible.
After pressure he said he could say something about his own subject.
But we wanted to know about all the subjects.

Turned out he had no clue at all.
They were not using any system to follow the results of the children but the card the kids have. Well, not all are able to be completely honest about their results.

Over and over the same happened, until they felt attacked.
The contactperson between school and parents waved it all away.
Well, let's say he keeps that behaviour going.

On my way home I saw the bus coming and started to run as good as possible.
It must have been an odd sight, because I can hardly run at the moment.
My left foot is very swollen and I'm not a very athletic person anymore.

To my surprise the driver waited.

I've thanked him 5 times. LOL!

At the central busstation it was dark and it didn't feel good.
So I took the first bus which ended at our station.
I've seen a large part of town..LOL!

Well, tomorrow I'm going the schoolinpector what they have as legal requirements to follow pupils.

First I have to get some sleep.
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Tuesday, March 16, 2010

So that's no vacation, even though we had good plans.

Yesterday we got two bills.
One for the use of a public transport card, and one for the repayment of a grant for school.

A large amount of money.

And....to be paid before the 24th, otherwise it'll be automatically an interest loaded loan.

Huh?

My third son, with ADHD and something else (either PDD-NOS or schizoid characteristics), went to school to study to become a shopowner.
No problem with that, until he landed at the wrong place for his practical work. The wrong place, because the guy who had to support him, teach him, be kind to him, be his tutor, turned out to be a lazy, unkind, authority figure, who didn't want to spend one minute with my son.
After trying too long, we went with him to school, had a good talk and they agreed a new place should be found.
But recession kicked in, shops didn't want to invest in new blood, and because he couldn't find a place anywhere, he had to stop his studies.

Consequence: these bills.
Because you'll get the money when you finish your studies and have to repay them when you don't.

And as he doesn't have an income, we have to repay it.

We can't. So we'll have a loan for the first time in our lives, and not even by our own decision, but by rules that break people's futures.

I didn't even know they would turn a gift into an interest loaded loan in 9 days after presenting the bill, and I doubt whether the government or the national ombudsman knows.

I can cry, because again we won't be able to have even a little piece of holiday outside the house.
We wanted to rent a house near the beach, with internet.
Mainly so the girls and I would get some fresh air and we would be able to enjoy ourselves with something we're not used to, right at the doorstep.
The internetconnection would be for the sons. They don't care for the sea, but we thought that maybe they would enjoy a vacation too. And in case they wouldn't their father could take them straight home and I could stay with the girls.

Nice plans.

The girls have never been on vacation, and I haven't been for 25 years, but all plans can be put in the shredder.

My autistic son saw the bills and got a meltdown.
His birthday is in june and he considered that close enough not to get a birthday present.
All he wants is games, games, games, the expensive ones too, so you can imagine the grandeur of his meltdown.

After his wonderful - not! - mood of this weekend that was all I was waiting for. Tsss.

It's time to find a semi steady bit of extra income. Wish google would put my rank back. Any advice?



autism
A series of posts
about lack of knowledge,
lack of concensus between disciplines
and the need for a formal diagnosis
with a psychiatric label
to get support for a unique individual
with autism.


.
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Monday, March 15, 2010

Manic Monday #203

How did you decide to live where you do?

I've been born in this town, and we both studied here.
We lived in a student apartment and when we married we wanted something better.
So we moved to an apartment building.
When we got children we needed a house and we had no other choice than to move to this area.
This was the house with the better garden.

Do you like risks, or do you avoid them? What major risks have you taken in your life?

Im more of a person of calculated risks.

The major risks were marrying and getting pregnant.
The marriage didn't work out as he turned out to be autistic, and of the pregnancies two resulted in babies which died.

If you had to choose, which could you live without: TV, the internet, a telephone or friends?

I can live without telephone. In fact I hate the telephone.
TV can be seen on the computer too.
I live without real life friends,
but I can't miss my internet friends... so there's your answer.


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Please credit properly.
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Sunday, March 14, 2010

autism in our family

Each day I arrive at my blog it bugs me that my page rank isn't back to what it was.
So I'll make a few changes (less tags, removing old posts, updating old posts) until my attention is needed elsewhere.

