Tuesday, June 29, 2010

A place to live - well, well, well... told you so!

a place to liveMy second son is doing well.

He enjoys living in his appartment, benefits from the special support, and is on his way to become a photographer.
In fact he's often asked for events, he works as one of the volunteer photographers of a paper, and he's an emergency photographer.

Last week he had a meeting at the school for individual education to evaluate the time he's studying there.

Not everything went the way it should be, mainly due to the many changes the school is going to.
They have moved nearer to his appartment, which is great, but there have been so many changes that he fell back on agreements.
And he takes them literally.

Fun thing is that I warned them almost two years ago, but the woman told me she knew everything about autism spectrum disorders, so I had her find out everything herself.
I can tell you, she bumped her nose so often, I'm amazed it's still sticking out.

When discussing matters my son suddenly asked her: "Have you found a reason, a cause for the problems we have?"
She replied that it was due to his taking things literally. She should be more precise in her instructions.

After a short silence she said: "Your mother said so with the intake. And she was right."

He brought muffins, chocolate ones, to celebrate this.

"Mom", he said, "I leaned back and said: well, well, well... she told you so!"

I don't know if that helped their relationship very much. LOL!
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Care

The minister of health has stopped the individual care budgets because all the money in his budget has been spend already.
That means that applying results in a place on the waitinglist and hoping that the new government won't stop the whole idea of individual care budgets altogether.

In a case like this I look over the border and wish some organisation would go international.

Take for instance Allsup. It's an organisation which assists people to receive the social security disability insurance and medicare benefits they're entitle to.
They know the ins and outs of laws and practices and work fast.
One of the ways to get a process started is not making appointments and handing over loads of files and filling forms until you drop. No. They have an online evaluation.

Ofcourse it's nothing for nothing.
They charge a fee when, and only when the benefits are obtained.
I think that's resonable, as it's always difficult to fight the system. And they're able to get people accepted for benefits after they have been rejected.
So it's well worth a try.

Here I can only hope today's discussions in parliament will bring a change.
Some services are provided, but people can't chose their caregivers.
Not the summervacation is near, that means that people are confronted with untrained students at their bedside.

With the recession we've lost our standards.
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Monday, June 28, 2010

Manic Monday #211



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

Blue. So I can see the sky the way it is.

If you could have a room full of any one thing, what would it be?

Peace, understanding, kindness.

When you mean touchable things...I don't know.
Money seems to be too easy an answer.
Traveltickets, maybe. So I can go everywhere in the world.

Imagine you could go back to the age of five and relive the rest of your life, knowing everything that you know now. You will reexperience your entire adolescence with both the cognitive ability of an adult and the memories of everything you’ve learned form having lived your life previously.
Would you lose your virginity earlier or later than you did the first time around (and by how many years)?


Well, I wasn't one of the early ones, so I think it would be earlier. But I don't know by how many years.
But maybe I'd never meet the right person.
With all the knowledge I would know better what was good for me and what I need, so it would be very hard to find the right person.

I don't think I would be a happy child, as so much has happened in this life.


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To the dentist, tomorrow

Two weeks ago two roots of a molar were extracted.
One completely, on partially.

It was a huge job and the dentist used a lot of force to get the second one out. But it wasn't enough.
He put stitches in and told me to use the painkillers.

I did.

It's two weeks ago now and I still need painkillers. Not as many as during the first week, but I can't sleep without them.

The wound hasn't healed well.
And everyone with a little knoeldge on the area, including the charlotte cosmetic dentist, would shake his head.

Some of the stitches have come out.
One didn't.
I think I'm going to use my embroidery scissors later this afternoon to get it out, because I can control what I do. The dentist will just pul at the stitch to lift it enought to get the scissors under it. Pulling it hurts badly, and creates a longlasting pain, so I'll take the honor myself.

The hole has shrunk a bit, but it's still deep.
He has cut through the gums/gingiva from one molar to another.
He folded it back and stitched it, but at one molar the stitch itself prevented it from healing, as it tore through the gum downward, and at the other side the gingiva came loose from the molar and is a loose flap. Which hurts when I'm eating, as food gets underneath it.

At the inner side of the jaw, in my mouth, a piece of the root can still be seen.
It hasn't been overgrown yet, and as it is as red as the berries outside, since this morning, I wouldn't be surprised when he either has a go at it, or prescribes an antibiotic.

I'm not looking forward to a visit to him, tomorrow.
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Sweet berries

Today is the second day with temperatures above 30 degrees celcius.
I can't remember the berries were ripe as early as this year.

This morning I poured a few buckets of water on the ground and this afternoon the berries are juicy and large.
I tried a few and they're surprisingly sweet.
So I guess they'll be eaten this evening with joghurt ot icecream.

Other years they can be sour or even bitter.
Those berries were used in sweet cakes, or with bananas and other fruit in smoothies and jams.

Oh... what do I see?
he girls are coming home from school and are stripping the berries and eating them with delight.
OK.
Nice way to get your vitamins, ladies!
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Stretch Marks

Isn't it strange that no one told me I would get stretch marks?

Do you know that not only pregnant women get stretch marks, but that loads of other people will get them too sometime in life?
Even men... while growing their beerbelly, exercising to get strong arms, for instance.
It can start already in adolescence.

It has to do with the growth of the body, and in women with hormonal changes which disrupt the production of collagen.

It's just one of the changes one has to undergo when growing older or producing the next generation.

My gram told me there was only one remedy: cocoa butter.

She bought it for me in a small pot at the pharmacy and told me I could use it to moisturise my lips too.
She got me hooked to lip care.

Right now you can find all sorts of cocoa butter stretch marks products in shops and online.
They're not as greasy as the products I used and sometimes other ingredients are added to make it penetrate into the skin faster and deeper.

Now it's summer season we all can do with a bit of help.
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It's in a name

Last week we had a meeting with a secretary sitting in to take notes.

Oh, no!! I mean: management assistant.

Having dealt with lots of secretaries the past 30 years I have taken a close look on the difference between a secretary and a management assistant.
A practical look, that is.

We used to get coffee poured in a cup, with the spoon at the right, and a cookie halfway left-to-top.
The secretary used to sit at a place which was slightly out of view, so no one would talk to her, so she could concentrate.
Often she would be able to write shorthand(, and she would be able to read it back).

I've seen perfect transcriptions and some very trusted secretaris were so good that I never read their work before signing.

The management assistant I was confronted with last week was a very nice woman.
We brought our own coffee and tea upstairs from the canteen, but the coffee and teapot was standing right in front of me at the table.
It was my own initiative to place them out of sight.

During the meeting I found myself talking to her, as I got more response from her than from the person who was leading the meeting.
Now and then she took notes, no shorthand, but long sentences.
I haven't seen her transcript, but I'm sure it's a summary, not something that enables me to confront someone with what was literally said.

Maybe I sound a bit old fashioned, maybe I should perk up the name of my function too.

Autism manager?
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Sunday, June 27, 2010

Cancer education is a job of parents too

It's quite a while ago that nationwide campaigns addressed the signs of cancer.
Even rare cancers were mentioned, like mesothelioma cancer, which is caused by asbestos.

People are still afraid of cancer, and instead of doing everything to prevent it and seek medical attention when they don't trust their body, they just stick their heads in the sand and act like nothing is the matter.
This giving cancergrowth free reign and making their own fear become a self fulfilling prophecy.

