Thursday, December 31, 2009

Happy 2010

december 31 2009



I wish you a very happy new year.
May many of your wishes,
your dreams and your ideas come true.
May you feel inspired
and may you be an inspiration to others.


.
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They're sticking to the wrong diagnosis...

The change of diagnosis I requested for my son with ADHD and additional autism is not granted.

I wrote about his development and after that took the DSM IV diagnostic requirements for autism.
He fitted almost all features.

Then I took the same list from the diagnostic manual they use for schizoid personality.
None of the features fitted.

I even mentioned his characteristics that provide evidence against a diagnosis of schizoid traits (when you can call that a diagnosis. Hmm).
  • no schizofrenia in the family history.
  • limited non-verbal communication.
  • Strong need for routines.
  • limited interests.
  • he has no hallucinations, non-realistic perceptions, no need for social withdrawal, no pseudo-psychotic (nor borderline) episodes.
In his files it was stated they didn't find any indication for impulsiveness.
Well, it's one of the characteristics of a typical ADHD'er, and we're constantly confronted with his impulsiveness. We're kind of used to it and still we feel bothered by it.

It was said in the reports he didn't have any special interests.
Well, I guess gaming all day isn't special enough, otherwise it would be clear that that is his special interest.

There are only 2 problems that might point in the direction they're thinking.
  1. He showed a remarked change in his behaviour around age 17. It almost seemed we were speaking about late onset autism.
    But... the woman who questioned me never ever asked if there were circumstances leading to that change of behaviour.
    Discussing the matter at home with a friend was all we needed. When you're too close, you sometimes miss the obvious.
    School stopped, sports stopped, and with it the social contacts that came with these social events. Added to it: he lost his girlfriend and his older brother moved out.
    He had to find a job to be able to study the subject he wanted, but as a consequence of the recession he couldn't find a job.
    He lost too many things at once for a kid his age, and couldn't cope. In fact he didn't take any initiative to move on.
    But he didn't get psychotic, didn't hallucinate, didn't withdraw more than that he went to spend his time on what he liked best.

  2. Chaotic thinking.
    When they couldn't decide what his diagnosis would be it was mentioned that his thoughts were chaotic.
    I can understand that a person who doesn't know enough about autism and ADHD and hasn't lived with such a person for some time, might see nothing else than a mishmash of thoughts without any interdependency.
    Considering the fact that an autist is very susceptible for all sorts of influences that provide information, like lights, sounds, but also sensations from his own body and even his own thoughts, we can understand that there's a constant influx of items of information that trigger a thought response.
    Someone who can shield himself, someone who is able to discriminate between relevant and non relevant information, will pay no attention to irrelevant influx and simply have no or less thoughts about that, and he will be able to stick to his line of thoughts.
    Selective perception is in autists either extremely good, or extremely bad.
    When the person is impulsive, that means he'll follow these new impulses, follow these new lines, new threads of thought and he'll land far from what he wanted to tell, for instance.
    Combine the two and you'll see the way of thinking of my son. (associative and non selective thinking)

    When he was young conversations went like: "Mom can you help me with my homework? Why is he shewing? There's a tap running upstairs or it's raining, have you heard the birds this afternoon when it suddenly started to rain? I think they all startled and made each other jump up, we have jumped during gymnastics and I did well, did you get that cardigan you wanted? (trying to find out if I did well)I was feeling cold this afternoon. Not now but I would like a hot chocolate, I never get one and you never help me with my homework. You always seem to be distracted when I talk to you. "(Yea, trying to find the inner links. LOL!) OH, and this was said in one breath, without the pauzes I created with interpunction.
    When he grew older he learned to keep thought by himself, so a monologue like above was even more fragmented to the listener.

    Add memory problems and you'll have my son trying to make something clear to someone who doesn't know him.

    I bet she thought he was rambling like a nutcase. Maybe she even thought he saw something flying by which she couldn't see.

    There's a sharp difference between autistic+ADHD chaotic thinking and the inner world of the chaotic half fantasy mind of a schizoïdic person.
And to be honest, I'm not sure how much effort was put in to understand him.
When you could see how many language mistakes were made in the report....

I feel they've made a mistake, and I've found plenty of arguments to underline my statement that the diagnosis needs to be on the autism spectrum.

I've worked with psychotics, I've been trying to have conversations with people who were in the middle of a schizophrenic episode, I know the difference.

Neuroleptica have been offered.
Well, I've seen the detrimental effects on people who were not indicated to use them.
Me oh my.
Unless that psychiatrist is able to convince me completely I can't take the responsibility of accepting that kind of medication for a boy of 18.

Interesting is that during all the years he was in contact with his former psychiatrist and this psychiatrist never ever the question has been raised whether he was suffering from schizoid traits.
I've been asked quite some times, however, whether he was autistic beside having ADHD. By his former psychiatrist, at school and even by friends.
But a formal diagnosis couldn't been made, because that was in the time that here in The Netherlands the combination of the two was thought to be impossible.

I don't want to go in detail here, but it's clear the last word hasn't been said and written about it.

My son doesn't have schizoid traits, he's got autism.

Because of that desastrous school he went to we were not able to see it well. We just sensed it.
Because the way our household was run, the way our upbringing was for a large part to promote development in autistic children, he benefited from what he got, and thus we couldn't see his autism as well.
But it was there.
No schizoid characteristics, but plain good old autism.

But ofcourse, it's a huge effort to review what they have done and certainly not done during their diagnostic process.

I wouldn't care a lot, if it wasn't that as a consequence of the diagnosis they provided he won't get the special help he needs at school, to get a job, nowhere.
And I have to say... with the introduction of "schizoid traits" in the diagnosis of autists we're back to where it all began. At the place where autistic people were told they were schizophrenic and they got medication that made them worse, they were admitted at mental facilities and never got out.

What did we autism advocates of the first hours start with?



Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!






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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Wednesday, December 30, 2009

The continuing story - a referral to a dietician?

december 30 2009



I hate being late at an appointment, but this morning was the one time a year event.
We got stuck at the local train station because the bus we needed wasn't scheduled, and others just didn't arrive. We were 15 minutes late.

Yet, the psychiatrist had to read my sons files while we sat there, forgot to ask how the new dosage of Abilify worked out (no change at all, in fact the change between taking and not taking is only minor: a bit more relaxation between the aroused emotions and behavioural problems. They haven't diminished in number en maybe even intensified in quality.)

But we had something to talk about.


Well, well, well, after begging for help for over 6 years the miracle happened: my autistic son will be referred to someone with experience with eating disorders.

To be honest, it was kind of vague. His psychiatrist will talk with someone who has experience with it. So maybe the result will again be zero, nothing, nada.
But at least it gives a feeling that someone has heard something from my shouting.

He also mentioned a dietician, but I hope that was just to say something and not meant in a serious way.
I know what to cook and what not, and I do.
My other children have normal weight and are very healthy.

He doesn't need a dietician to find a diet that makes him loose weight without hunger feelings.
He always feels hunger, no matter whether he's eating, just has eaten a huge meal or should be plain hungry.

He needs other help.

Point is that there are two matters of concern with my autistic boy.