And I'm on the wanted list here in the house.

I thought small children needed attention of their mom, and it wasn't a problem at all.
I liked to teach them all about life and other people, even when I discovered they needed far much more energy than other children.

Now they're older they don't want my teachings anymore but at the same time need my intervention more than ever.

The real autism problems need to be adressed every day, over and over again. It doesn't feel there's a learning process going on anymore, but I'm problem solving. The same problems over and over again.

Yesterday my autistic son had a rotten mood all day.
Ofcourse I have my own tricks to divert his attention, make him forget himself, and feel better. But yesterday he kept repeating his own thoughts in his own mind, acting out all afternoon, and my only solution was slipping some sleeping medication in his drink.
Alas, he drank only water he took himself, but he fell asleep, all by himself too.
He had tired himself by his behaviour so much, that he couldn't stay awake.
Thank you nature for helping me out. LOL!

When he's in a mood like that he tries to get a grip on life by falling back on routine and a stable environment.
That would be easy when he would be only child, but he's got siblings all over the place.

Yesterday only his sisters were at home.
Without us knowing he had made plans for them.
Each of them had to sit with him on his room for hours.
Imagine...teenage girls of 14, sitting there, creating lost time.
One of them doesn't mind sitting with him when she's able to make her homework, but he doesn't allow that.
The other wants him to play certain computergames, but yesterday he didn't want to do so.

Then a few friends of the girls rang the doorbell and I heard them giggling and having girly fun. Within a moment one of the girls was away with them, and you won't hear me object.

But I think you've heard him yelling and protesting.
I'm sure her friends heard it outside too.

The way he tries to influence their lifes is going against all my feelings.
I have to be aware of what he says all the time, to tell him at the right moments he's not their father, I've asked them to do something for me, he should leave them alone so they can make their homework, etc etc.

His urge to control his environment is so big, that he's limiting our joy.
Add his constant complaints and you'll get a feel of our daily life.

Yesterday was one of those days he makes it easy for us to take the step to make him live somewhere else.
Just a few more months to go and then he's 18.
That means that we're able to change to another psychiatrist and that he can use facilities which are more near home.
I think it'll be a relief for all of us when he'll leave home to live elsewhere.
It has become almost impossible to live with him on a day to day basis.
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Saturday, March 13, 2010

Blogging for autism awareness and funds

OK. I'm very early this year to ask your attention for autism awareness month,
but I'm already busy with the preparations.

We'll launch a new site in two languages: english and dutch.

It'll contain trustworthy information about scientific research, bookreviews, news, personal accounts, critical columns and ofcourse tips and other information.
It'll grow in time. so we're making a site which is not static.

In the meantime we're dealing with the regular activities, which won't stop ofcourse.

During autism awareness month we'll be raising funds.

Depending on the amount of money we're able to collect this year it'll go to an autism foundation, or will be spend to enable autistic young people to participate in activities which they won't otherwise be able to attend or to do.

At the moment we have a request for a good photocamera for a young person who needs it for his studies photography and to make a living.

Ofcourse I dream big.

My dream is to buy a house where special facilities will be brought together.
  1. Information,
    • special hours where people can walk in to ask their questions
    • a library
    • groups to educate families
    • someone who educates schools and gives individual advice to teachers and schools
  2. Consultation and therapy
    • a psychiatrist for medication control near the home
    • speech therapist
    • psychologist for parenting advice
    • groups
  3. Living facilities
    • training home, where young people can experience in a light protected environment how independent they really are
    • a home for a group of autistic young people
  4. Familie support
    • dayactivities for siblings, so they can have some relaxation
    • support groups for siblings
    • advisory service for them how to deal with their autistic brother or sister.
Last year we started with the advisory service for siblings, because nothing on the subject was available in the country.
We started small scale, and it turned out a much needed and used service.

All our volunteers work pro deo.
They receive nothing, not even travelcost compensation.

I know that's quite a large project but without ideas and dreams to work towards to, life is boring.

There are so many things needed for autistic young people and their families.
Small and large things.

When you want to contribute, please let me know.

I have plenty of place on my site for ads, I can review your site, and I can even use my psychologist skills to answer your questions about parenting, for instance.