I think educating your children about cancer, prevention and the need to take part in screenings is part of one's job as a parent, as is educating them about the signs and signals, and about the advances science makes in diagnostics and treatment.


Never be afraid to take action when you need to.
There's help available, so use it.
And when they find nothing they won't think you're stupid. Not at all. They'll be just as happy as you are that your signs were only false alarms.
.
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Saturday, June 26, 2010

Letters From the Sky



1. Do you believe that we will ever be contacted by beings from another planet?

Yes, why not?

2. Have you or a family member ever traced your family tree?

Yes, I did when I was at school and a couple of years ago someone contaceted me who had done the same.
The guy asked comments on his notes. I gave him the right date of my birth, and the right day of the wedding of my parents, but he said I was making mistakes.
Huh? About my own birthday? Or about the day my parents took the vows? Well, they have the photos with date and the marriage booklet to proof I gave him the right date.

3. Did you ever consider an acting career?

Yes, no problem.
Come and discover me.
I would do well in "As the world turns" as the sister of Lucinda. LOL!

4. What is the funniest situation you’ve witnessed in a religious setting?

Can't think of anything.

5. What's the first movie you remember ever seeing in a theater?

It was either Bambi or Rintintin.

6. What's the most difficult confession you've ever had to make?

The confession to myself that I married the wrong guy.

7. What is a city that you have visited and hated?

I didn't hate any city, but when visiting Paris I didn't like it very much.
Maybe because the company wasn't very interesting.

8. Has anyone in your life been "they one who got away"?

What do you mean?

9. Why do you think the 10 foot duck walked into the bar on Thursday Thunks?

I guess because they didn't understand the questions posed in Thursday Thunks of the week before.


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This afternoon in the shopping centre

This afternoon we popped to the shoppingcentre.
To be honest, it was mainly because one of the new shops has the most amazing airconditioner. The temperature outside was so high, that real cold running on our backs was the best feeling ever.

Ofcourse we were not the only ones with this idea, so it was crowded in the shop.
So many people had to pay, that the digital payment system broke down.

It was not the first time the that shopping centre, but it was the first time that a shop owner organised a special cue for credit card processing.
As we had a credit card somewhere in the dark depths of the shoppingbag, we took the cue and we had the card just in time, because that cue solved itself so fast that it took far less time than the usual digital payment.
The shopowner had a handheld device and processed our payment within a few seconds.

Because we were the last we stayed talking and he explained that it was the first time he used the device. Well, he'd better make it a regular payment system.
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Friday, June 25, 2010

Bad article

Some opinionated articles or columns are so stupid, that they hardly deserve readers.

Take for instance the tekst of Malou van Hintum in The Volkskrant of today. (I'm sorry it's dutch, but for those who are able to read it: look here.

She states that 10% of the grown-ups are problem drinkers.
She doesn't tell the reader where she found the percentage or if it's her own idea.
But who cares?

The dangers of too much alcohol are kindly put into nice examples, even including the prime minister who enjoyed his demissionary status and held a glass while wearing an anti drug T-shirt.

And then she jumps right to Benidorm to paint the picture of drunk young people, and ofcourse all parents are suddenly problem drinkers who have caused the binge drinking in these young people.

Well, let's first say it's great she doesn't drink. Not a glass of wine before dinner, or during dinner, no beer (ofcourse not!!) during hot summer evenings, no rum-cola and certainly not these great tasting bonbons with perfect chocolate and a drop of alcohol.
I love people who are perfect, because they're such a perfect mirror to reflect the person I am.

In this case. I'm one of the 90% of those who don't drink too much.
In fact I hardly take a drop.
It's not that I don't like the taste, or can't bear the smell of a good whiskey.
Me oh my, I like to have a long restful evening with a good glass of porto, or a dynamic evening with the bagpipe band, drinking wiskey and tasting first class salmon.
But it happens so seldom, that it's almost 2 years ago I had my last drop.

I'm happy my children don't drink either.

Otherwise the writer of that column would have blamed me for my drinking offspring nevertheless.

Now I can think she wrote those few sentences in a hurry.(Easily earned money)
It's not worth of a person who studied politics, wrote for some good papers and even worked as editor and headeditor of some university papers.

I certainly wouldn't have lowered myself to that level and would have kept that text all to myself.
But maybe that's why the youth are such a bad writers.
People like her set such a bad example in one of the most read papers of the country.


.
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New bathrooms

The school of the girls is renovating and rebuilding.
It's inconvenient, because of the noise.
But now the weather is so outstanding the huge park near the school is the perfect place to have lessons "the african way". Under a tree, around the teacher.

Today I had a look at all the works at school.

They were rebuilding a classroom. New walls. Everything.

At another part of the school the old toilets had been removed, and Toto toilets were installed. New tiles were brought in just when I had a peek and I have to say that the person who made the choice did very well. Instead of the square tiles we all know, I saw rectangular ones in a wonderful pale blue colour.

One of the workers said that in case I wanted the same I should have a look online, as the Toto products are on offer. One can save up to 40%.
I must have looked kind of surprised, as he went on telling me that he and his wife decided to redo their bathrooms too and were quite happy with the ideas he brought home from school.

Wish I had the money right now.
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The Continuing Story - activation


It was a good idea to try to activate my autistic son with the help of a social work student.

This week they went to a place where he could go and spend his time during the day.
Not to look, but to have a drink and just get an idea of how it feels there.

To my amazement he liked it there.
Ofcourse we all were lucky they were there at one of the most quiet times of the year.

But we haven't told him that.

His "hour-away-a-week" had two goals: to make him leave the house and see a bit more of the world within his own limits, learning to trust someone else outside the family, and give me a few hours to spend the way I like.

Well, that last part didn't work out.
I've spend the hours cleaning his room and stuff.....
.
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Acne

Yesterday I had a good talk with the girls about looks and hygiene.
They were worried a classmate was not taking proper care of himself and we talked about a way to bring this under the attention of the right people, without any judgement.

Then we talked about acne.

I'm not like my mom who told me my acne would disappear as soon as I had my first baby.
It didn't. The only difference was that I didn't take the time to worry about it anymore.

In those years we didn't know much about treatment for adult acne. We kept our faces and body as clean as possible, and I didn't use any cosmetics at all.

The girls now know so much more, and they're able to advice others about proper acne care.
Ofcourse it starts with being as clean as possible, using the right cleaning milk in the evening to remove any make up and daily dirt and then the right cleaning lotion to remove rests of the cleaning milk.
Both girls use something else, as they have different skins and they even adviced me about my face. Giving attention not to recommend anything with harmfyl ingredients and preservatives.

It remembers me of the times that my three nieces were hairdressers and lnew everything about haircare.
They made their profession of their hobbies, but my girls have different ideas about the future.
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Thursday, June 24, 2010

Summer weather

Yesterday the weather was amazing.

After the stress caused by the report (see last post), I decided that even though other people let me down, I wouldn't let ME down, and so we went to the shopping centre for some retail therapy (which was great as we needed things for the girls like notebooks and such) and we even caught a taste event with.... salmon.
Oh, it was so tasteful and we clearly enjoyed it so much that we were invited to take another piece. Great!!

The sun was burning a lot, but in the shopping centre the temperature was absolutely right.
When we came outside we didn't know how fast we could get to our bicycles and leave.
A warning was issued that it was the second high level of sunburn danger. Well, I could feel that!