1.
We're caught between his enormous urge to respond to his feelings of hunger and his behavioural problems.
He can't deal with the hunger, can't label hunger for what it is. It causes a general feeling of not being well, and he acts upon that feeling.

So either we keep him hungry and he acts on that... which means meltdowns and the results of it, or give him what he wants.

For outsiders the choice may seem clear, and in other cases the choice is as clear as can be: no food - healthy kid - problem finished.
In between deal with the behavioural issue. In normal kids the behavioural problems can be treated with ABA techniques, positive reinforcement and even congitive therapy/support, and it'll die down.

In his case that doesn't work.
We've been there, I've used all my skills. Resulting in a 20 hours of the day constant focus on the issue, a child constantly struggling with his hunger and a hell to live at home for everyone else concerned.

We're so far that he doesn't eat more than normal during the first half of the day, but we're not able to tackle the problem during the rest of the day.

2.
What worries me is his constant feeling of hunger.
Even during a meal, with his mouth full, he can ask for more.
At moments that we experience that we've had enough, his body begs for food.

The psychiatrist agreed to send him to a neurologist to exclude problems like a hypothalamic dysfunction.

Well, we'll see.
After all those years it's something. Not more than that.

For the rest the meeting was nothing special.
It's clear they won't invest in helping him to see why he doesn't want to go to daycare.
I so wish I live elsewhere, where people want to invest in every case of autism.
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Tuesday, December 29, 2009

Getting a diagnosis changed

december 29 2009

Ohhh, time goes so fast!
The year is almost over and I feel like I need to do so much more in this year.

Did a lot today, was bluntly disturbed in my hard work by a very unwelcome matter I don't want to blog about, and got all settled and done with, only to find out that many hours had passed, the laundry was still not hanging and I'm still feeling hurried because some things need to be done NOW!

Because I'll see the psychiatrist of the boys tomorrow I worked hard on my reply to the diagnosis someone at the department there made.
I guess her specialty is schizophrenics and she doesn't know a lot about autism, because she mistook his autism and described it as schizoid characteristics.

I feel he won't get the support he deserves with that diagnosis, and maybe even will be medicated the wrong way.
It's not that I can't deal with a diagnosis like that and make people clear what it's all about, but there's some very strong inner gut feeling that it's wrong and I should stand up against it.

Problem is that there's never even half an hour I'm not disturbed in my thinking, and that I have to write it all down.
It's easier for me just to defend my point of view verbally. I know I'm right. And I know that when they see me and the professional in me they'll forget I'm the mom and take me far more serious.

Now I have to go against the decision of a team, and find all good grounds why I want to do so.,

Well, one of the reasons is they focused on his development when he was 5.
He's 18, and I've got 6 kids. So at moments my memory is a blur and needs a bit of massage to see things clear.
That psychiatrist or psychologist or trainee or whatever she was questioned me 3,5 hours!! I felt more of a criminal than a mom of a child who deserves the best.

She never ever asked which situations changed when his behaviour changed, so I can't say she's very professional.

I've described his development in a way I would do for a patient/client, then posed the differential diagnosis, that is the choice of 2, autism and schizoid.

And now I'm giving all arguments for and against those two.

Well, if he were my patient he would get the diagnosis autism spectrum disorder and not schizoid traits.

So let's go for it.

Keep your fingers crossed all will be right.




This post is part of a series
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.



In case you're interested in a rather critical view on our HPV vaccination for girls, go to my other blog, and if possible retweet. Thanks!
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Monday, December 28, 2009

Manic Monday #194

december 28 2009

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

Not during the first years, but when I joined the schoolpaper as a writer and editor, the studentorganization and became one of the board, something might have happened that I didn't realize.
I just tried to develop my talents, tried to have a refuge from home (I was abused), and tried to have fun.

I found my best friends and best enemies, and my first real relationship all there.

Because I was very insecure, I questioned my own accomplishments more than I valued them.

After 25 years, at the schoolreunion, others told me how popular I was.
Oh, I wish I'd known that. Life would have been far different and I certainly would have made other choices.

Well, at least I got the chance to be a bright star at the schoolreunion. See my first love again, experienced that someone didn't want to see me at all, and enjoyed the kindness and sincere friendship for the older alumnists, some which are and were very famous.
No matter was, I experienced that I am just te person I am, no matter how people think about me.

Did you have an enemy or bully when you were young?

I was bullied a lot when I was young.
I was shy, introvert. And I had glasses when I was 4.
I was a dedicated student with a very high IQ, and I used it to learn a lot and read a lot.
Because I was abused at home by my mother I had always to hide the marks of it, which was sensed by some boys in the group.

One apologized later for his behaviour.

If you could go on a road trip with any person (dead or alive) who would you go with and where would you go?

Well I would go to the horizon with one of my friends of high school time.
We both used to write poetry, but in different styles. We both were writers, but for different schoolpapers, and in the studentboard he was the opposition.

We became close friends during and after the schoolreunion and I can say that he knows me best.
We don't see each other often, and in fact we can't live together for a long time, but the feeling of home I feel when I'm with him I've never found with someone else.

So when we're old and have no one left in the world, I think we should team up.
We won't irritate each other as much, because our habits will have leveled out.








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Sunday, December 27, 2009

Third christmasday or: landed in a musical or a bad family movie

december 27 2009


I used to dislike the third christmasday unless we would go an visit my gram or take a long walk in the woods nearby.

Today was added on my list of unwanted thrid christmasdays. Ugh!

I woke up after sleeping in, with a stuffed nose and back ache. My head was feeling like an elephant had a walk over it. Twice!

My autistic son didn't sleep well, I guess.
When he woke up he started a row with his 1 year older brother.

They´ve never made each others lives easy. Born too close to each other, I think, and opposites. One with autism, one with ADHD.
Most of the time I have my feelinghorns sticked in the middle of their room so I can sense when things are about to go wrong and be in time to prevent matters.
But today I took another cup of coffee to get a clear spot in my head, and forgot about them.

Luckily their father was going upstairs when their row started and even though he has no feeling how to deal with any of them, he has a body that takes quite some place and he managed to step between them. Wow!

One of the girls was talking quietly to get their attention and divert their irritability, but only their father answered her. LOL!

So I stepped in, grasped on at his arm and had him look at me, and then listen to me.
He went downstairs with me and flattened himself on the couch beside the door.

My strategic instincts failed me, so I sat down and took a sip from my coffee, asking myself what to do to keep those boys occupied with something else than each other.

Boy nr 2 came down and turned on the music of his walkman. Very loud, and he knows we don´t want that in the house.
Then he stood beside the couch and his brother waved with his foot towards him. Not touching him.

A shout!
And he complained his brother was kicking him.

Well, hej... I thought we were far past thát age!

I told him to go and do something, like visiting his friends, gesturing to his dad he should tell him the lesson he needed.

Then I sat down, telling my son which behaviour is very unwanted here.

At the same time they both shouted: "I didn't do anything, I'm always the one who gets the blame."

For a moment I thought that I'd landed in a musical or a bad family movie.

We managed to keep them apart and watched ice skating. Well, until one of the girls came and we had a nice talk.

A few hours later Fiddler on the Roof was on TV.
I know all the songs, but never managed to see the musical completely.
It was the old version, so I sat down, ready to enjoy it.