When you want to twitter this around... go ahead!

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Friday, March 12, 2010

Grinding with Laane


There are days I long to sit at my grandma's table and grind coffee with her.
The strong smell of coffee, the sweet light through the window and the soft smile on her face.

Wouldn't it be a great introduction for a meme?

Well, you're allowed to consider this as much.
When you want to take part, let me know and I'll send you the graphic, with your own name.

Grind away what happened this week so you can start your weekend a bit better.

  • The psychiatrist of my third son promissed the concept of the diagnosis on the doormat. It didn't arrive.
  • He also promissed to refer my classiic autistic son to the right people to attack his weight problems. Nothing happened.
  • He told me that he was going on a vacation next week. Tell me. I haven't been away in 25 years. At least he could admit my son to hospital and give me his holiday house in the meantime. LOL!
  • I wonder if I'll have a proper pension when I'm old.
  • I forgot to motivate someone to mention me for the national autism award. Guess it's too late now.
  • Couldn't get my computer online today. Until now.
  • Just a few days ago we found a huge pile of bills on the doormat of my MIL and BIL who dies in the summer of last year. It was soon after we thought we'd finished the complete administration. Will it ever stop?
  • There's far too much to do. Need to make the autism site before april, get some articles written, and a lot more. No reply yet from above to lengthen the days to over 24 hours.
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A place to live - the day after

a place to liveYesterday, during the meeting, the person who took so much time to get my son's admission to the school reality asked if we should have meetings always with so many people.
She was referring to the fact that both parents were present.

I said "no".
My son's social worker will settle matters with her.

Thought that was clear.

But like before she either forgets what she hears or draws her own conclusions, which can be opposite to what is said.

She called me.

Right when I was busy with something else.

I didn't want to bring a new issue in the conversation with her, knowing it would raise discussion or excuses which are not meant anyway.

She said she would call back next monday.
I said "yes" just to end the call, before she would start explaining why she called.

I know it's not nice.

This evening I'll mail my social worker that she called and that I referred the woman to her, as was agreed suring the meeting.

And I'll mail the woman to tell her that we want to stick to the agreement of yesterday.

I feel I need a good springcleaning, and I've learned it's good to move people who bring the worst of me out in the first place.

This woman needs to be a horror of the past, not of the present.
Sorry.
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Thursday, March 11, 2010

A place to live - evaluation

a place to liveToday we had a meeting to evaluate what happened between now and the time my third son applied for a place at a school for individual education. (He wants to become a photographer)

The agenda was made without thinking, putting the evaluation first and the plans that needed to besigned last.
So I suggested to take care of matters for the future first.

It took almost an hour to speak about the paperwork. She forgot the financial consequences, special courses and some other important issues.
Like buying photographic equipment. He can barely live on the money he has. He still needs a lot from us.

By the time we were ready it was clear that my son's new social worker (who comes with the protected living) is as driven as I am.
It was so good to see her make clear that certain decisions are between her and my son.

The woman who made a lot of mistakes during a full year before my son was admitted to the school, tried to forget the evaluation.

We just acted like we didn't realise this, but ofcourse when she wanted to speak the final words I stepped in.

So I said in a few words that she'd created a terrible time, and especially a waste of a complete year.

Ofcourse she "didn't understand", and I saw at her face that she thought she'd made a nice escape by saying that she couldn't remember doing something wrong.

I mentioned the main events.
Like having a perfect file with perfect content, and still wanting to redo everything in it.
Like wanting to assess motivation taking autistic problems as the measurement. Like telling someone without legs that he can show his motivation by walking to the end of the street.

The basic problem was that she claimed to know about autism, but that she probably knew the word, but not what is required to facilitate education.

Etc etc.

Well, we were glad to leave.
She didn't give a reaction with content.
But the psychologist who was present at the meeting showed enough in her face to make clear that what I said was recognised and that my criticism will be followed up properly.

It felt good that there's no need to ever deal with this woman again.

Going home we managed to get some groceries and find a new doormat for only 2 euros.
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Wednesday, March 10, 2010

We had an inheritance? Only bills!! And more of them.