At home my jaw hurt like hell again.
It's a week ago that the dentist tried to remove two roots and succeeded in removing one, and part of the other.
The hole left in my jaw is large and causes constant pain, even though I'm on painkillers.
So being late in taking them was not clever.

The girls were having dinner with a friend at their home.
By the time we had to fetch them the pain was bearable again and I enjoyed the ride past a lake and under huge trees, past the fields and in the soft breeze.

On our way back we saw a huge airballoon hanging half an hour at the same place.
In the higher airlevels there was no wind, it was announced yesterday and they were so right. LOL!
I wonder where they landed, maybe the one of the cityparks?
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Wednesday, June 23, 2010

Sick organisation

My friends and regular readers of this blog know that the child protection forces stepped in my family and started accusing us of bad parenting.

As we have the legal right to make changes in the report and have additions filed, I requested the report.

Not as it of use, as the report is long with the Child Care Investigation Bureau and already acted upon.
In fact they're ready with the investigation.

But as they take the conclusions of the first report as part of their own report, I had to ask the first one.

It arrived today.

I haven't read it all, but I'm all through the roof.

Let's say I think they're creating a basis for a court case and they're do it with lots of experience and an evil mind.

Let's view a few items.

My children are put down as my children, but they're not put down as full brothers and sisters, but as half brothers and sisters.
I have never ever slept with anyone but my husband, I'm furious.
I feel like DNA testing them all for parenthood, and I sure will suggest them to do that.

Another item is...I can hardly write it down without crying:
They want to accuse me of child abuse.

I feel so rotten, I can't tell.
I've never laid a finger on my children, I've always cared that I would never say anything that would lower their self esteem or anything else, and even though I can be mad at times, like anyone else, I never direct it to the children. In fact, when I'm mad I always clearly state why, and it's over in no time.

It turned out that the first investigator has been mailing my daughter, trying to manipulate her to go to the police and report us.

It really makes me sick.

.
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Tuesday, June 22, 2010

No empathy? Compassion?



Yesterday was the longest day, well, it sure was a busy day.

Because we're piling disappointment after disappointment about the school of the girls we decided it was time to move on.
Now is the best moment, because they're moving to different schoolkinds and levels.

So I contacted the school I value most and know best and it was told we should be fast with filling in the application papers. We would hear if there would be a place for them not before the last week of school and maybe even the first week of the vacation.
Well, we could live with that.

So we got the forms, and yesterday the girls brought them to the school.

There they heard there was no place for them and the forms were torn apart in front of their eyes.

!!!

What is it with people nowadays that they can't even take the feelings of other people into consideration?
Is there some radiation in the sky or pollution in the food which makes all empathy and compassion disappear?

Why don't people even care for the feelings of the girls?

They could have told me they wouldn't even consider placing them on friday, or they could have called me after saying thank you to the girls.

That behaviour wasn't in line with how I know that school, so I guess even there standards about behaviour are lowered.

Am I getting too old?

I hope I'll never get used to people behaving as inconsiderate as them.

.
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Monday, June 21, 2010

Manic Monday #210



As an adult, what is your favorite thing about summer?

The flowers, the fruit, the birds early in the morning, and the stars late at night.
No coat, no cold.

What was your favorite thing about summer when you were a kid?

Playing in the woods during seemingly endless afternoons.
Working with my gram in the garden en visits to my aunt drinking lemonade on the stairs to her garden.

In 2010, it will be the summer of _______.

Don't know.
A lot is going on which should be finished soon, unless people want to lose sight of the human aspect of life and want to indulge themselves in a powergame.

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Sunday, June 20, 2010

The Continuing Story - small changes

A family like ours has a huge potential of bouncing back, but can nevertheless be stressed too much.
Like in a chain, the weakest link will snapp when the chain is stretched too long.

My autistic son was doing so well, that he invited someone over to celebrate his birthday.
It was a huge step forward for him and we all enjoyed the presence of the student in social work who meets him once a week for an hour outside the home to activate him.

It was a real joy to celebrate his birthday in a new way.

With the ongoing events, the stress caused by it, and the busy time with each day at least one appointment for me, I knew the chain would snap.
It was not if, but when, and how often and how serious.

I've stopped preparing for it, because I know how I'll react and I sure know how he'll react on certain situations.

He had an appointment with this student in social work for his weekly small event.
Usually it involves a short walk and sitting down in a small restaurant and drinking something.
He knows how to behave in a restaurant, but he's sensitive to noises, lights and smells, so it's a new adventure for him, each time a new one.

I was ready to leave with his brother to his first meeting at a new school to apply for a place.
His things were ready.
All lined up: trousers, socks, belt. Polo. Coat. Money, bustickets, ID, phone, doorkey.
He himself was ready to dress and leave.

We were leaving.

He was OK we would have to go about 10 minutes earlier, he knows how to lock the door.

Nothing was unsaid, nothing not ready.

And there it happened. Out of the blue he suddenly was stressed out. Didn't see his belt, which was right in front of him.

I always leave at least one bus early, so I had time enough to calm him down.
But like always the stress had accumulated inside him and here it was: unlabeled, uncontroled, making him afraid for his own emotions, chaos in his mind.

This time I could calm him down, but with the unwanted result that he cancelled the meeting with his buddy, the ever kind social worker student.

We were just in time at the meeting at school.
My other son was accepted without any problem.

At home I was welcomed with many sorries.

This is what happened the same way a few years ago, when stress mounted too high at school and he couldn't cope anymore.
Autism is a silent killer of plans for the future for many kids with an autism spectrum disorder, and so it is for my son.
That time he went into regression and it took me almost 3 years to get him on top of it.
I could, because the flexibility of puberty helped me to influence him in a positive way. He tried to define himself while comparing himself with other puberty driven young males, so I could use that to built him up again, pull him out of his 8 year's mind, through 12 years, to the 18 he is now.
Each thought, each gesture, each moment... one by one, step by step.
An exhausting struggle of motherhood to conquer autism in it's core.

Now he's almost out of puberty, the rigidity of classic autism has gained a firm place in his being. He's a kind person, but the balance of his identity always trembles.
He looks rocksolid. He's huge in length and volume. His voice is heavy and it wouldn't be a problem if he would develop it to sing. I'm sure he'd do well.
But behind the solidity sits a small boy, overlooking the wide, wide world.

Right now he's doing well again.
Had a good laugh yesterday with the girls about something funny, gave a compliment for a nice hairdo, took 20 minutes to decide what he wanted on his bread, and made me a cup of coffee.

But I see his balance trembling.

And I hope those who want to judge my motherhood will see that I'm a good mom, made the good decisions and will leave me to do my job the best way I can. Learning something every day, observing, registering.
Oh, I've made my mistakes, but I've learned from them.
I know it's easy to judge people, especially with a firm set of requirements in your heads and a fixed frame of mind to observe families.
But we're different.

Autism doesn't rule the family, like one of you stated.
It's accepted as an integral part, like the individual characteristics of the other children are.
Drawings are on the table, schoolbooks, beads and more.

We know our strengths and our weaknesses.
We're aware of them, each day more than the day before.
That's why we move on, enjoy each day as a new one, living the wonderful moments like we're experiencing a miracle. Incoorporating our problems in the past, while keeping the lessons we've learned.

I hope none introduces so much stress that my son falls in regression again.
He's beyond the age of flexibility and determining himself.
I'm sure you won't be able to help him grow. You can medicate, institutionalise him, isolate him when he displays behaviour you don't like or can't deal with. You can take his family away, his reason for living.
You have the power to destroy his being, and leave him as a depressed small child, apathic in the light of the world and his own future.