Yea... forget it.
Both boys saw each other in the kitchen and started to complain against each other.
"I got the blame, and you started." etc.

So I planted one with one of the girls in front of the TV, telling him to enjoy the program. LOL! And took the other apart.

So I missed the Fiddler on the Roof again.
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Saturday, December 26, 2009

Last Stand of 2009

december 26 2009

1. What did you think of 2009?

Hmmm, it was a very intensive year.
Also with lots of paradoxes.

Some children developed themselves a lot, whereas my autistic son and his father didn't show any development.

There was also the joy about going to england, and the enormous disappointment that it didn't happen.

This year I became more aware of age, and that the fact that I have the complete care for my autistic son is limiting me in almost everything.
I'm always at home, I have always take care of what I say and do, always be the director of how people behave here.
I'm ready to let go.

I've given up almost all my dreams, and that's depressing and shouldn't be.
More than ever I've realised that I'm ready to travel the world, if needed as a reporter, and I'm ready to meet new people. Have a life of my own.

2. What do you think was the news story of the year?

Obama president, followed by the way the republicans tried to undermine everything he planned.
And then ofcourse the recession.

Here in my country there was also a lot to do about a young girl wanting to sail the sees and childcare stepping in in such a way that even more than ever I felt we're just puppets on a string. As long as we do what's wnated from us people are nice or neutral, but when you want to be your own unique self.... oh me oh my!

3. What happened this year that you never want to hear another word about?

I'm not a person to push things aside.
Life is so full of daily stress that I forget what needs to be forgotten.

4. What was your favorite song of 2009?

Dunno...

5. What did you accomplish this year?

The councilwoman gave my son the chance not to go to school until he's 18 when he goes to the daycare facility.
I got my second son live in his own apartment.
And we've finally got a new vinyl floor downstairs.
It's nearly ready now. Just a few things and it's completely done. By me. And it looks good.

6. Did you learn anything new this year?

Yep, laying a vinyl floor. LOL!

I also learned a bit more not to take responsibility for the mistakes my kids make.
I've raised them very well, it's up to them to show what they've learned.

And I'm learning not to save nice things for better days.
Maybe I'm too old when those better days arrive and then I can't use those things anymore.

I've also spend some money just for me. Bought two nice bags without consulting anyone. I haven't earned anything sunstantial with my blogs this year. Just a few dollars and I used them just for me.

I'm sure I've learned a bit more, but I'm too tired at the moment.

7. What are you looking forward to in the new year?


I hope to find a way to make my autistic son accept that he needs to be able to live without me. When something happens to me he needs to be able to trust other people.

And England/Scotland is still on my mind.
I really want to move to Scotland, even when it means living in a tiny house in harsh nature. So I want to work on my plans.

And I want to spend a bit more time practicing smallpipes.

8. What are your plans for New Year's Eve?

Just being at home, celebrating old year in the traditional way and an hour after our change of years celebrating with the UK too, in honor of the warfriends of my father.

9. What's the best thing you ever did on a New Year's Eve?

Having my first child on my arm and wishing my dad a happy new year.
He would never witness another new year with another new baby.

Want to take part too?
Read the answers of others?
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Friday, December 25, 2009

december 25 2009



Merry Christmas to you all!!

After all the weather warnings the rain came as an anti-climax.
Almost all snow is gone now, but we had our christmasfeelings earlier this week and the girls and I added to our memories a walk through the snow yesterday evening.

I taught them a lot about ice and snow and how to se ethe change of weather coming.
So I stood there, pointing out how the clouds came drifting over and said I worried about the weather.

At that moment it was still freezing and the snow was still glistening.

In fact the snow was like a good fondant: crispy on top and soft on the inside.

When we walked home a few times we nearly fell.

Today was rather quiet for our family.

The father of the kids had his mood to adjust to all the changes and tried to make me responsible for his mistakes on his computer. Well, he finally gave in and has spyware on it now. LOL!

And ofcourse it got my autistic son over the hill, because he can't cope with the stress of others.

I was lucky to get his attention diverted when I switched on the TV and a good movie just started. Phew!!

Let's say I've earned my stay at the house again. LOL!

Hope your day was a bit more quiet.



Merry Christmas!
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Thursday, December 24, 2009

Merry Christmas!

december 24 2009



It's raining cats and dogs outside, so the snow will be gone soon.

I feel very lucky that I asked the girls for a walk through the snow, and we slipped and slided away through the white world.
At places there was still 10 cm snow, and the lake was frozen (but not well enough to stay on it.)

We said "hi" to the geeze, "sshttt" to the ducks, and enjoyed the white world.
We even went to see the snowhouses the boys made, but some bullies have destroyed them.

When we were at home, drinking hot chcoclate and eating christmasbread, it was clear it would be raining soon.
It now does...a lot!

The most christmassy feeling I got this afternoon, watching a concert on TV.
People with special needs had a masterclass each, with a famous singer or musician, and they performed.

I was very touched by the beauty of their performances.
One autistic boy sang so very beautiful, that I could listen to him all week and still enjoy it every minute.
And a girl had arranged a famous song and one of her own compositions in such a way that they merged together so well that they each added value to one another.

Talking about integration I think that we should give more room for performances like these.
They were absolutely perfect.

For the first time in ages the kids who were at home were sitting completely caught in the moment with tears in their eyes, their hearts going out to these people.
I wish someone would have taken a picture without us knowing.

All I can hope the world can be together like us this afternoon.

Peace in your heart, that´s what I wish you.
And tolerance towards other people.




Merry Christmas!!




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Wednesday, December 23, 2009

The paradox of christmas

december 23 2009



Christmas is slowly coming closer and the snow is melting.
It's the strange paradox of life.
Our fantasies of how things should be and reality.

Christmastime makes me melancholic.

The bright happy faces of families in booklets and on TV, the abundant dinners, they're all in such a shrill contrast with how life is in reality.

The autistic kids are trying to fit in the changed reality of a white world, christmasdecorations and changed schedules on TV.
And we.... we got the surprise of our life with an electricity bill that hit the roof.

Me oh my!!

Our children are tied to the computer, one is afraid to sleep in the dark, they love toasted bread, we have a microwave which is used often because some arrive late at home for dinner, so often we have to eat in two groups.
But such a bill?

Right now it feels like we have to look far ahead, right over christmas, to the birthdays in january to save money to pay the bills.

Christmas should be an occasion to have a special dinner, special cookies .
All I can hope is that the shops hand out something special in the last hour before closing time, like they did last year. (I still have the ugly ornaments, I just couldn't throw the gesture away.)

I really have to forget this bill for a few days and act happy with what we have and don't spend a single moment on what we don't have.

It's warm here. And it's cold outside. Oh baby, it's cold outside.
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Tuesday, December 22, 2009

Memories of this winter

december 22 2009

During the night I saw the frost disappearing from our country.
The temperature charts showed a smooth withdrawal to the north, and outside snow changed to rain and soon the dripping began.
Large lumps fell from the roof and splashed so hard on the floor that pieces hit the window, so I didn't dare to go to sleep, but kept a nightwatch, remembering a dear friend and her sister who were killed during christmastime in an obscure carcrash many years ago. Her voice echoing in my mind forever.