A day before we have to get the ashes of my brother in law (who died a few weeks after his mother died), we're hearing a huge poof sound on the doormat.

It's a huge envelope with a pile of paperwork.

Last week we thought we were ready with it all, and closed the financial administration with filling in the tax forms.
First time in years we had them ready weeks before the closing date.

And now all the work is undone with one envelope with...bills...and bills...and more of them.
Some are from september 2009!!

One of us has been in town, speaking with the home owner at the beginning of february. He ownes both homes, so he could have given us the last mail. He was sked for it.
He had his bill ready...so why not this pile?

I feel a bit guilty as I urged the father of the children to take care of a good funeral for his brother instead of leaving it to the council, as the family planned.
We knew it also meant taking care of the financial burden.
It was good that at that time we didn't know what was coming to us, otherwise we wouldn't have taken the job on our shoulders.

Now his brother had a nice funeral.

And we've done a lot of work... and are still not ready.

The amount of money these bills need exceeds the inheritance of a few hundred euros.
So the taxes won't get nothing...which is a smile after all.

But me oh my, how do we handle this excess lot of bills?

I'm glad that yesterday my daughters and I fell for a nice bag and decided to buy it.
It feels like a pillow in my back now, something colourfull between the black letters on the gaping white papers.

One of them tell us to pay in two days. Dated september.
If not paid they'll come over to get possessions to sell them to get the money.
Well, the house is completely empty, unless there are new people.
And the possessions of my bil had to be thrown away. Everything!
Because of what happened nothing could be re-used.

Will they come here?

No way they're going to get our belongings to pay bills over things that we have reported to be ended when he died.
No way they'll get inside my house to take our stuff to pay bills we didn't know excisted.

Over my dead body!
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Tuesday, March 9, 2010

The continuing story - waiting for mail

He ordered something online.
It took him days to decide, but finally his own moaning about being bored won the race with his indecision.

He agreed on a payment program with his dad, with the intention never to pay him back, so we're expecting quite some evening spoiled on debating money issues.

Then the waiting started.

It would have been great if it had been a time of leaning backwards on the couch, with dropped eyelids, leaving just enough space to see some movement on the gardenpath.
Waiting can be such a relaxing state of mind.

He changed his complete life though.
His routine of bedtime behaviour was moved forward so he would wake up in time to wait for the mailman.

Often he woke up in the middle of the night, expecting to see it was day already. But instead all was dark and none was available for a quick vent.
His walking around in the house, speaking to himself, arousing his temper and then closing the door with a loud bang, woke everybody up. But alas, none of those white faces wanted to deal with him, except mine.
A mother's job is never done.

Each day he would sit on the couch at 9 in the morning.
In case the mailman had changed his routine, or another mailman might come early, or the mailservice might have changed sorting the mail from night to the evening before, so the mail would be early.

It never was.

After two weeks of waiting he told us that the game he ordered would be send on the evening before the official release, so that would have been yesterday evening.
I asked him why he waited so many days before.
"In case they would have decided to send it earlier."

He asked his father to check the tracking service yesterday evening, and had a meltdown because his game was not yet processed.
Can you imagine why my nice friendly mask changed into a stiff dark one with wrinkled eyebrows? One simple look at it made him leave the room. Phew!

This morning he was there again: on the couch. At 9.

Tuesday is the day of the leaflets, the free papers, 4 mailmen delivering mainly junk and bills and at least 4 mailcards driving around, never stopping for a delivery.

At 14.00 hours he left the room, mainly because he talked his ill sister into sleeping at his brother's bed, while he played an old game.

My coffee suddenly tasted a lot better now the statue was removed from my room.
Finally I was free to think without being disturbed by his complaints about the mailservices nowadays, (he's 18 not 80!), and his neverending sighs, and more complaints.

Suddenly the clocks could be heard again, the birds outside.
I could see a faint haze of sun on the branches in the garden, lighting up the last snow.

I tidied the room, now there was finally no chance to fall over two long legs with tremendous feet attached to them.

And then the bell rang.
The black scanner went over the package and then it landed swiftly in my hands.
I hardly noticed, because I was smiling back to the first person of real life society that entered my world in days.