Don't tell me I haven't warned you.

I can teach you how to observe, I can teach you tricks, but I can't teach you the power of a family to raise an autistic boy and to make him reach out to the world and grow.

So see us the way we are and leave us to work on the future of the children.

Lift the stress instead of increasing it even more, and you'll see my son grow even more. When you watch carefully to see the small changes.
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Saturday, June 19, 2010

Jumping Someone Else's Train

saturday9

1. When was your last train ride?


Last week, when we had the talk about our parenthood.

2. How many foreign countries have you visited? Tell us about one.

France (short)
Italy (Liked it. The dolomites were wonderful, pizza good and people kind))
Austria (loved the mountains.)
Germany (Nice nature)
Belgium (our neighbours, like Germany)
Luxemburg (nice nature too)

UK, all parts.
Those who know me know I consider the UK as the place to be.
I love nature, archeology, history,m the language, everything.

3. What do you always take with you on vacation?

Lipcare and a cardigan

4. Tell us about something you've lost recently.

Can't remember I lost something.
Most of the time when I can't find something it appears again.

5. Do you prefer action packed vacations or relaxing ones?

You mean sunbathing? I don't like that.
I loved climbing mountains, so I hope to be able to do that again.

But when I'm too old for that I would love to find a way to enjoy nature and to look around.

6. How long will you wait in a check out line before abandoning your purchases?

Depends. But I don't like waiting that long.

7. How old do you wish you were?

21.
Old enough to be taken a bit serious and young enough to have a whole future.

8. Do you consider yourself kind?

Yes, I'm a very kind person, but I've learned to be very analytical and critical too. Even when I smile, do people consider critical remarks unkind. That's how people are.

9. Tell us about your tattoos. Or if you had to get a tattoo, where and what would it be?

I don't have a tattoo, bit I've always wanted a bracelet tattoo near my hand.
I haven't found the right design yet.
Something art nouveau, art deco, with a lotus perhaps.

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Friday, June 18, 2010

lazy friday

Today was the first day in weeks without any appointment, so I decided to move almost all matters to the background, and handle just one matter.

Good decision as the place of the extraction in my mouth was terribly painful and causing problems.
Because I was waiting for a phonecall, I mailed the dentist for antibiotics, so I wouldn't have to travel by bus through half the town to get to the dentist on call this weekend when matters would get worse.
I guess he didn't read his mail anymore.

I managed to take care of necessary things in the home. Cook dinner.

But when we were watching a movie on TV I fell asleep and slept the rest of the evening.
I'm OK with that when it promotes healing.


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Thursday, June 17, 2010

Discrimination - update




So yesterday I informed the schoolleader about the assumption that we're members of a sect and the resulting discrimination of my daughters.

Today I got a mail from the teacher who made the assumption.
A mail with an excuse.

But only to us as parents, and it sounded like someone had dictated her. In fact her language was so far below standard that there's no other explanation.
She also wrote some more things, but nothing that even suggested she took responsibility for the almost two years my daughters had a rotten time.

I replied that I thought that a mail was not enough in this case, and there should be a talk in person, mainly with the girls, as they have been hurt worst.
(Which was kind of neat, because I thought that she'd best offer us a 3 month's tour for the whole family around the world).

When the girls came from school it turned out that she'd spoken with one of them and had tried to talk her into believing she did a lot against bullying.
My daughter replied: "I haven't experienced anything of that."
She sure didn't hear any excuse for telling the world we're members of a sect.

In the meantime the schoolleader had replied: according to him we had an appointment with the coördinator and he referred the issue to him.

Indeed, the coördinator suggested a date, but we didn't make an appointment yet, because I thought I'd better cool down before replying.
In the mail the guy stated that we'd best forget the issue and move on.

I think he forgot that the school informed the organisations who are investigating our family to see if we're fit parents that we're members of a sect and gave a description of one of the girls that didn't fit the picture.
So what is just a dull mistake for them has huge implications for us and can even result in the girls taken away from us.

Tomorrow I'm going to suggest a talk between the girls and the teacher, with someone from outside school to make it a fair talk.

And I'm going to report the discrimination.
Not giving the right example to the girls by not taking responsibility is unbelievable!

What do you think?
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Wednesday, June 16, 2010

Discrimination!!!



All here at home were amazed about the school stating we're members of a religious sect.
Ofcourse we speculated about who brought the ridiculous idea into the world and we had our ideas.

The vader of the children saw the coordinator at school and asked if he knew that we were members of a sect and the guy said "Yes". He got a laugh and was told that was untrue.
But how many more people do we have to go to?

One of the girls confronted her teacher and she said it was her idea.
No apologies, nothing.

We waited until 21.00 hours and then filed a complaint to school.
We're thinking about bringing this to the attention of the anti-discrimination agency, because during the evening more and more memories of the girls came to the surface and they all pointed to one direction.
Sickening!!!!!

The visit to the dentist was a different story.

He managed to extract one root, got one side of the double other root out... and used a lot of power to try to get the rest out, but he didn't succeed.
The root had grown into the bone and was too deep in the jaw.
So he decided to leave it there and hope it would be overgrown by bone in the future.

No implant possible because of that.

My jaw is swollen en very painful, even though I'm on heavy painkillers.
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Tuesday, June 15, 2010

another huge mistake



The meeting yesterday was very interesting.
Turned out the coordinator didn't recognise my daughter in the description either.
And he started to tell us it was a description of a moment, and such.
Yea.
So I made clear it wasn't a fun thing, but a report about a child which can have very farreaching consequences and he got a bit pale.

He told us he would ask for a better description and send it to the organisations that are dealing with it.

Today we had a meeting at one of those organisations.
They took us, parents apart, and had a talk with each of us.

It was a good thing to talk with someone who didn't judge, even though there was nothing bad to talk about.

The matter is in their hands now, so we now have to wait for the result.

One very interesting thing popped up.
They thought we were members of a religious sect.

I was flabbergasted! Don't think buddhism is a sect. :)
Turned out it came from school.

So the person who so badly described my daughters also has some strange ideas about our religion.

I mailed the contactperson of school and suggested that maybe the school should retreat from being expert on information about our girls.

Tomorrow two deep roots of the broken molar will be extracted.
The dentist said it'll be a difficult job.
Well, I hope it's accomplished soon.
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Monday, June 14, 2010

Monday thoughts half june 2010



Yesterday the girls had a balletperformance and ofcourse we went to see them.
Friends welcomed us and it felt like diving in a warm bath.
After reading so much untrue statements about our family and me in particular and finding ways to object in such a way that at least doubt is created and the truth can be stated, the familiar world of ballet was a homecoming.

Before the girls danced a group of grown ups showed how a lesson is conducted.
The teacher and I fell immediately into our old habits of exchanging glances, which was fun. It's not that we exchanged messages about other people, but she knows my habits and emphasis during dance, and I know hers. I see the slightest discrepancy from perfectionism, and she wants to be perfect, but knows her special weaknesses too.
Balletfriendships never die.

The music and the movements were so inspiring that I nearly asked her to have me in the group too. Maybe I will when our lives are not under scrutiny any more.
I asked her for the music and I have so much inspiration in my head and body that I'll come up with a choreography in no time.