Then I heard Kim Peek, the man who inspired Rain Man, has died from a heart attack last saturday.
People have remembered Dustin Hoffman, playing the savant in the movie. Forever changing the way people think about autism.
Still now there are many people thinking that all autists are savants, whereas in truth a maximum of 10% has a special gift developed to great expertise.

Kim Peek's talent was his memory.
He recalled 98% of everything his brains touched. More than twice an average human being can remember and reproduce.
His reading was exceptional. A few seconds per page. The left page with his left eye, the right page with his right.

It made people admire him and accept him for what he was. A person with brain damage, considered autistic, who couldn't even dress himself, and who lived all his life in the care of his father.

It brought tears to my eyes to see that he needed to be shaved, not knowing I would shave my own son too.
And it even brought more tears to my eyes to see how often he couldn't deal with the stresses of daily life, so his father needed to direct his behaviour to prevent worse.

Kim Peek became a celebrity because of his talent. He accepted it as a fact of life, at moments being proud of it.
He found a way to deal with people, mainly because he enjoyed the continuous stream of challenges they posed.

Kim reached the age of 58 and is a part of the memory of many people.
May he rest in peace.



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Monday, December 21, 2009

I pity Santa: all those wishlists

December 21 2009

We had more snow, and I've enjoyed a walk in the middle of the night.
The mysterious light, the tiny prints of birds in the snow and the joy of feeling my feet going lower and lower in a thick layer of snow, all made me feel happy and grateful for nature around us.

I had to stay awake, to prevent the ceiling above the terrace between the back door and the shed to come down under too heavy a load of snow.
I pushed it off regularly.

It was impossible to travel properly, so the father of the kids came home after trying to get out of the street. LOL!
For tomorrow people are again asked not to travel unless it's really necessary.
Only 2 trains an hour are scheduled, even at tracks that usually schedule 10 or even 15.

2 of the boys enjoyed themselves with friends by building a snowhouse.
It has become a tradition.
It started when they were 4 and complained they were bored and I couldn't understand that children feel bored when there's snow.
"Make a snowhut!" I said, and they took some buckets for the snow and made walls.
With an old table cloth on top the house was finished.

They put their little chairs in it and ate their bread.

The snowhouses became more and more sophysticated, and now they've even made trenches around it.

I pity Santa this week.

It's almost impossible to reach the shops.
More snow is expected for tonight and tomorrow, which is unbelievable in this area.
We've never had so much snow.

Talking with some children this afternoon it became so very clear how children are raised.
Some feel happy about the snow too, and are helping the elderly to clean the pavement.
Others complain that their parents don't have enough cookies and are not going to the shops.

Well, we don't have much to spend, so this christmas will have it's own charm with the tremendous amount of snow.






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Sunday, December 20, 2009

the little girl inside me and snow

dec 20 2009



Snow.

Snow is the keyword of this winter.

Last night I didn't sleep.
Not because of the snow we already had, but because I had a strange feeling of expectation.
So I put everything from the freezer outside in the same temperature as where it came from and started to defrost the thing.

Once in a while I nearly jumped half a meter high because a lump of ice fell down, but for the rest I enjoyed the quiet and did some things that needs to be done before christmas anyway.

When the night was silent and no traffic or nothing else could be heard I put on a warm coat and enjoyed the silence and look in the garden.
Still that feeling of expectation made me feel strange.

And then... near the early hours of the morning I saw the snowdrops creating white spots and a dark blue umbrella I'd posted above some things in the garden.
It was just like cake icing and then glistening ice cristals appeared on top, like some angel spread her angeldust above the earth.

But looking outside from the window didn't show much snowflakes at all, so I went on with my things until the freezer was defrosted and dry and I wanted to get all the stuff inside again.

When I stepped outside I was completely surprised by the sight of a thick layer of snow and a snowstrom raging through the trees.
I'd heard the wind, but didn't pay much attention when I was inside.

A long time ago we wanted the terrace between the backdoor and the door to the shed covered, and as we're not allowed to make a real roof, we made a plastic roof on a wooden frame, just looking like a temporary thing.

It was heavy with snow.
And when I say heavy, I mean hea--vy.

More than 10 cm snow and more being blown on top from the roof.
It took me more than an hour and almost frozen toes to get it all removed, so the plastic wouldn't burst and the load destroy the playhouse of the children.

When daylight came I could see the fine snow swept from the roofs and trees nearby by the wind.
And it kept snowing.

When they girls woke up we took a walk through the snow, enjoying the sight.

There's only one winter in my memory with so much snow.
I was 4, and I was with the big boys who kept an eye on me.
Meaning they had me sleigh the steep slope they sleighed too, and they had me race against them like any other boy.
I was tiny and light, but I could steer the sleigh very well, as my father had taught me that with much dedication.
In my light blue coat with fluffy white rims I was almost sailing down on the wind.

When my aunt saw me she didn't dare to call me for fear I would fall or sleigh into the stinging bushes.

I remember the fun, the feeling of accomplishment and the awesome dark night when my father walked with me through the snow.

I'm so happy I haven't lost that little girl inside me.








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Thank you Patty69 for the lovely graphics
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Saturday, December 19, 2009

Saturday 9: White Christmas

december 19 2009

1. If you live where you get winter weather, do you prefer your Christmas to be white? If you never see snow, do you wish for it?

Well, we do get winter weather here, but usually it's rain, wind and moderate cold. It used to be called a sea climate, but with the changes in weather they either had to change the definition or the name. Don't know how they call it now.

We have hotter summers, colder winters and much more rain.

Snow is usually a matter of a day or so, so a longer period with snow like now is special. Especially with the extreme low temperatures we now have.

I wish we have a white christmas, but I'm not sure the cold stretches that long.

2. How many holiday cards did you receive from people you hadn't sent cards to, after the "mailing deadline?" Did you send a card anyway?

We don't have a mailing deadline, and when we had I couldn't keep it.
Until now I've got 6 cards and a few online ones.
Most will arrive next week and on the first christmasday.

Some best friends and I will write cards and accounts about the year and send them before the New Year or right after.
Christmastime ends here january 6.

3. When the clock strikes Midnight on New Year's, will you be at home, at a party, or somewhere else?

At home, with some of the boys walking in and out to eat and drink something and go to their friends.

4. Have you ever taken the keys and driven home a friend that you felt was too drunk to drive? If not, do you think you would attempt to if that situation ever arose?

We don't have a car and I don't have a license.

5. Tell us about a gift that you either bought or made for someone else that you wanted for yourself!

We don't do christmasgifts here.
We have the tradition of Sinterklaas, ending at december 6th.

I never buy presents I don't like.

6. What chores do you have left for the holidays?

Many.
In a family of 8 nothing is completely done, ever.

7. If you could buy one gift for yourself where money was not an obstacle, what would it be?

A house and a piece of land in Scotland or in England/Wales.
Needn't be large, but enough to enjoy my hobbies, have internet and be happy.

8. What is one of your family’s favorite holiday traditions?

When I make the large livingroom window into small windows with tape, it's christmas.

Well, we didn't have money anymore for tape.
We don't even have money enough to have an interesting dinner at christmas.

