Friday, April 30, 2010

It's Queensday

It's Queensday today.

It's a nationwide festivity in The Netherlands, with the Royal House in the centre.

The Queen visited two cities to celebrate her birthday with the country and her family was with her. They enjoyed themselves watching and taking parts in traditional games, tasting local specialities and listening to what lots of people had to tell or sing.

We watched it on TV.

One of the boys went to one of the free markets, where kids were selling their stuff.

He was amazed so many foosball tables were sold.
With a friend he played a few games on one and because they had so much fun they were able to help the seller to sell it. They got a nice present in return.

Isn't that nice?
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Thursday, April 29, 2010

Preparations for vacation

No, we're not preparing to go on vacation. Not yet.

But quite a few families in the street are.
It was like they planned their activities together, but in fact it was due to the enormous wonderful weather today that they all got their camper near the house to clean them.
It was fun to see people come out of their houses. So many people enjoyed working in the garden.

And people started to talk together again.
I heard one of the campers tell the others about rv repair, and at the same time the women were talking about the wonderful tulips we're having this year.

A lovely spring day.
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Wednesday, April 28, 2010

dependency on heating and hot water

It's interesting to experience how dependent we are on heating and hot water.
Our heating system broke down and we had to live a couple of days without hot water,followed by a few days without heating too.

Luckily the weather changed to high temperatures when it started to get really cold in the house, so all I had to do was open the windows and feel the hot air enter.

I'm not a person who can't face situations like a lack of hot water, but the children had a hard time adjusting.
We're no campers, so they didn't have to wash their hair under primitive conditions before.

I bet we've saved a lot of water this week.
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Tuesday, April 27, 2010

Very closed

The social worker was full of criticism when she visited us.
She clearly had standards in her mind and we didn't fit in the picture.

"Everything is very closed", was her conclusion. With the intonation saying that she didn't approve at all.

She didn't only mean the glass curtains in front of the window, protecting us from the piercing springsun's rays.
She was seen walking around the house and I was warned by neighbours and the boys for uninvited eyes trying to look behind the hedge into our garden and maybe in the house.

The evening before burglars had done their work in the street behind us, entering houses and sheds. So people were aware of strange faces.

I wanted to tell her that my autistic son is over-sensitive for touch and that he, like many others, doesn't like to dress up all day in fancy clothes.
But I didn't, as she probably would take it the wrong way.

She's on the warpath, trying to find fault in everything she sees.
She's the person who rather takes a child from home, claiming negligence, than understanding what life in our family really is.

I can't say more about the situation, to protect the privacy of the children, but I'm writing about my experiences as well as possible alongside them happening.
In my own language this time, so bringing the story to the world will be as fast as possible when the time is ripe.

In case you want to know a bit more about autism and sensitivity, body awareness and clothes go here.

.
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Monday, April 26, 2010

Manic Monday #209



If you could write your own bill of rights, what would you include?

For my country:
the freedom to choose the means of education which fits the abilities of the child in question, including homeschooling.

Homeschooling isn't allowed here, that's why my autistic son didn't get the education he deserved. He couldn't cope with school and the council representative used her energy to prove to me he could, instead of allowing me to prove which way of education would work for him.

I also would want:
the freedom for children to chose the person who represents them and their opinions in cases where professionals think they have to evaluate their parents.

Most children know very well if their parents are OK, and they should be able to have a full voice, instead of professionals tell them how to feel.
(Sorry, we're going through a rough time once again.)

What is going on in the world today that affects you the most?

There's going on so much.
So many people die from the force of nature.

Young babies die after their conception is forced in chemical ways.
I don't want to withold parenthood from people. Not at all.
But I'm not sure if people really looked at the risks and the feelings involved.

The death rates of babies here are quite high, even though we're a civilized western country and have high standard health care.
I think the high numbers are not caused by mistakes, but by ignoring the risks.

The consequence is that childbirth is medicalised and people lose their freedom to give birth at home after a healthy pregnancy.

Something else that bothers me to bits is the continuing increase of control over people's lives and loss of privacy.
We have to live up to be a certain average person, and when we're not it's wrong.

What do you think is the secret to a good life?

Love and surrounding you and your family with people who are caring and loving.
Not criticising people, but trying to understand them in their being.

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Riding boots

I don't believe in coincidences anymore.
Not really.

Sometimes the interrelations between events are hard to find and show themselves years later.

At other times socalled coincidence makes me smile and look up to see if someone's smiling there too.

Like today, when I was asked by one of my girls something about riding boots.
The question was brought about by a visit we paid last saturday to the shoppingcentre where we saw bags in the shoppingwindow which I called saddlebags.
They made her think about riding the horse of a friend a few years ago, and it has been on her mind all weekend, she said.