The girls danced very well.
This thursday will be their last dance together on stage. Then they'll move to a different group.
One of them will be taught by another former teacher of me, who loves to give her lessons. And I've seen in het eyes that she has plans for my daughter.
As a former balletacademy dancer mom I won't stand my daughter in the way, but I'm not jumping from joy when she would end up in that terrible world of competition.
I've been there, I've seen it there.

Right now I'm having a cup of coffee.
The comments and correction on the first report about us are ready.
There are moments I wish I wasn't the psychologist I am, and I hadn't the experience in teaching observation, assessement, writing reports and conducting research.
At a certain moment I told myself to stop, close the whole lot and send it.
No matter how it looked, no matter whether it can be ordered even more.
I've stated my case.

Whatever wrong a person states about me, it can't take away the person I am.
To call me irresponsible without any objective facts to back that up...
I know I'm very responsible and when someone would listen I could motivate each decision I take.

Well, it's interesting that someone can describe me as a person and mom, and the rest of my family, after seeing us 2 hours at most, without even having a degree in psychology.

Even an experienced psychologist or psychiatrist doesn't give such an in debt description after such a short time.

Well, I've learned about myself again.
I used to feel awful while crying with other people (close friends excepted), but now I just didn't care.
I kept my emotions in the moment, and crying felt adequate in the light of the helplessness I felt. Someone was judging me and my family who didn't even want to listen to what we had to say. She had some preconceptions in her mind, and some unwritten checklist, I assume. And she didn't even want to understand why we didn't fit in the picture of a regular family.
How can we?

Well, when her workleader takes my comments seriously she'll send her to re-education at least.
But I doubt it.
It's unbelievable that people who have so much power to destroy a family can deliver such sloppy work.

In the meantime we're doing well, as everyday activities define the days.

Today we're having a talk at the school of the girls.
We filed a complaint against the two responsible teachers because one of them gave a completely wrong (and sickening) description of my daughter to the organisation above.
It's untrue and I'm sure it's given to cover up their lack of activities against, their negligence of bullying.
Well, those who read my blog know how often I wrote about that.

Their opinion is opposite of that of my daughters therapist, and when they keep claiming they're right I'll suggest the therapist obeserves my daughter at school.
Otherwise they have to correct their opinion towards the organisation. Pff... don't expect them to be willing to admit a mistake.

The school propagates respect and acceptance of the undividuality of people. Interesting.

Well, I'm off.

Have a nice day!
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Sunday, June 13, 2010

How?

.
How do you defend yourself against a person working for an official organisation who writes a pile of crap about you?
.

I've written a comment on the first report on us and it's more than 12 pages long.
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Saturday, June 12, 2010

Goodbye to You

saturday9

1. Have you had to say goodbye to a good friend or lover because they were moving?

Well, in this time of computers, phones and fast travelling moving needn't be a problem, unless it's to another country.

So when one of my lovers moved, it was just a move. I saw him the next saturday.

What made an impact was the move of my study friend, Hans, to america.
He was not a dedicated writer of letters, so it took 9 years to see him again and to experience the friendship was still there.
I'm sure it's still there when we see each other again.
He's moved from america and I assume he's in Belgium now.

2. Have you ever wanted to use personal information about someone to sort of "blackmail" them? If yes, tell us about it.

No. Why? Blackmail? Huh?
I have looked up information about someone to see if the person indeed had been at a course about autism.
It confirmed my intuition and thoughts.
I didn't blackmail her, but calmly told her that by stating to have followed a course, whereas the truth was she hadn/t, she made herself only look stupid because she suggested she wasn't able to put the information and exercises of the course in practice.

3. What two things influenced the choice of your present job or to stay at home?

I've chosen for my children, stay at home, because I think that children need a mom at home more than a mom at a job and an empty house to come home to.
I also think that each period of life should be enjoyed as much as possible, so motherhood means for me being a mom, not being someone striving to have a carreer.
I thought that motherhood is a challenge and an opportunity for personal growth too.
And I will only be a better psychologist when I've had the chance to study child development in real life and not only from books.

4. Do you like warm weather? How warm does it get where you live? What is the best way to spend a hot, summer day?

I like spring best. Warm weather is not really what I like, as it gets very humid here. The past days it has been about 25 tot 27 degrees celcius, but it can be higher in summer.
I try to forget it's as hot as it is, so I'll do things that help me doing so.

5. What do you find "hot" in a man/woman? What is the first thing you notice about someone who is hot? Do you ever think of yourself as hot?

These are not terms Im thinking in.
When I meet people I'm not focussed on their looks, but on my intuition.

6. Are you quick to anger? How do you react when you are angry or frustrated? What do you do to cool down?

No, I'm not easy to anger. Not at all.
When someone or something makes me feel irritated I react rather analytical.
Where does my irritation come from, why does it irritate me?
Most of the time that's enough to stop the irritation.

I'm rather honest in my reaction: "I feel I'm irritated, because..."

Cooling down: most of the time understanding is the perfect way to deal with it.
Blogging helps too, or talking to someone else. When that doesn't help my highland bagpipes sound it out for me. LOL!

7. In your family, who is the least like the rest of you?

We're all unique. Haha!!

8. What are a few great books that you've taken along to the beach or on vacation in years past? If you aren't a big reader, what do you do to while away the lazy hours?

No vacation....
I like reading, but I'm OK with short stories or books that enable me to read a small piece and think about it.

Lazy hours are not often part of my life, but I like doing all sorts of things. Gardening, writing a bit, doing something creative.

9. Do you like going outside during a thunderstorm and watching the lightening?

Yep!

But the past years lightning has become more vertical and as we live not too far from a like I'm always careful.

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Friday, June 11, 2010

uniqueness and conscious parenting


All of my life I've been trying to stimulate the uniqueness of myself and my children.

Ofcourse it's also important to learn how to fit in, adapt and be happy to be part of a larger social entity.
To feel at ease when people look at you, knowing you look like others and people value you for who you are.
Belonging to a group means sharing in their rules and regulations, their opinions and maybe even future goals (like at school).
Internalising moral standards, showing age relevant behaviour, developing non verbal behaviour and all those defining characteristics of a person is better be done in a group, like a family, a group of trusted friends and a class (when standards are set properly).

But a person is more than part of a general concensus, the single grain of sand on a beach, or a clone of those around him or her.

We all have an aspect of uniqueness which defines our identity too, which gives us a sense of self, enables us to find out which our talents are and develop them.

Because of the autistic children in our family I've realised how important it is to accept the uniqueness in ourselves, to be at ease with it, and to find growth in that uniqueness too.

It's the double task a parent has, but due to the way society deals with people who are unique, many parents focus completely on the common qualities of their children.

It's quite understandable, as this is a time where the masses streamline the processes in society. In a way they facilitate the growth of society.
Everyone goes to work or school in the morning, enabling factories to function at full potential and giving teachers the chance to teach at the benefit of most.
Optimal use of energy. When all noses move the same way there's no disruption of movement.

Sometimes it's even forgotten that the uniqueness of people make life worthwhile. The singers, actors and musicians, the designers of furniture and clothes, those who want to find a cure for cancer, develop toys... numourous people who dare to think outside the prescribed lines help us to develop our own identity, because they make us think, consider if we like something or not, or even make us vent opinions this describing the boundaries of what we want or not.

I think it's a true mature person who's able to see the ordinary and the uniqueness in himself and can embrace that diversity in others too.