9. If you could give a fellow blogger a holiday gift, which would it be and what would you give them?

There are many bloggers I like and who deserve a gift.
But I sure would want Andrena from http://www.heavenlyankh.com/public_html in Philadelphia be surprised with a nice gift for the people in her parish. For years we've longed to see each other and it didn't happen. So when there's a very rich person out there reading this: please let me surprise her at christmasnight.



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Friday, December 18, 2009

snow before christmas

december 18 2009



It's terribly cold and maybe we'll even have the coldest night of the season.
There's lots of snow outside and tomorrow we'll get even more.
I love it!
It's so beautiful!

Today I suddenly realized we're very close to christmas.
Ofcourse I knew, but there's so much to do here every day that I often don't even think about the next day, let alone more days ahead.

Especially now the girls are at home too, and their father didn't go to work, it was a day without a single moment for myself, until now.
And my eyes are almost dropping closed.

Yes, I know, it's a french tag.
But it's beautiful and at christmas we're always able to understand other people, don't we. Or at least we should try.

I always feel I can't live up to the expectations of others and certainly not to those of myself.
This year I have to rely on the tradition between friends: writing our christmascards between christmas and new year, unless I'll find time to get the cards from the attic tomorrow.

I used to feel bothered because family wouldn't receive their cards in time, but now I'm getting older I know it's only about what they want.
They never bother during the year to give a signal of kindness or lift a finger to help. No birthday cards, nothing at all.
So it was rather strange I felt the inner need to be the best girl in town and write a christmascard in time.
Maybe I wanted a family a bit too much.

The few friends I have left, because my autistic son kept me tied to the house, are as busy as I am.
Christmas itself brings us to a halt, and then we write an account about the year and send it to all.
During the years we've written the books of our families.

So each year I'll prepare for christmas just my own way.
My simple way.

Looking for beauty in graphics, in nature.
Trying to guide my children through this time where other families come together to celebrate the light of christmas.

I remember those days from when my gram and dad were alive, and the memories warm my heart.
Like them I'll try to make my home a beaken in the cold, a warm place for those who want to be part of it.

But my heart always aches, because those we've lost in time should have been here.
Just smiling and laughing and being how they were.
There are always empty places at the table.
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Thursday, December 17, 2009

The continuing story - surprises

december 17 2009

After he (17, classic autist) went to daycare and came home happy, I assumed he would go the next time without problems.

Wrong!!

he hasn't gone since, even though I've tried so much to make him go.
We even promissed him double pocket money, threw a fit to get it without going to daycare and in the end... didn't go.

Yesterday I talked with the woman who supports him there. We didn't have much to say to each other. It's not us who need to go, it's him.
We have tried everything.

She invited him for the christmas tea today, but he smiled and said that he couldn't cope with such a large group and made very clear he didn't even think about going.
I feel he made the wrong decision.
The people there are so nice and understanding, I would have even gone without him.

Not much later the mail brought an envelope and in it a nice letter and a small booklet.
He was invited to have a look and chose one of the items in it. It's from the organisation which runs the daycare.

He probably wants the backpack, even though it'll stand unused in his room.

It's sad he has all the opportunities right in front of him and doesn't take them.

There are people who say we should be positive about autism, and they nearly shut my mouth with their bare hands when I tell what we have to deal with on a daily basis.

They have children with autism who are able to face the world, who do well at school, with or without support and a lot of energy invested by all sorts of people.
They see happiness on the face of their children when they accomplish something or see something they like.

Here we're struggling from day to day.
He dropped out of school because he couldn't cope.
He needs to be told everything he needs to do and we either get a meltdown, temper trantrum, or a faint smile like he thinks we're mad.
Simple things, like taking a shower, are for him huge undertakings and most of the time he just refuses. Imagine a person of 150 kg not showering a week. Yea..
When he goes he needs to soap put in his hand, otherwise he just lets the water run down. He needs to be told to shampoo his hair, but when it's not straight in front if him he tells me there's no shampoo anymore.

Each time he needs to go somewhere we need to prepare him well, and even then he keeps complaining all the time.

He complaints all the time, regardless of how others feel or what they are doing.
He only stops when he's asleep.

Ofcourse we tried all the books, all the theories, all the different kind of wondercures.

But all I know is that nature is more powerful and I'm just a no one.

Today it snowed almost all day.
He never ever wants to get out in the snow.

This afternoon he suddenly came down, walked through the room and headed for his shoes and put them on.
Then he took his coat and went for a stroll outside.

I still doubt whether it was a dream.

I can't count how many times I've asked him to walk with me, and he suddenly went. Without even asking me to go.

Yes, it was a day full of surprises.



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Wednesday, December 16, 2009

December food

december 16 2009




Here december starts with Sinterklaas, with it's special foods and candies.
This events marks, in a way, the end of autumn and people used to eat different to be better able to deal with the burden of winter.

The foods are rich, spicy to keep warm and keeping the body moving.

Combined with the vegetables of the season and the traditional recipes they're not very fattening, unless you're not moving enough.

When I was young we ate plenty.
First celebrating Sinterklaas, then eating what was left over and after that we had to taste what would be on the table for christmas.
Because we were always busy with helping the elderly, cleaning the pavement, going everywhere walking or with our bicycles we burned the delight right off and never even gained an ounce during winter.

A few treats were sugar only.
They were meant for special occasions and we got one or two, not a handful or a complete bag or box with them.
We knew then that when you start eating sugar only, you'll keep eating while getting hungry at the same time.

The kids now eat far too much sugar and there's no balance between intake, movement and need.

Last year I was very strict in sticking to the old ways of december eating and it worked well for the children and for me.

This year I'm doing the same.
But it's like I'm in a contest with advertisements on TV and in the papers and magazines.
Sugar, chips, one sided menus.

And when you see what's on the plate one hope there'll be no storm at christmas, because the little portions will be blown from the table within a second.

Well, I'm glad we can't afford food what's not belonging to the season, and I'm not going to buy sugar only sweets.

But we enjoy the traditional dishes, sweets and activities.
The iceskates are ready for next friday when the girls go skating.

It's december, let's live that way.


Thanks Riannon for the tag.
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Tuesday, December 15, 2009

Contactperson between parents and school: transparency?

december 15 2009

At the school of the children bullying was/is a huge problem.

The interesting thing is that we asked them about bullying when the girls wanted to apply for a place and they said they were on top of it.

Well, I've never informed a school so many times about incidents. And ofcourse other parents took action too.
In fact the group was behaving like a loose projectile and my girls felt disturbed and one of them did worse than even. They felt alienated, because teachers too no action at all.

Well, finally there was so much toodoo, that they had a meeting and the contactperson between parents and school was part of it.

He gave a good account after the first meeting, which resulted in a few worthwhile reactions.

Last week there was a new meeting to evaluate the changes.

I received no account at all.
So I wrote the guy a mail, asking how the meeting went.

He's going to write an account with the school and only then give us the information.
That'll be in the second week of january.

How about transparency?
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Monday, December 14, 2009

Decorating for the Holidays and autism

December 14 2009

I used to love the time before christmas.
Going to the attic and opening the boxes with christmasdecorations was almost a holy activity.
With only one or two children asleep I could spend almost all afternoon looking at angels, old cards and all the glitters before taking them down.