We went online and visited a site, just to look around, and there she saw the boots.
From a corner of my eye I saw they had a spring sale of 70%, but as we don't ride horses on a regular basis I didn't even look.

This afternoon the friend with the horse called and we talked a bit and she said she needed a few things for her horse, and that she was disappointed by the shop she used to go to, because they didn't have saddle blankets.
So with a calm voice I told her where to go online.

She was very amazed I knew.

Later she called back and thanked us for the tip.
So in case you need something for you or your horse too... riding boots for instance. :)
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manic Monday #207



Are you doing what you really want to do?

No.
I´m OK with being a mom and trying to be an autism ambassador as well as I can, but I would love to have a bit more freedom, would love to travel, and would love to use my knowledge and skills as a psychologist a lot more.

But unless life changes, I´ll try to live it as good as I can with hopefully enough awareness to use an opportunity when it comes along.

What is your biggest fear? How can you conquer that fear?

My biggest fear is that my girls will be taken away from me by someone who thinks she knows it all better.
I know my girls appreciate the way I´m their mom. I love them to bits. I´ve got limits and set them for them, but they accept that, as they know it´s for them good in the end too.
I try to transfer as much as I know from life, so maybe there are a few things they won´t need to find out the hard way themselves.

Right now we´re going through a rought time with a social worker who hardly knows us questioning my motherhood.
All I can do is ask the professionals around us to step in and have their say.

I hope that the way my girls are, the way they work at school, etc etc. says enough.

The deep, desperate fear in myself is terrible. I conquer it by writing.

Please pray for us.

Have you settled for mediocrity in your life?

No, not really, even though certain people think I´m low level because I´m a stay at home mom and not a professional worker.
What I do, I do it as well as possible.
And with the family we have, mediocre isn´t possible at all. LOL!

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

I heard a group of mothers that they wanted to ask an auto insurance quote to calculate the costs of a car.
They´re not happy with the transport options available not the costs are rising sky high.
They want a car.

The council is trying to introduce a certain kind of travelcard for the busses, which will in the future also be goof for trains.
It's a chipcard.
The whole idea is that you put money on it, and each time you check in the bus you hold it against a reader, and when you check out you'll hold it against another reader.
When you forget to do the last, you´ll pay a lot of money.

Instead of a fixed amount of money for going to town, one pays the kilometers. Not sky wide, but roled on the wheels.

Well, most busses won´t ride as I want from a to be, but take streets and parts of town where I don´t want and need to be.
With the fixed prize I don´t mind the money, just the nausea I get from being in the bus too long.
When I return from a meeting I sometimes hop on a bus which takes me home through another part of town, but it´s safer than staying at the railwaystation and wait 55 minutes. When the chipcard will be the only means to pay for the bus, I´ll have no other choice than to face up to the late evening dangers there.

Wish we could afford a car.
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Sunday, April 25, 2010

Teabags and autism

We needed to pay a quick visit to the shopping centre to buy one of the girls a new rugsack for school.
She wanted me to go with her so she would buy good quality.

On our way to the shop we went through a corridor where young people dressed with a huge smile, nice pants and a beautiful shirt where handing out bags with tea.

One of the girls came to us and gave us two bags with a different taste.
I suddenly heard myself ask: "One of my sons is autistic and he loves tea. Please can I have a bag for him too?"
"That's OK, she said" and went on with her movement to give one of the girls her duo.

When she was ready with the small group around her she suddenly gave me all the bags she still had in het hand with a serious face. "That's for him".

Ofcourse I thanked her accordingly and then we moved on, with tears in our eyes.

.
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Saturday, April 24, 2010

I Want to Hold Your Hand

saturday9

1. What do you notice about other people's hands?

My gram had hands of a very old woman. Well, she was 95 or so, so I would have been surprised if it had been otherwise.
But she was young in her soul, heart and opinions.

So I don't judge people on how their hands look when I don't know them.

I see however if they are clean and if there are black rims under the nails.

2. If someone was nosing around your house, what would you hope they wouldn't see?

Hmm... the pile unfolded laundry? And the mess at the attic.

3. Do you think that the more stuff you own enhances your life or adds to your burden?

It enhances life when I have the time to use the things I've collected for my hobbies.

4. What was the last movie you saw in the theatre?

Can't remember.

5. What do you have under your bed?

A pile of unread magazines, some bottles of hairshampoo, and empty bottles I collected for glasspainting.