His game has finally arrived.
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Monday, March 8, 2010

International Women's Day

Isn't it great it's International Women's Day?

Clara Zetkin called for the first Women's Day in 1910 at an international women comference in Copenhagen.

So we're celebrating the 100th International Women's Day.

Since then we managed to get the right to vote, are the working rights written, and are we emancipated at many issues.

But I don't think we've come as far as we should have come.

In The USA, The Netherlands and thirld world countries women still earn far less than men.

In the first two countries each an average of 23%.

Yes, it's true.
We earn less for the same job and the same skills and diplomas.

And we are the main group in:
- fugitives (75%)
- the poor (75%)
- analfabetics (66%)

So there's still a lot to do for better life circumstances for women.

And who stand up for us?

Are the emancipationorganisations the ones creating a better world for us?

They wanted men and women to be alike.
We've been able to live past the same clothing for both sexes, but we're still pushed to be like men in business.

Of all the work in the world, both at home and elsewhere, 66% is done by one gender.
Not men... women.
How come that women earn 23% less in countries like mine?

Because women are not the ones who make decisions.
Just 5% of all worldleaders are women.
Women earn less than 1% of all possessions.

And I truly think that emanicpationorganisations are not helping us at all.

They're working against us.

Because they've strived so much to make women work at the same positions as men, and to create job opportunities, they've forgotten to ask one simple question?

Will our lives be better?

It's not about what women do best.
It's not about answering to your talents.

But it's about being like a man.


I don't want to be a man, but I want to be me.

I want to be valued for who I am and for what I do best.
That's emancipation for me, that's true feminism.

I don´t want the free choice to get a job, but I want the free choice between being a good mother, having a job, or combining both at my free choice.

And there´s no free choice.

Many women in the world need to leave motherhood to pay for a mortgage, nice clothing, the studies of their children, a car, food for their family, etc etc.

We don´t have a free choice.

The consequence of all those emancipation efforts is that motherhood is underrated.

Whatever mothers do, we won´t get paid at all.

We don´t get a pension, even though we give out all± our health, our emotions, our wellbeing and our time on this earth.

It seems motherhood is a kind of non-existence, even though we have all the responsibility for true life and for the future of humanity.

In my country when women receive social benefits they have to apply for a paid job, otherwise they'll receive less money.

But at the same moment they're adressed when her children do something wrong.
Society makes her responsible, but doesn't take it's responsibility to make her do her job as a mother well.

We don't have safetly regulations for mothers,
no decent hours or shifts.
When we're ill, we have to go on. The work can't wait, there's no one to replace us.

When we have more children, handicapped children or are dealing with difficult circumstances, no one values us more.

It was down to us women to enable men to do their job better. Who cared?
When he left the job, he got the golden watch, we the flowers and when we were not available because we had to watch our children, we got nothing at all.
And modern wives? They run and run, juggle with their time and get nothing extra.

I feel women are not getting the respect they deserve.

They should be paid the same for the same job, skills and diplomas.
Mothers should get a good income.

Mothers who care for handicapped children should be paid the amount it costs when their children would be in a care home.
We're giving up our own fututre for the benefit of society.

It's time we get proper rights.
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Sunday, March 7, 2010

Updating the site

I'm already preparing my site for april: autism awareness months.
I know, it's far too early, but when my computer crashed (thanks to an EC site) I also lost my favorite programs, including paint shop pro 9.

I don't have the money to renew, and the trialversion will be gone monday or tuesday.

So whatever graphic work I need to do needs to be done by then. :(

A few years ago I blogged smallpipes together and those posts were still at my blog.
Well, the exposure for a few dollars each has been long enough and I've deleted more than 100 posts with links.

Maybe google will take up my rank again.

Please,please Google, do!!
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Saturday, March 6, 2010

Your Smiling Face

1. No matter what's going on in your life, what always makes you smile?

Babies

2. What's the biggest lie you've ever told?

Hmm...that we're having a happy marriage.

3. Do you hold a grudge?

Not really. I live each day for the first time, as much as possible.
But now I'm getting older it can take a few days when I feel someone should have known better.
Making mistakes is human, but making the same mistake over and over again makes clear that a person doesn't want to learn. Especially when respect for other people is concerned it gets to me.