But things have changed.

Autism entered our house and the 4 boys soon showed a wide array of the autism spectrum disorders. The youngest boy had the most severe form: classic autism.
He faces daily problems of adjusting to things we just take for granted. What we enjoy can be a disturbance for him, what we love can disrupt his feeling of wellbeing.

Now it seems long ago that I discovered that the light caught in a christmas ornament can pierce into his brains like a knife, that the smell of the christmastree can overpower all his senses and that christmas makes him feel lost in time and space.

All the changes that take place makes him feel like his home isn't his home anymore.
When it's fully decorated he feels like a stranger in a foreign world and he behaves accordingly.

This discovery made me understand a lot of what many autistic children go through.
Their parents and family members complain that they behave so bad at the most important days of the year and often they don't understand why.

Some children don't have to deal with autism in such a terrible way as my son does.
They only have part of his sensitivities, but with the many changes that take place during christmastime there are far more disruptive events that during other parts of the year.

Decorating for the holidays has become a step to step procedure that is undertaken each year with caution and consciousness.
In a way I'm used to thinking how my son might be influenced by what is done.

Introducing changes is done step by step.

So you won't see my house in the normal look at one day and fully decorated the next.
Oh no!

You'll see a red line through the room with two ornaments hanging on it.
When the cards arrive, he helps me hanging them on it.
Whenever he likes a picture my mind scans the memories of all the christmas items I have. Is there something similar? A music box perhaps?

Each day something is added to the decorations.
The stockings on the door, a basket, ribbons on the lamps.

The same goes for smells.
He likes applepie, so you'll find me baking one, with extra cinnamon, and sudden smells beside it, like anice and clover.
By attaching new smells to smells he likes I'll introduce what he has forgotten from last year.

But each day is a new one.
He can wake up and find out the light outside is different from what he expected and it disrupts our life. He'll feel irritated, angry, and explaining doesn't always help.

Friends sometimes laugh when they see how slow my house is changed into a christmas place.
Changes even take place after christmas, right through the change of years until the 6th of january brings a halt to adding items.

That evening we sit down and I'll tell the story of the three wise men that left all their secrurity and wellbeing behind and made their curiosity lead their way.
They followed a star and didn't know where they were going.
They just knew deep inside them that traveling through life brings insecurities and feelings of being lost and alone, even when they were together.

But after a great while struggling with all that changed around them they found a tiny baby.
Something new, someone they hadn't seen before.

They were overpowered by their feelings and didn't even try to understand them. They just kneeled and greeted it, perhaps with cute purry sounds, completely forgetting they had been so very important at their own homes.
They felt so good, that they handed the little baby expensive gifts.
A little bit strange perhaps, because babies should be given toys and lovely musicboxes.
But they gave their best, and all they had, and they were silent for a long time.

Christmas doesn't end with a holy baby, born under bad circumstances and put in a manger.
No.
The christmasstory ends with the three wise men who struggled a long time to follow a star and who arrived as complete strangers at a place they'd never been.
They sat down, took their time, and felt at home. Because in that little baby they sensed what is good for every human being: innocence, love and trust.






Whenever you have questions about autism, just let me know.





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Sunday, December 13, 2009

Never boring


december 13 2009


It's never boring here.

Today was a rather quiet day, because my autistic son thought he would grasp beside his pocket money when he would terrorize us this weekend.
Apart from bothering his sister during homeworld he kept rather quiet.
What a relief!

I even took a much needed nap this afternoon, and was able to work to the vinyl floor in the small hall. Now it's completely done too.

In the evening suddenly the phone rang and one of the sons told he was having leakage in his kitchen.
As he has a very open kitchen in his apartment, that could mean a complete new floor, so he was kind of panicking.

Me oh my, he's got special support there he can ring all the time, but it's mom and dad.

Turned out he didn't even have a bucket (why not??), so I suggested to put his dish washing bowl under it, a pan, or even the waste bin.

After a bit of talking with his father, with me thinking he had a huge waterproblem, it turned out he was trying to wash up directly in the sink and half of the water had gone after he went out this afternoon.
That's plenty of time for a liter of water to drip drop away.

So no water spraying from somewhere but a minor leakage.

Just when I wanted to advice him not to put water in that sink anymore, a friend arrived.
My son called back later.
Problem was fixed.

Well, one of his brothers was on his way to bring him a bucket.

So we really had a quiet evening. LOL!



Thanks Spiderlady for the tag!
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Saturday, December 12, 2009

Don't Talk to Strangers

december 12 2009

1. Tell us about a night that you spent with someone who was a stranger, yet by the end of the night you were very close.

Spending a NIGHT with a stranger?
I can't remember I ever did.

2. When is the last time you rode the bus?

2 weeks ago when I went with one of the kids to his psychiatrist.

3. Describe the last time you stood up for a cause.

It's my daily activity. Mainly I stand up for autism, but a few minutes ago I got really angry because at Whuddleworld an event was planned - the Talk to the Elders Day - from 7 to 9 pm CST, which is in the middle of the night for us.

I think that when you have a site for all the world, events should be at normal daytimes. I don't like people to be that shortsighted.

4. What is something you would like to do, but you're afraid of the risk(s)?

I would like to stand up for peace even more than I do now, but as I still have children at home I keep rather quiet compairing to my feelings.

I would love to skydive, fly a plane, and go to space.
Skydiving needs more preparation than I have now, flying a plane without training is dangerous for those in the air and on the ground and going to space unresponsible moneywise.

5. What would you most like to accomplish before the year is over?

I blogged about that a few days ago.
Main thing for this weekend is reviewing/re-writing the diagnosis of my 3rd son.

6. Name something you'll miss about 2009.

Don't know.
Maybe the happiness when I was told that I would go to England this summer. It never happened.

7. If you could invent something, what would it be?

Uh... what did I say the other day?
Can't remember.

But I know something else: a desinfectant spray for children who refuse to shower.
Something that can be sprayed on a kid when he's asleep, so he doesn't smell anymore.

8. What first got you started blogging?

That was in 2001 I think, when someone send me a link of a blogging site.

9. How did you find this meme?

I guess I found it by looking at the site of a daily meme.


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Friday, December 11, 2009

Meds not available in my country? I got them!

december 11 2009

Got my meds from the pharmacy again today.

In the past I always got exact the same as the doctor prescribed, but the last years there's a shift from brand names to the name of the main ingredient.

As long as I get what the intention is, I don't mind.

But when I get something different without any message, I get irritated.

OK. I used to be patient.
But this pharmacy has made so many mistakes and they've handled it so careless, that I wonder whether these young girls who make the decisions when the pharmacist is not present know what they do.

With the international exchange of meds I'm regularly confronted with names I can find on internet, but not in the register of admitted medication in my country.
By law meds that are not registered should not be given.

Pharmacies hide behind the fact that the name of the main ingredient is the same as the name of a main ingredient of a registered medication.
But when I mention that there are also ingredients added to give colour, keep the whole lot together etc etc, they tell me they don't matter.

Well, when it's chalk or something like that I do agree.
But some substances are also present in my others meds and when you add them all together it's no wonder I need to use anti-allergy medication too.