6. What do you think your s/o or best friend would say about what makes you unique?

The unlimited energy to advocate for people with autism, the endless fight for real justice and understanding of people.

7. What's your current favorite TV commercial?

You mean that stuff on TV that enables me to do part of the dishes, put the laundry in the machine, or do anything else that lasts about 5 minutes?
You don't think I take the time to watch that, do you?

8. Who do you owe a phone call to?

I hate using the phone.

9. Do you know about my friend's new meme Wednesday Wickedness? Will you give it a try this week just for me? Please? :)

I've had a look, but the questions are complicated. And to be honest, I'm not that up to date with celebrities to answer questions that have the word in it.
I'm sorry I sound unkind, but I don't have the energy at the moment to do another meme.

have a great weekend.

Want to take part too?
Click the logo.





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Friday, April 23, 2010

Online studying for a criminal justice degree

In the past I've often said that I would love to have earned a criminal justice degree to enforce law in the proper way.
My contact with socalled careworkers hasn't been always positive, and I'm sure we would have been treated better when they would have known that the law is important to me.
But I thought it was never possible to combine running my family with a study, so I forgot the idea.

Yesterday I was again psychologically attacked by someone who thinks she knows it all, and she behaved in such a way that she crossed some borders the law has created to protect people. And among them are my children and I.

Looking on internet to find what I could do to stop her harassing me, I found a site about online criminal justice degrees one can earn at the Northwestern College online.
In case you're interested: the Northwestern College offers far more online courses on subjects about health information technology, business administration and criminal justice.

Earning degrees on these subjects will improve your income and changes to find or keep work. You will also develop some important personality traits to do your job well.

Studying online offers lots of benefits, including keeping control of your own time, so you can work or perform your daily activities.
Because Northwestern college is accredited you are assured of the best education and a usefull degree.
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Thursday, April 22, 2010

Sometimes a chain is broken

Life is a constant chain of events.
Sometimes a chain is broken.

Too much to express feelings in words,
carrying too much weight.

It happened here too.
I tried to do what was right.
Followed my heart, my brains, my being.
Cared... maybe too much.

Too much for too many.

Yesterday the chain broke.

People who don't know us unvaded our home to "help".
But all I heard was their prejudice
and book knowledge.

Ofcourse we didn't fit the picture in their mind.

They asked me questions they themselves would never answer
when you asked them, or I.

Now they're manipulating me
to act in ways
that will harm people more than benefit them.

I've reached out,
got a long talk, compassion,
and was referred to someone else.

I reached out again.
Silence.

People are so stuck in their minds.
When other people don't fit the picture they're wrong.

I once saw a boy
rocking forward and backwards,
over and over again.
"I don't follow the rules",
he mumbled.

Just becausse people don't follow the rules,
doesn't mean they're dirt.

No one stands up for me,
not yet.
Maybe never.

Do they sleep better when I cry in my bed?

.
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Wednesday, April 21, 2010

Deadlines

Yesterday I got the mail with a word that's never used at hearingdistance of me: "deadlines".

I grew up with agenda's, and when I started writing and organising at secondary schools a new concept entered my life: deadlines.

When I left university I told my editors: no deadlines for me anymore.
You can tell me when you like my writings finished, and you'd better move the date 14 days forward, but never ever use the word again.

I hate deadlines, and there's something within me that makes me feel numb and completely uncaring.
One way or another I don't feel the pressure other people do.
Instead I seem to be conditioned to feel a silent protest growing inside me, which attacks all normal sense of politeness and agenda-consciousness. It makes me aware of what happens in the world even more than usual, and ofcourse these matters are far more important than pleasing an editor with a text.

When you need a text about a subject within an hour, you can ask me kindly if I'm able to, and you'll get the text within 45 minutes print ready.

I'm not one of those writers who need a desk editor going through my lines and an end editor checking him.
Just tell me who's going to read my stuff, what it's used for, and you'll get it.
Without the typos you'll find in this blog.

Writing is, for me, a process which runs in my mind when I do my things.
It's like steaming vegetables. Put in the ingredients, close the lid and leave it.
No need to watch the clock, because the smells will tell you when the dish is ready.
My writings are ready when I feel the urge to sit down and forget everything around me.
The whole text will pour out, all my senses are stretched to maximum length to pick from my brain the right words, the best sentences and the logical course of the story.

No need for deadlines to cross a natural process.
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Tuesday, April 20, 2010

BC Bloggers’ Party – Get to Know Me

Photobucket

Hi!

I'm Laane.

Usually I describe myself as a mom of 6.
The oldest 4 are boys, all with an autism spectrum disorder. The youngest is dealing with classic autism.
The other 2 are girls. Twins. One is dyslectic, like one of the boys.