4. What is the worst job you've ever had?

Well, I've tried to enjoy every job.
Even my worst job was kind of nice.
I worked at a large machine, about 30 years ago.
It pushed letters in iron plates which were used to print.
The machine had a keyboard where each letter was represented with a fist-size button. It needed heavy force to push it.
More of a man's job, maybe.
Took me a lot of aspirin each day to get my job done.

5. What would be your dream job?

Photographer in Scotland,
worldwide travelreporter,
teacher or doctor in Africa,
choreographer,
singer in a band (I've enjoyed that sooo much)

6. What is the happiest event you've experienced?

Birth of my first child. I didn't realise then that babies also could die in my life.

7. What is the saddest thing you've experienced?

The death of my second baby.
Washing her clothes in the night after she died, because I didn't want someone else to do so. My socalled husband asleep, the world asleep.

8. Do you tend to exaggerate or underestimate?

I often underestimate how mean and uncaring some people can be.
I don't often exaggerate, unless it's for a very very good cause. I'm a very bad lyer, so it doesn't happen often.

9. List the cars that you have owned. Give us just a few words about each one.

I have never owned a car.

I had a cartoy when I was 3. Got it with the groceries. When my nephew entered the room I was ordered to give it to him. He played with my dolls too, but I wasn't allowed to play with the car anymore.
I think it was my first lesson in keeping my mouth shut in front of grown-ups. I also think it laid the foundation for the feeling that life takes more than it gives.
I've been a rather silent child ever since, my gram told me.

I smile, I see, I give and people take.
But the last years I've changed. I smile, I see, people take, and I yell as hard as I can to tell them that their act is injustice.



Want to take part too?
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Friday, March 5, 2010

Grinding with Laane


There are days I long to sit at my grandma's table and grind coffee with her.
The strong smell of coffee, the sweet light through the window and the soft smile on her face.

Wouldn't it be a great introduction for a meme?

Well, you're allowed to consider this as much.
When you want to take part, let me know and I'll send you the graphic, with your own name.

Grind away what happened this week so you can start your weekend a bit better.

  • With the Olympics in the past we have a great time to look back on.
    What's left are sleeping problems, because the Olympics were at a completely opposite timezone. But we'll get over them.

  • At the school of the girls the problems with bullying are still not handled well. Next week: parent's meeting.
    Didn't receive one little bit of reply to my mail about one of the girls being confronted with so much homework that her health started to suffer.

  • Paperwork!!! Again forms and forms.

  • Wrong diagnosis third son. Haven't received the concept of the renewed diagnosis yet.
    Psia said no autism diagnosis could be given at that age anymore. Ridiculous! So that means more work to verify that and get it changed.

  • They're rather silent working on merching the autism spectrum disorders with the schizofrenic disorders, only because they've found 2 genes the same by both disorders.
    This is completely against all scientific knowledge about gene-expression and certainly against all what has been fought for the past years.
    I'm soooo mad about this, because it won't be an improvement for the care of our children and will only mean more medical intervention instead of support for daily life.
    Problem is that the professor involved in this is also part of many volunteer and other autism organisations.

  • I need more time in a week!

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Thursday, March 4, 2010

The Netherlands now an ultra right country? No. Are you nuts?

The results of the elections got the attention of the international media and immediately they got carried away with articles like "Wilders wins Dutch elections" and so on.

Well, lets'be clear.

He didn't win the elections and he couldn't win the elections at all, because he just participated with his party in two towns.

His party became second in one and first in another.
The main reason his party was voted on there was that people don't want to see young people with another skincolour on the streets. It's said that those young people cause lots of trouble, and Wilders wants commando's on the streets..with guns.
This is just fiction, because guns are only allowed to be part of the daily uniform of police and soldiers in action.

With that we've struck the core of the problem right at the spot.
Many things that political party wants can't be realised because it's either against the law, or against the rules and regulations.
As soon as people see that there is a lot of shouting but nothing more they'll start to moan and won't vote on that party anymore.

But, like in the thirties, people are confronted with money problems, and that makes people intolerant. When they think others have more or are coping better they start blaming them and they want them out.
People like Wilders feed those emotions. Which leads to discrimination.