I'm for instance allergic to some colours that are used.
It's not a problem when we're talking about one or two pills. I know that. But with my intake it adds up and causes reactions.

And I've had serious problems keeping my glucose levels in control when I suddenly got my main diabetesmedication in boxes with texts in greek. Were they transported or kept in temperatures that were too high?

Being dependent on medication is enough.
I hate it when others won't take it serious or only look at the costs.
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Thursday, December 10, 2009

inheritance with surprises

december 10 2009

When my MIL and my brother IL died last summer we took it upon us to give them a proper funeral and handle their financial affairs.

It was clear there would be no inheritance, certainly not, because the house of my brother in law couldn't be entered because he'd been there for a week during the hottest days of the year. So all his furniture and belonging, including legal papers had to be destroyed by a specialized company. No insurance who pays for that, but we had to come up with the money to get it done.

Apart from all the feelings we had we were suddenly confronted by a brother who had left his family many years ago and who thought there would be a lot of money left for him.
Let's say he had a hard time bothering us, being suspicious and finally accepting that there would hardly be anything left.

It's winter now and the taxes already have been knocking at our door to get their part, but we still see an occasional bill.

Last week there had been a mistake and instead of canceled a magazine had renewed the subscription.

Today we got an insurance policy for a lot of money.

Being tired of reading through it all we wanted to lay it aside for the weekend, but an hour later picked it up and read it.

They had created a complete new insurance for our house and everything in it... on the name of the brother IL.

Are they nuts??? Or just asleep??
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Wednesday, December 9, 2009

Get lost with your spam!!

december 9 2009

All day I've put up with the complaints of my autistic son, all day I've been busy trying to please others and that's not easy in a large family with 4 kids with special needs, so when I arrive at my blog I try to have a little bit of time for myself, a bit of relaxation.

So tell me why you're bothering me with spam??

Do you really think I have comment moderation on, and a comment policy well written and accessible from the link bar of this site to put your dirt on my site?

Get lost!

I've spend deleting all your junk at this blog and my other blog.

More than 300 spamcomments I counted and then I stopped.

Let's tell you: Neelie Kroes got commissioner of the EEG for ICT and internet and I'm sure she will use actions like yours as a boost to her energy of getting rid of unwanted behaviour online.
We have people convicted in court for spam.
It was a delight to see how much they had to pay. Not hundreds, but thousands.

Don't think you can't be found because you hide behind certain IP's.
You can be traced and I'm sure others who are dealing with the same problem love to team up with me to inform the authorities and see justice done.

So leave me alone.

Go and cook something nice and bring it to people who can't afford it, organize a christmasdinner for the poor, or use your time to do something worthwhile for kids with special needs.

I know I can do with someone who helps me, and I'm sure there are more autism moms who do.

Get lost with your spam!!!
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working at the christmaslook

Working on my christmaslayout.
Needs adapting.

Sorry!
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Tuesday, December 8, 2009

As The World Turns

december 8 2009

The news came as a huge shock: next year they'll make the last part of As The World Turns.

I'm not that kind of person who discusses a soap with my friends.
But my children know that As The World Turns is a part of my life.

It was in 1985 when I was pregnant when my gynaecologist told me to take a rest each afternoon.
I should either sleep or watch TV, was his strict advice.

Well, sleeping was out of the question. I was far too energetic to keep myself asleep in the middle of the day for an hour without being a restless wreck during the night, so I switched on the TV and found something to look at.

It was in the time that we couldn't zap without pushing a button at the TV itself, so even though I was bored I didn't switch channels.
My attention was caught and during the next week I became a fan.

I've watched ATWT ever since and during the years I've missed about 10 episodes. That's all.
Whenever I couldn't see it it was recorded by one of the children and I was able to watch it whenever it was convenient.

My children have told me that whenever they would get the chance they would apply for a role for me to act with "my second family". And my oldest has promised to be on the look out for Elizabeth Hubbard, who plays Lucinda Walsh, when he's in Amsterdam. She's been here playing in the main national soap for three weeks this summer.

Well, I don't think I'll ever get an invite anymore.

But I know I'll miss As The World Turns when it stops.
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Monday, December 7, 2009

Manic Monday #191

december 7 2009

If you could bring one character to life from your favorite book, who would it be?

I don't really have a favorite book.
Use to have one: Heidi.

But I've read 4 of the books of Christine Marion Fraser's series of 6 about Rhanna.
(Couldn't find two parts here in the library), and she really caught me with the way she described the people and that part of (fictional) Scotland.

So let me be Rhona and enjoy Scotland as described in the books.

Which cartoon character do you resemble the most?


None. I don't like cartoons and I don't resemble a cartoon.

What vegetable do you most resemble?

It hasn't developed yet.
It's something growing in very difficult circumstances, hard to be found and very spicy and soft to eat after you've taken a lot of effort to peel it.




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Sunday, December 6, 2009

christmaspreparations are rolling

december 6 2009

Now the sinterklaastime is over the dark days before christmas start.

For me it means squeezing in a few days all what needs to be done for my 6 children, cleaning the house, and trying to get in the mood for christmas.

I'm not a person for lists, but I tend to repeat in my head the most important things.
Last year I tried not to do that and free myself from the burden.

So here's part of the list:
  • daughter 1
    • make her practice music
    • make her clean up a few of her things
    • keep her motivated for school
    • make her help others a bit more
    • talk to her mentor at school about her progress
  • daughter 2
    • make her practice music
    • make her jump up less to help her brothers and sister
    • try and do something nice with her
    • talk to her mentor at school about the way the school deals with her being bullied
    • talk to the schoolnurse who said she should change so other people won't bully her (!)
  • oldest son (asperger)
    • make an appointment with his social worker
    • see if we can arrange something for second christmasday
    • get the autism site online
    • work out some information evenings we're going to give about autism
    • cut his hair
  • son 2 (PDD-NOS)
    • Make an appointment with his social worker
    • Try and find him a good table and some stuff for his new apartment (bedcover)
    • Have a look in his paperwork, if nothing is forgotten
  • son 3 (ADHD and ASD)
    • Rewrite the material for his diagnosis to convince his psychiatrist his diagnosis is wrong
    • Clean his stuff upstairs (ugh!)
    • cut his hair
    • Arrange school
    • sort out paperwork of his work
  • son 4 (classic autist)
    • Go to the family physician with him (tomorrow)
    • Make him go to daycare
    • Speak to the psychologist of daycare
    • Make an appointment with his social worker
  • house
    • go to the attic, clean and get the christmasstuff
    • decorate for christmas
    • get the last part of the floor done in the livingroom
    • etc.
Well, I shouldn't forget to redecorate the sites and do a lot more!
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Saturday, December 5, 2009

Quick message from Sinterklaas his workplace

december 5 2009

It's chaotic here and I took a cup of coffee to have a quiet moment.

The smells are good. Like spicey cookies and soup and whatever is needed for Sinterklaas evening.

The girls celebrated Sinterklaas with their friends yesterday, causing panic here when a certain bracelet was shown.
Oops. I guess it has been bought here too.

So that Sinterklaas left in a hurry for the shopping centre in a mood that promisses even more rain and thunder. LOL!