I'm always busy arranging things for them, solving problems or guiding.
Dealing with the problems other people caused is one of the main issues.

The father of the children is autistic too.
I thought I married a silent man, but it turned out that his silence progressed into something that leaves me the only one to manage this family without ever getting a compliment or a hug from him.
He wanted a large family, and fulfilled the expectations of his family. That's it.

A few years ago I started an autism organisation, which has grown fast. Upon request it became international.
It's all volunteer work, because I think that help should be available for everyone, not just for those who can afford it.

As a small child I grew up near the woods in a time that the only danger was in nature itself.
The most important people in my life were my father and my grandmother. (My mother was struggling with the aftereffects of WW2 and didn't hesitate to tell me I was unwanted.)

I loved nature, loved to read and write, and make music, and always had a strong feeling for justice.
As a shy girl I had the opportunity to learn to observe.

Music was, apart from food, the main ingredient to keep me going, and it still is.
My father was conductor of a choir and took me with him when I was very young. I learned the choir songs in such an easy way, that my grandmother taught me operette.
When I grew older I sang in choirs (as first soprano), learned to play the piano and organ, and taught myself guitar, flute and a lot more instruments.

Music gives me a feeling of home, wherever I am. I'm a bagpiper now, playing smallpipes too.
I would love to learn to play the hurdygurdy.

Reading gave me my own world when I was young. At some time I'd read everything for children in our local library and I was granted permission to read the astronomic and nature books too.
My interest in space, seismology and vulcanology started then.
Now my children are used to NASA TV being on when there's a spaceflight. I love it.

I've enjoyed my schoolyears, even though I have some serious questionmarks about the issues that lately hit the news.
I have been able to push away a lot of bad experiences, because I always considered each new day a new beginning, and because I had to find a way to live at home with my mother.
Being at a socalled holiday home when I was 8, visiting schools with nuns and later jesuits, has shown me a lot about how people are and want to be.

I grew from a shy girl into a very active person, writing in schoolpapers, organising events, with always the intention to make life as happy as possible for as many people as possible.
My life was split up between home, school, my gram and my balletcarreer.

I went to ballet when I was 4, because the sisters thought it good for me to express myself that way.
When I was 9 my mother got a visit from the famous balletteacher in town who asked her to allow me to go to the ballet academy.
My mom refused.

Without her knowing I went to the balletschool in town as soon as I went to secondary school. I got free lessons and my gram paid my balletwear and shoes.
I always danced, got extra lessons at the academy when I was at university and made it to stage with a group on international tours.
When I met my husband to be I stopped. I never should have done.
My niece offered me plenty of opportunities as a choreographer and teacher. I loved that too.
When the girls were 2 I started again, a bit hesitant, but soon I drove everyone nuts to state that ballet is good for older people too.
I performed the last time on stage when I was 43. Soon after I got diabetes and my body couldn't cope anymore.
I'm sure I'll start groups for the elderly when I'm a bit older. LOL!
There's still a balletdancer in me, trying to get out.

I studied psychology in a time that studying was a joy and didn't cost much.
So I also did pedagogics, got permission to follow the medical curriculum, went to sociology with a friend, and enjoyed biology too.
Psychology stayed my main study though. Neuropsychology didn't excist here yet, but I went a far way to put the foundations right in front of my professors.
Being the youngest staff member, teaching research methods and statistical analysis (no one wanted to teach that and I needed the money. LOL!) helped a lot.
During those years I also developed a special interest in autism.

I had to pay for my own studies and had to work.
Because I already was writing for a magazine when I was in secondary school I applied for more work at the editor and this took me into a learning process I enjoyed very much. How to develop, organise, edit, print a magazine. All the ins and outs I was taught. It was great!
As a result I'm still asked by journalist friends to review their articles. I do, when I've got the time.

With only 4 hours of sleep between the last person going to bed here and the first to rise, I should have time enough, but one way or another I never have.
There's always too much to do.

Bloggin started 10 years ago, when I was invited by someone.
It has become a moment for myself.

I hope to have access to internet forever, because I almost never see my real life friends, and I often "see" my online ones.

Plans for the near future include a move to Scotland.
I want to live in a little house somewhere in nature. Growing old in a quiet way.

If it ever happens depends on a few important things, including finding a job and money (lack of.)
We don't mind learning new things, working on a farm with someone who is too old to run it himself.
We want to give up everything to move, in fact.
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Monday, April 19, 2010

The World of Ballet

After so many years on stage myself, there's always something special about visiting a performance.
The ballerdancer inside me is still there. She's moving quite a lot better than I do at the moment.
And the lights were not for me. Not anymore.