During the years I've found one huge obstacle though, one huge issue that makes me unhappy because of that diversity of characteristics which define my identity: I don't fit in theories.

My mother taught me that when I had small children my house should be tiptop when my husband arrived from work, so he could sit down, read a paper while I was preparing our dinner.
When he still worked in town he arrived at home at the time she mentioned, but half of the meal was already prepared in the morning or early afternoon, and the children were playing all over the place, enjoying themselves to bits. I thought a father should enjoy his children, see how they played and preferably engage in playing with them too.

I had joy finding my way through motherhood, using my creativity to guide them and teach them.
My children hardly ever moaned when they had to go to bed, wouldn't try to find excuses to stay up late, just because they were aware of their own tiredness, and they knew that sleeping would make them more energetic to play the next day.
Oh, don't think they didn't test their boundaries. They did.
But with 6 small unique creatures I needed to chose my battles and invent ways to get things done without too much trouble.

So at the famous age of two when the word "no" seemed to be the only word in their vocabulary, I would tell them that I didn't expect them to go with me, which resulted in them eagerly telling me they would, accepting shoes, coats and the whole toodoo and going with me without problems.
Their souls weren't scratched, nor was mine.
I allowed them to say "no" plenty of times, chosing their battles, but I guided them towards the battleground, where they could say "No!!" to an apple and eat a banana and an orange instead. I though it important they went through that stage of development the same way as other children, but in a way that it wouldn't suck away all my energy and I would end up near half dead when they would finally be asleep.

Sometimes mothers of autistic children ask me how I can live a life with 4 autistic/unique boys and two normal/unique girls, dealing with all their difficulties like dyslectia, schoolproblems and all the other things.
My advice always is:
  • know what their stage of development asks from them and you.
    Investing in reading about that and talking with other parents pays off very well.
  • Set standards.
    Now puberty has gained access in the house there are rules: no smoking, no drugs, no alcohol, school first, healthy eating too. To mention a few. But also: when you're angry sit down and ask yourself why and if it's worth it to pour your emotions all over the place.
  • Move the battlegrounds to places that fit you. I'm not going to accept to be pulled in an argument about the beaviour of someone else, but I'm OK to discuss the limits I'm setting to buying books and hobbymaterials.
  • Setting limits and saying "no" is part of my job as a mom, as is being nice and being a role model. Don't be caught in the "no's" or in being a boss, but enjoy being able to guide a human being towards adulthood. Parenting is fun, is dedication and is being responsible. When you do it well, you'll enjoy personal growth too and you'll get to know yourself better.
    When you perceive parenting that way it's not a burden that exhausts you, but an interactive joy which gives you energy.
  • When dealing with autism, know your child and set goals in a realistic way. Enjoy the small steps forward and forget the fallbacks. When you focus on the positive you won't see parenting as a burden, but as a journey of small expectations.
    Aren't the flowers beside the road far more interesting than the holes in the middle of the road?
  • Take time to be in the centre of yourself, to be yourself, to feel the peace inside yourself, or whatever words you use to experience some rest. Stay the person you are and don't forget that you're a developing person too. Each stage of development of your child is a new stage in your development too.
    Parenting is a real journey and it's fun, even though some times can be hard.
One of the main problems I face as a parent are the projections of other people on our family.
The comments of how difficult a life I have, are plenty.
"I couldn't cope", is what people say.
Well, how do you know when you're not experiencing it in real life? I thought I couldn't cope too, but I can.
It's not that I don't take matters seriously, it's that I've learned where the forces are which move us all in a positive way.
We love each other, we care for each other, we enjoy it when something positive happens to someone.
This outweights everything else.


So those who want to evaluate our family and want to find fault in my mothering: don't project your ideas into our situation, don't use theories, because there are no systemtheories for our family.
But accept that we're as strong as we are and enjoy seeing that.
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Thursday, June 10, 2010

In fact it's their basic right to be trusted.



Terrible humidity, 25 degrees celcius.
Thunder and lightning and loads of rain expected for the night.
Guess a sauna feels like it is now.

But the elections are over and we now have to wait which parties will form a coalition and who will become prime minister.

Today has been a day of filling in forms and getting things arranged for the kids.
More meetings will follow, but I'm glad 2 of the boys get opportunities for their future.

I can arrange meetings and such, but they have to use the opportunities.

I also got a call from the psychiatrist of 2 of the boys.
Thought he wanted to talk about one of the boys, as we had to cancel yesterday's appointment.
Instead he stepped over the boundaries of his profession and grilled me on some aspects of the case, without knowing the facts.
It's interesting to see how even people who are thought to be able to carry the responsibility of putting objectivity above subjectivity, are stuck in their own frame of mind and project their own ideas and phantasies in a situation.

I'm not going to say too much here, but when he can't handle a situation that's his life. I can deal with my life and I can even provide a theoretical basis to back me up in the love and care I've given all my children when they needed it.

He tried to put guilt on my shoulders, but I've done nothing wrong at all, and all of my children are doing well.
My autistic son even invited someone for his birthday, which is the first time in more than 10 years, and we had a great time.
On top of it the birthdayboy won a prize on internet. A collectors item of a game.
He didn't care for the thing, but he experienced the joy of winning something.
Quite a new experience for him.

It's not due to his psychiatrist, but to the effort of our family as a whole and I stand firm against everyone who wants to tell us we're not OK, just because they think they've heard that.

We're a special family with a huge potential to face the difficulties in life.
There are many theories to describe the dynamics in families and I dare to say that some of the main theories are not able to describe families with autism.
We can't be compared to a box with marbles, where shaking one marble means they're all shifting place. Some autists are stuck in their roles and at their places and thus don't behave like a marble at all.

We need new theories to describe families with autism, the dynamics of functional and dysfunctional ones.
Don't tell me my family is dysfuntional because your theory is wrong, but adapt to a better view by following your heart and by listening and looking well.

Give people the freedom to deal with life their own way, and accept and trust them when they tell you they're OK.
Even children have the right to say they're OK when they are OK.

In fact it's their basic right to be trusted.
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Wednesday, June 9, 2010

Hidden 100 dollars

For years parties of airtight closing boxes have been number 1 of relaxed shopping-evenings for women and a few occassional men.

When my children were young homeshopping of children's clothes has been an item too.
I remember sitting a whole evening looking at girls clothes when I only had boys. LOL!
All attending women got a pair of pink socks and it was good I'd kept them, as I got the girls to use them. Today, when doing some cleaning and tidying I've thrown them away.

Sometimes I hear women about lingerie-parties. Some parties are even completely dedicated to wedding or plus size lingerie.
The amount of money some women spend is amazing.

I think that wearing nice clothes makes one feel good, but wearing 100 dollars under a T-shirt, makes me think that the psychological impact of knowing there's 100 dollars hidden somewhere is much larger than the esthetic effect. When the T-shirt is in place, I mean.
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Tuesday, June 8, 2010

Why do people even think they can place themselves above others?



Another day.
Fresh rain was coming down in huge quantities when I left home for yet another appointment.
I was a bit afraid to fall asleep, because I've been studying a lot yesterday.
It was well worth it.

I reached the destination perfectly well, though.
... and was grilled about what people think is a mistake, but which isn't in buddhism.

Why do so many people feel the need to enforce their opinions on others?

The only result is that explaining to people and failing to do so, because they can't leave their frame of mind, makes me feel how different my way of dealing with life is.
Why am I able to accept the uniqueness of other beings, the authenticity of their experiences and trust their honesty, and so many others can't?