Another Sinterklaas needed ideas and I gave so many that I'm sure I'll see at least one item back, probably in my shoe.
I wish I forgot to suggest an addressbooklet. LOL!
But I even suggested a coupon for half a tin of my favorite handcream, so let's hope that'll be the one I get.

My autistic son is angry, because no one has the time and rest to sit with him while he's computering.
He likes the company of one of the girls best, but she hurried to the shopping centre too, leaving her bicycle lights at home, so maybe we'll get an expensive surprise along with the rest.

Let's see: everyone has been called that the plans have changed and we'll meet together this evening.
There's something to drink, to eat, presents are in.
I'm going to move things around in the livingroom, so there's plenty of place for everyone.

The shower is waiting for me, my autistic son needs to be shaved (and he can't do that himself), and the rest of dinner needs to be made.

Hmmmpfff...
2.5 hours to go till the event starts.

Bye!!!
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Friday, December 4, 2009

About Sinterklaas

december 4 2009

Life would have been far more easy with only 2 children.
Take for instance Sinterklaas.
It's the time when people here in The Netherlands give each other presents.
We don't do that at Christmas, we do it for children from the moment Sinterklaas arrives here, and for grown ups as close to the date of the end of the Sinterklaastime. (Which is in the night of december 5 to 6)

When the children were young, Sinterklaas came in the night and he left loads of presents for the children.
They would find them in the morning, on the table.
Some of the kids with autism were afraid of people entering the house, so I always said I'd given Sinterklaas the key and he would leave it on the table when he went.
Luckily I never forgot to leave the keys well in sight.
Before the children went in the room I went in to see if they'd really left.
(I crawled under the table and behind it before they were allowed in to take the best photos of their lovely surprised faces)

Because we didn't want them to mix up things when they were a bit older they each got a chair with their name on it.
Worked perfect!!

The last years we were hardly able to give the children some presents.
We were lucky the younger ones celebrated Sinterklaas at school, the older ones didn't really care.

At home we put the names of each of us in a bowl and had everyone take one name out without looking.
It was the beginning of a time that the kids tried to find a nice present for a few euros, and we scraped as much money together to buy them the traditional items, like a chocolate letter, pepernoten and taai-taai.

This year we can't do much either.
So again I feel lost and sad.

It was so nice to surprise the children in the past.
At times I needed the whole evening and even part of the night to built garages and kitchenettes, which they took apart in a few minutes and put together in 5. LOL!
They were so happy.

Now it's even difficult to get them all together at the same evening.

Last week it turned out they could all be together at sunday, but yesterday plans were changed and now they'll all be home tomorrow evening.

Having seen their wishlists I know that some of them have dreams that won't be fulfilled. I'm talking about small dreams.

It makes me sad, and makes me feel that I've failed.

The last years those feelings were fed with all the christmaspreparations of other people I saw at the blogs. Reading what they bought for their children...

Still, I'm glad we here can celebrate christmas as it is, without presents and what comes with it.

Just christmas.

I'm looking forward to it.


Want to bake something we eat:

Recipe for you
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Thursday, December 3, 2009

The continuing story

december 3 2009

Well, last wednesday he didn't go, as I expected.

His mood was below level all monday and tuesday. (I won't even mention the weekend)
I can't cope with this much longer.
It's not good for any of us, and I think the girls deserve more of a family.

He complained about pain in his foot, which can't be controlled.

All I could do is make clear that it's his own decision, that he needs to go and that he will experience the consequences in the long run.
And I told him he needed to call himself. I wasn't doing that anymore.

He called himself!!
The first time he did so and he did it quite well.

I've made an appointment with our family physician, can't do anymore.

Like I was afraid when the possibility of daycare came up, we're in the same situation as when he went to school.
Maybe even worse, because he's not expected to go every day, just two half days, but he's a terrible family member all days.

He seems to be intelligent, but he's not. He can't even understand that he needs to create a future for himself and that he needs to work on his skills and abilities.

The way he behaves makes that we're longing for his next birthday.
Then he'll be 18 and the psychiatric facilities in town will be able to admit him.

We're going to move him away from the psychiatrist he has now to the one for grown-ups. We hope he'll do more than prescribe pills that help only a small bit.

It's sad to feel my wish for him to leave the house growing, and to see the same happen with the others here as well.

He won't leave without destructing everything in the house, so we have to find a tactical way.
Well, we've got 7 months to come with a solution.

So sad....
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Wednesday, December 2, 2009

More soldiers requested? At what cost, President Obama?

december 2 2009

The pressure on our government is increasing to go against former decisions to stop sending soldiers to Afghanistan.
One of the promises of the elections here was that the mission would end at a certain time (next year), and that after that no soldiers would be send to Afghanistan anymore.

Now america is requesting to send more soldiers and ofcourse our prime minister and his party are trying to fulfill that request.
As we say: "he wants to be a good boy and doesn't want to go against america."

In the past participation in military missions was requested with referral to WW2, when we were occupied by the Germans and America was one of the many nations that took part in fighting the Germans and freeing us from war.
(Conveniently is forgotten that they bombed our town by accident, killing many people, including 5 family members of me.)

Well, I think we've repayed our debt by now, especially when I see what the consequences are of that request.

As I said, the prime minister and his party are afraid of the political and economical consequences of saying "no", forgetting that the human and economical burden of sending more soldiers will be the negative consequence, as will loss of political trustworthiness of our government..

Even worse.
Other parties in our government are against sending more military personnel and when they want to please their constituency this will need to go against the other party/parties which probably will result in the fall of our government.
I'm not sure if that's what america wants.

Putting our government under pressure means medling into our internal affairs, making our government violating agreements with the people here. In the end resulting in international political friction between america and our country.
We were finally regaining some confidence in america.

Well, President Obama e.o. get yourself informed well about the role of our military in and outside our country (we have, by law, a defensive army), the impact of your requests and the political construction of our country.

Maybe it's of help to make a good inventarisation of what you want to be done in Afghanistan and what's really necessary to get the jobs done.
Maybe you don't need soldiers. I think you need good instructors, craftsmen and people who can help the government there fight corruption, disorganisation and matters like that.
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Tuesday, December 1, 2009

Ramses Shaffy died

December 1 2009


Heaven surely has become brighter today, when Ramses Shaffy was invited in.

He'll do away with the golden forks and knives, and he'll sing as bright as the sun, as dark as the new moon's night.

Ramses was a remarkable person.
He was one of those people who are in touch with their inner soul in such a deep way that they can't do nothing else than to be themselves and to inspire others.

Some people didn't like his singing, because it was heartfelt and no performance was exactly the same. Musicians had to adjust to him and his talents when he caught the feel of the moment and improvised from deep within.

He never failed to touch me.
Maybe because he resembled my gram in his being.

At moments when I felt to adjust to the expectations of others I would hear one of his songs in my mind and remember what they both used to say to people: "be yourself. Do how you feel you should do."

I don't think he's a person who needs a golden halo above his head.
He was no angel, and the way he lived caught up with him during the last year of his life, when cancer troubled his body. He always suffered the consequences of his actions, didn't escape it, never.

He was a charismatic person and I'm sure his songs and the way he was will be with me all days.

Rest in Peace Ramses, smile and keep on singing.
Heaven will be a better place with you there.


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