In fact these elections haven't been a real surprise.
Like always the parties that are in the government lose votes. And most of the times one of the medium parties goes a bit down too. Most often it's the one that gained a lot during a former election.
That's precisely what happened.

Those who are in the opposition gain.
Which happened in this case too.

This time, even though these were local elections, the national situation had a large influence.
The government recently fell, and in june the national elections will be held.

The only thing I'm worried about is that the time in between is too short for the party of Wilders to show they can't realise their promisses.

Wilders dreams of becoming the largest party.
Because of the recession he might get quite some votes because many people might be influenced by his shouted promisses.
They're not realising yet, that he also shouts that he's not going to pay for those who are poor because they can't make a life for themselves. That does mean he will lower social benefits and such.
He will mow the grass he has sown right to the ground.

The largest parties are still the usual ones, with a few local shifts from one party to another.

So we're not an ultra right country. No!
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Wednesday, March 3, 2010

After the Olympics and the first crocus

Life is returning back to normal now the olympics are over.
Ofcourse we watched the ceremonies to thank the athletes, but that event was at a normal time during the day.

Appointments started again.

I will write about mine at another time, because I need to think about the implications of what I heard for the future of my autism activities.
It will mean an intensification and I probably need more volunteers, especially people with a scientific background who are able to do literature review at high standards.
So I'll be back about that.

When we left this morning it was freezing, and there was such a thick wall of fog, that I couldn't see the water in the lake we passed. Spooky.

When we came back it was sunny, 10 degrees warmer, and I saw the first crocus!!!!!!!!

Me oh my... even though we're heading towards more freezing nights, spring is slowly taking the edges of winter away.

Am I happy about that!!
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Tuesday, March 2, 2010

Update and my thoughts about schizoid-autism



Yesterday I had a hell of a migraine.
That I'd been caught up in the Olympics and was very tired didn't help.

Well, I took a slow day, dealt with the comments of the gentleman of the house (does he knows the requirements of being a gentleman???), and went to bed earlier.

Took a sleep in today instead of walking through the house at 5.30, and I'm feeling better now.

I need to get in a normal daily routine asap because important meetings are scheduled.

The first one is tomorrow with the psychiatrist of my third son, the son who got a wrong diagnosis.

I've been observing him even better than before and I've seen nothing that makes him deserve the label: schizoid.
Not even as a prognosis.

When I objected against the wrong diagnosis I threw all my data and stuff on the table, because I knew my diagnosis was right.
But I'm considered first the mom and then the professional, so it's mom against the autism expert.

Well, living day to day with someone sure gives a better insight than seeing someone 4 to 5 times a year for 10 minutes, and a diagnostic procedure that takes a few hours, mainly of filling in questionnaires,ànd with someone else.

We sure have things to talk about tomorrow.

The guy is all smiles and fun, but I'm not all too happy with the fact that I had to tell my son the diagnosis and had to discuss the proposal to take medication on top what he has for ADHD.

Ofcourse I was as unethical to tell him that I am completely against medication indicated by a diagnosis someone can't agree with.

In an emailconversation the psychiatrist wrote that we phenomenological agreed.
That's a very interesting remark.

Because it means we've observed the same. (Phenomenological means: seeing reality as it presents, without explanation).

Isn't assessment about taking notion of what's really there?

I've put the observationa aginst his diagnosis and against mine.
And the definition and observable data fitted my diagnosis better.
No one can dispute that.

So why on earth stick to a diagnosis that doesn't fit the book and sure doesn't fit reality?

Is it ego?
I'll be kind to him.

Maybe the main question tomorrow should be:
"What point to you want to make by disagreeing?"

With my diagnosis he will get the proper support to get education, a proper place to live and a job, and the chance to outgrow his diagnosis.
He won't be labeled too much, as autism is accepted right now.

With the diagnosis of schizoid traits (which, by the way isn't a diagnosis at all) he won't get the support he needs, but will be considered a freak.
People won't try too much to get his best behaviour shown, because they will be afraid to put too much pressure on him and make him freak out.
There are no special funds for education and job support, and living in a protected environment means institutionalisation.