It's unbelievable that they even tell me I'm wrong accepting the illness of my child as illness, instead of stress because of the situation we're in.
I trust my daughter when she tells me that she doesn't feel stressed, and I trust my doctor when he tells me it's an abdominal virus.
And what to do with the other children in their group who have been ill with the same symptoms, and with their teacher who is ill right now?

Ofcourse I considered stress, that's why I asked her and took her to the doc.

Why do people even think they can place themselves above others?

Well, the appointment for tomorrow is cancelled for me and the father of the children (not for the kids).
So I took the opportunity to get some more flooring done, take a piece of furniture out and place the desk at another place.

I'm nearly ready putting things at their places again.

Elections tomorrow.
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Monday, June 7, 2010

Mindfulness in my life

Have you ever gone through the experience of looking back on your life and seeing the mosaic of experiences which seemed to be unrelated, merge into a sharp image?

I thought the way I was living was a constant lonely search of getting to know myself and others and how to be as much myself as possible be without violating the freedom of other people.
On my way I found certain things to be of utmost importance:
  • respect for other living beings and for nature.
  • not judging otherslaane
  • living intense, right at this moment
  • leaving feelings as much as possible in the moment, so there's a constant flow of enrichtment of the past
  • accepting that what happened yesterday doesn't need to influence the way I feel today, even if that was an experience that caused pain.
  • anger, guilt, jealousy, hatred, are unnecessary. They keep people from being in the here and now, so this moment is lost, because it's not lived,
and many more things.

Since I started reading about buddhism again it has been one interesting festivity of recognition.
There must be an important reason why I went this long path alone, going through some of the most painful experiences people can go through, whereas all the time I could have had a group of likeminded people to support me, great people and books to guide me, and lots of shoulders to lay my head on.

Each step I took, each stone I fell over, had a message for my life, and most of the time I realised that.
I was grateful for the daughter who died, because she made me so much more aware of the dust of time, the veil between us and those we long for, made me so much more happy with my other children. A happiness that was so deep within me, that even though I had to put up a fight against all the things parents of handicapped and normal kids have to face, I always knew things would be better. As all people grow in their own way, at their own time, and for themselves.

Life itself seemed to have taught me mindfulness, even though I can't deny my grandmom gave some very wise lessons which must have brought me right on track with my nose in the right direction.

People told my parents that they felt calm in my presence, like I radiated rest.
Yesterday I said the same about one of my daughters; isn't it interesting?

Looking back on precious moments with my children I see how much I lived with mindfulness and taught them to do the same. They took it each according to their character and abilities, but now they're getting older I see them doing the same with other children and even grown-ups.
Attention for one single flower, enjoying the smell of one rose, not bothering about tomorrow, but living life now as intense as possible.

I now know where that smile on my face comes from.

Many people commented on that smile, because it was with me even during dark days.
Now I know where that smile came from and comes from, and I cherish it even more.


Isn't it ridiculous that when we have important things to teach others we have to proof someone else with a diploma taught it to us?
In order to teach others about mindfulness I need a course to get a certificate and it costs 1710 euro!!! (I don't have that.)


........
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Sunday, June 6, 2010

Happiness, sun and pizza





Yesterday we had beautiful weather.
The official top temperature was 28.7, but it sure has been more at places.

Perfect to dry laundry, playing outside and just enjoy.

Warnings for pollen in de air and other dusty stuff were issued abundantly and with the cold I have it combined to nasty coughing, which was taken care of with ease with my inhaler. Miracles of modern science are never far away. LOL!

In the afternoon we went to the shopping centre, as one of the girls needed new summershoes. A slow motion girl handed out leaflets with a bag of tea almost without a facial expression. Just when I thought she might need something to drink someone gave her a cola. So I wasn't the only one with that thought.

My daughter got her shoes.
In fact she got two pairs which were on offer, and because it wasn't so crowded this saturday, they were still available in her size.
With a big smile on her face she left the shop and it stayed with her all day.
It makes me happy to see her that way. Not only because she was happy, but also because she was happy for some simple shoes.
I know some kids want the most expensive there is, want brands and who knows what.
She just wanted certain simple shoes, and she got those she wanted.

In the supermarket it was rather quiet too, even though the temperature was OK.
Nothing to taste at the entrance. But in the cheesecorner a girl was slicing Old Amsterdam, one of my favorites.
I had a look and she asked me if I'd ever had that cheese. I told her that it's my favorite and she said we could take pieces. And then told me to take a few more. Her big smile could have burst open the strongest safe, and the woman beside me with the cloudy face suddenly smiled too.
Such a precious moment.

Especially because later we were asked if we wanted some pieces of bread, with or without butter. The bread was good, but the lady was tired I think. She wasn't nice at all, and only after we thanked her and said goodbye, she suddenly remembered to mellow a bit.

And then the oldest showed up and it was decided he would come to have dinner too.
He was on his way to us to bring a pile of our favorite pizzas.
Either his supermarket made a mistake or they had to get rid of them. Instead of over 3 euro they were 60 eurocent each, so he'd bought a lot of them, but too much to fit in his fridge.

He had 6 different ones, double, so there was enough for all of us.
I was surprised by one with spinach, cheese and cream. Never had that one and it looked not nice at all. But the smell and the taste were delicious.

So out of nothing we suddenly had a memorable get together with good food, lots of fun and interesting stories.

That's how we are.
During difficult times the best comes out of each of us and we're generating strength and warmth, which generates even more strength and warmth.

That's why I believe in my family, that's why we can deal with a lot.
Many people think that autism is a burden, and sometimes when you read my blog I vent a lot and it sounds like an awful life.
But even without autism moms can have the feeling they're not able to get on top of laundry and all the other things. That's just one of the sides of being a mom.

I hate it when people think we're bended all the time by a load which is too large, because we're not.
We can deal with a lot and even though we're going through a difficult time, like now, we grow and enjoy life.

I hope those ladies will see that next wednesday too and won't add to our load.
Because each family system can crack under a load which is too much, and I don't want our family to be a case of study if it does.
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Saturday, June 5, 2010

If I Had a Hammer

saturday9

1. Are you handy with tools?

Yes, I am.
My father used to be handy too and he liked company when DIY-ing.
So I often stood looking at what he did.

2. What was the best thing that happened to you this week?

Someone gave me a buddhist amulet just because he felt like doing it. Not because he knew me.
I felt very priviliged and happy with the amulet.
It's beautiful and the fact that someone gave me a present... Thanks!

3. What was the worst thing that happened to you this week?

Those who have followed my blog and have read between the lines.
They're investigating me to see if I'm fit for a parent.
We've once had the whole investigation before we wanted to adopt.
Now we're in it again, but because someone reported us.
Since then I've found out that many autism families have gone through the same. With autism, families are not average. It needs to be accepted that we're very conscious parents, that a yelling child doesn't mean it's mollested, but that it has a meltdown, when an autistic child runs away it doesn't mean he's not treated well, etc etc.
It's frightening when people want to find fault, because we're not perfect.

4. Do you think you act your age?

At times. But which age do you mean? The chronological one?

5. Describe an item of clothing that has definitely seen better days but that you refuse to dispose of and still wear. Why won't you toss it?

OK, I'm wearing it.
Trousers. The fabric is smooth and stretching and it feels sooooo good.

6. What is your favorite summertime beverage?

Water

7. Have you ever lied about your age?

Not really, but I don't keep track of it very well.
So I have been a year older and a year younger.

8. What was the most memorable birthday party you've attended?

Of a child that wasn't sopposed to live anymore.

9. What is something that really frightens you, and can you trace it back to an event in your life?

"Them" deciding I'm not a fit mother and taking my girls into fostercare.
I've lost two babies, due to natural causes, as they say.
I know people can make wrong decisions, just because they're not able to see behind the theory or their own ideas. Theories don't describe it all, and all I can hope is that "they" are able to see that exceptions can be well functioning families and parents too.
People have described me wrong in the past too, but I never cared.
Now I've already been described in a way that isn't me at all.
It feels so desperate to be confronted with people who are not able to see a happy family for what it is.

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Friday, June 4, 2010

Dentist

Suddenly I had something in my mouth in the middle of the night.
My crown had come off, including the built up and the pin.

Me oh my, was I happy not to have swallowed it in my sleep.

I mailed the dentist and tried to sleep a bit more until it was time to call them.

Lucky me got an appointment the same morning, but it wouldn't be, the secretary said, with my own dentist.

When I saw the photo I knew that I really had a problem.
Only two very large roots, and hardly any molar left.
Nothing to glue to crown against.

Suddenly my own dentist appeared.
Pure coincidence he was at the practice the moment the photo was ready.

We agreed on what needed to be done.
He'll get the roots out himself in two weeks, but he warned me it won't be easy.

After the wound has healed he'll place an implant.

I need to have this done, because at the other side there's no possibility to chew properly.

Both me and my daughter have some inborn deformation of some molars and/or teeth.
I have some normal molars and teeth, but some molars are the little kid ones. The permanent ones never came.

Ca't say I'm happy with this extra burden.

On top of it most of us are dealing with a nasty cold. I'm one of them.
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Thursday, June 3, 2010

Healer heal thyself.

As an autism ambassador I've been able to help a lot of families.
Sometimes simple advice was enough, but there have been families that needed involvement of more.
A few months ago a famous human rights lawyer stepped in, and he was able to make professionals see sense and the mistaken review of a case by a social worker who hardly knew anything about autism was taken for what it was worth (nothing).
The family is now happy together again.

Helping another family is far more easy than helping your own family against reviews with mistakes.
Because you're not an outsider and you're part of the family system, you're part of the review, and suddenly you're not the expert and not the objective person anymore, regardless of that fact that knowledge about things is a rather fixed issue, based on science and thorough experience.

This week we received the review of the family which lead to the idea that our parenting skills should be examined.

I feel I'm fighting rather the same problem that came to a good end a few months ago, but now from the inside.

The review was mainly the projection of someone's own opinions and ideas into our situation.
A picture about me was sketched as weak, dependent on psychiatrists opinions, not able to see how my children are doing, etc etc.

I was shocked and in a way I still am.

And it's even worse.
She wrote down statements of my children which should represent their sayings which are not true and can't be true at all. Simply because we had some habits at the time which made it completely impossible to do something else too. (People can't be at two places at the same time. Not in the past, not yet, and I doubt they ever will be able to. But oh... how I wish I could divide myself up to two or three persons sometimes.)
She asked our doctor's opinion and instead of putting that in the review the way it should be, she manipulated the reader with her own opinion. In a way that's great, because my doc now knows that what I was telling him about my feelings was based on good observations.

I was flabbergasted reading it all, and completely shocked that she was putting so much subjective material in what should be an objective review.
Now I know why she was so agressive and impolite towards me, tried to force me into stating and doing things that are not me and which would harm my family.

Either she was aware that she would not be capable to write an objective report and she had to put things in that would make others doubt me which would stick in their minds, or she was jealous of my large family and the fact that, even though some times have been hard, I wàs able to cope (sometimes to my own amazement) and raise handicapped children to responsible grown ups.

Never in my life I've dealt with such a mistaken image about me and my family. It makes me feel alienated, strange, and even more secure of my own identity.
I'm confronted with someone who is at an important place in society and who's not able to write an objective, coherent report which is a good representation of the people and the family she described. Her incapabilities can destroy our family.

As her report forms the basic material for the review our family is now undergoing, I doubt the outcome.

Ofcourse I sat down and commented on the report.
It's been my job at the university to review papers of students, grade them, comment on them and teach them how it should be done better.

She wouldn't have gotten permission to start the next year with such a report.
I bet she knows it and that's why she bites so hard.

Again I'm fighting a system and this time I'm not sure I'll be able to beat it.
For the first time I lack that confidence, because this system has crushing elephant feet and we're just tiny beings.
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Wednesday, June 2, 2010

The meeting

Thanks for your support.

The people who came were friendly.

Their focus didn't seem to be as much our parenting skills as well assessing if the girls have a developmental delay.

School said that one of the girls didn't feel OK with herself and didn't team up with classmates as much as she should.

That's interesting, as we have spoken with the very same person who has said that. And us was told nothing, but that she's a very friendly and social child. That she did well. We only got compliments.

So we think the school's covering their back for not investing as much attention against bullying as they should.

Point is that both girls are twins and have received several exchange transfusions after birth. One of them even had minor surgery and a consequent infection.
They also had a few transfusions with red bloodcells.
We were told then that because of all that they could have hearing deficiencies, developmental delays and learning difficulties.

So even when they can establish a delay then it's not due to our parenting skills. Which are fine, otherwise we would have been under scrutiny earlier. We're nearly celebrating 25 years of parenthood, and have brought 2 boys with an autism spectrum disorder to their own place in society: one as an ITC expert, and one establishing himself as a photographer. Which is going better than anyone expected.

Maybe next week, during the next meeting, they want to make the point that parenting boys with autism is different from parenting girls without autism spectrum disorder.
Fine.
Parenting girls is so different. Take all the hair ornaments, the way they deal with their room, and all the other things, including the giggling, the long interesting conversations and all the other things that are girly and regular.

I think those who came here already had drawn their conclusions before they rang the doorbell.
During the conversation they stopped me talking as soon as I said something that fitted in their picture. So they missed important information.

Selective perception is hard to fight. I don't know if I can.

But I hope that they'll see things the way they should be seen.
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Tuesday, June 1, 2010

It's The Day

Probably the most important day of the life of my family today.
We were a happy family with challenges of autism and dyslexia, and we want to stay a happy family.

So let's hope those who come to evaluate us have wisdom and insight.

Dealing with a family with such diverse members isn't easy, but I can do it and I'm doing it well.
I've got my education and training, I've got experience of 24 years of motherhood, raised two to live on their own, and even though we have our ups and downs like all families, we're doing great.

All I can hope is that those people are able to see beyond the fact that we're not an average family.
Oh, in some aspects we are.
But autism puts a firm stamp on it.
Not always easy, but it's enriching too.

That some things are different doesn't mean they are not good. On the contrary.

Ofcourse things don't come easy today.

Tidying the last bits takes far too much time, because the children need their attention like any other day, and taking care of my autistic son takes a lot of my time. Changing the way I deal with him will only upset him.

I've hardly slept because I got the cough one of the girls had last week. And now a terrible throatache and a slight fever are standing in the way of feeling OK.
I knew something was coming as I was far too tired the past days, had a slight fever too and was nauseated.

But we moms can't be ill.

I won't cancel the appointment because I don't think it will be appreciated.

All I hope I'm well enough to have my say.

Thanks for your support.
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