Ofcourse we're considering a second opinion.
But who dares to go against the diagnosis of the socalled top expert?

So I feel I have to take this on myself.

Between you and me, I think there's a new introduction of the diagnosis of schizoid personality into the area of autism which is unwanted.
That someone conducted research between 1990 and 1995 under a small number of children doesn't mean that this research is still valid today. Especially not because it was mainly research on children which were already diagnoses by others and probably treated too.
I understand some scientists go back to their roots at the end of their carreer and want to make a statement they will be remembered by.

In the past I had to take up my knowledge and stand straight in front of a professor of obstetrics and gynaecology who just started research under pregnant women which was not only unethical, but also bases on the wrong scientific basis.
He didn't like the fact that I confronted him with that, especially not because I was such a young woman and not even a medic. But when he heard I took part of the education in medicine by one of the most famous neurologists, he decided to have a look at my opinion after all.
That he withrew the researchproject and repayed all the funds says enough, doesn't it.
And that he wanted me to enter his ethical committee says even more.

Maybe it's time again to take such a firm stand.

I don't think people are helped with a diagnosis of schizoid characteristics or traits, unless that's the only true diagnosis.
Introducing the term schizoid at the autism spectrum doesn't do justice to autism itself and certainly not to the people dealing with it.

When we're confronted with late onset autism symptoms that doesn't mean there was no autism in the first place.
I've made clear that in the case of my son circumstances made it impossible to observe well, and they enabled symptoms to be explained in multiple ways. Circumstances even were the best one for young people with autism, so the real problems didn't even surface.

In case you're reading this post:

When the circumstances were gone, autism revealed itself in full.
Late onset autism is a description of the observable reality. It doesn't state that there was no latent autism.
I've read that you've written in the past that schizoid characteristics reveal itself during puberty.
Maybe... but that doesn't say that symptoms which reveal itself during puberty are schizoid characteristics.

It's agreed upon in science that the symptoms need to fit a certain descriptions and need to follow a set of rules.
They fit my diagnostic set of rules better than yours, so my diagnosis is better.
I can explain any disagreement in a better way.

One of the main issues is interest in social relationships.
A person with schizoid characteristics is not interested in relationships.
My son is, and he enjoys them to bits when he feels people accept him the way he is.
He feels sad he can't understand social mechanisms, he doesn't understand jokes etc etc.

He's on the autism spectrum.

So give me the joy of knowing my son got the right diagnosis and can go on with his life with the support he needs.


Grrrrrrrrrrrrrrr




This post is part of a series
about lack of knowledge,
lack of consensus between disciplines
and the need for a formal diagnosis
with a psychiatric label
to get support for a unique individual
with autism.
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topdroppers of february






And here are the topdroppers of february.

But not before I've thanked all my visitors, commentors, droppers and everyone else, except anonymous, who thinks it's normal to keep spamming me with comments I'll delete without ever reading them. I don't like spam.



My gypsygoods
The Way I See It
Photography by KML
Slightly Sarcastic
AsTheCrackerheadCrumbles
Online Social Networking
The Ad Master
Crimsonsparkle.net
BeadedTail
Black holes and Astrostuff


Thanks!
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Monday, March 1, 2010

Manic Monday #202

Were you considered popular in high school? Why or why not?

I thought I wasn't, even though I did a lot of work both for the student organisation and the schoolpaper.
Maybe I wasnt very much aware of what others thought, too much absorbed to overcome my shyness and to be a valuable member of the organisations.

Well, at the reunion I got the feedback I should have had during schooltime.
I think it would have made my future different.
I would have valued myself more.

Turned out I was very popular. The most popular girl of the time.
What a pity I'd never known that before.

How old are you in your dreams?

Ageless....I'm just ageless.

Did you ever run away from home? Why or why not?

I should have...sure I should have.
But I never did, because I had nowhere to go without bringing people in conflict.

So I ran away in my daydreams.
I've lived quite a life there. It was almost as good as running away and with a warm bed to sleep in.

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It's permitted to download it to your own computer and upload it to your site.
Please don´t direct link, as it slows down my site. I´ll change the link regularly so you´re left with an empty space or a red warning sign.
Please credit properly.
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