Yesterday my two girls performed.
They're past the years of waving to mom, sticking to automatic movements like putting their hairs behind the ears and other unnecessary behaviour.
They were concentrated and mesmerized the people in the hall.

My young mom's pride of "Look those are my girls" has changed into a lazy feeling of content. They're doing well.

So I was surprised to hear that one of them wanted to stop with ballet and move to sports.
I asked which sport, and she didn't know.
So out with the truth.

She wanted to learn more and new stuff, but she didn't like the teacher who comes next.
Aha.

The teacher in question had been looking at me for quite a while after the event had finished.
Untill my daughter told this to me I didn't have the faintest desire to move towards her, but in life many things can change suddenly.

So I told my daughter to come with me and asked the teacher for a few moments.
I introduced my daughter to her and told her that she wants to move forward, but had a scare that one time she received a lesson from her.

A faint smiles ran over the teacher's face before she looked at my daughter.
"I'm not always easy...."
"Noop, she isn't. But she's honest. When she's in a good mood, she smiles. When she's in a bad mood,....uhu...don't ask me.
She's a teacher, so she teaches. Always. She scrapes and directs your movements until they're perfect.
She's an artist. She lives with her feelings.
When she's very nice to you, you'd better stop dancing, because then she has given up on you."

For a moment the teacher looked like she was going to attack me, then she smiled and laughed loud.
"You're right. You're so right, that's me."

We had a pleasant talk and I saw my daughter change.
Then suddenly the teacher excused herself for the way she treated me last time. For the argument, for her own behaviour.
After all those years I didn't expect an excuse anymore.
We had a clash, a firm one, about a choreography, the limitations of the dancers in the group, and the way she dealt with a performance. I had to represent the group and excuse her behaviour, not only to the press and the competeting groups, but also to the director of the school.
I prevented injuries, a lot of problems, and all she did was tell me that we should have waited for her and kick me out of the group.
Her loss.

We didn't spend much words on the situation then. I accepted her appologies and she invited my daughter to her lessons, gave her advice to take a second class with her (she only invites talented girls for her second lesson) and asked me to come with my daughter once in a while.
We parted in a very good mood and my daughter was glad we had the talk.

When we went home I had to smile about something else too.
We're all older now.
I stopped ballet because my health couldn't keep up with running a large family with 4 kids with special needs, and hastily bicycling to ballet each evening, to catch an hour distance in 35 minutes turning my feet.
They, the teachers, stayed teaching.
I wrote choreographies and organised performances at my nieces balletschool for a few years when the children were still little.

Now we all have large size clothes.
There's a kind of justice that we all changed from skinny dancers into full sized women.

But oh... how I would love to teach again.
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Sunday, April 18, 2010

ballet performance

Today the girls have their annual ballet performance.

Last year my autistic son made such a stir that I couldn't go.
This year I will, even if he would break the house down all by himself stone by stone, I told him.

He's quiet.

I'm not sure about his mental abilities though.

Why?

The heating broke down again.

The shower was of a changing temperature between tepid, cold and very cold.
And as I hate cold showers I wasn't amused at all.

Yet, I'm all dressed and ready.

I'm off now to get my pendant, bag and my inhaler.
Oh, and my sunglasses.

My autistic son is playing WOW with his brother, both at an end of the house.
So in case WOW goes down, you know you have to find this house.
It'll be the one that is demolished...stone by stone.


.
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Saturday, April 17, 2010

Saturday thoughts

Align Right


One of the main issues in my life is dealing with people who are not the person they seem to be.

A mother who was abusive, a partner who didn't care about me, a best friend/almost brother who kicked me out of his life like garbage.

I thought that I could rely on my memories.

Ofcourse I knew they were mine and mine alone.
It was my perspective, my issues I considered important.
I thought I had a nice collection of moments to keep me happy at an old age.

Last week it turned out that even my memories are nothing more than illusions.
Someone who was trusted completely, a priest, turned out to be an abuser.
Not for a moment, but for many years, with several pupils who were trusted in his care.

Two weeks ago I questioned myself if I wasn't too rough on people at the school of my girls for not taking enough action against bullying.
Now I'm glad I have always kept a close watch on who had to care for my children.
I was very critical.

I should have been during my own schoolyears.

Today I visited some sites of the jesuits, trying to find a signal that they offer help and care for those who were abused.

All I've found was that they can complain and have their case reviewed.

I miss the human element in it all.
The interaction between caring beings.

Two night ago I've sent a mail to the spokesperson of the jesuits in my country, calling for acqnowledgement and more care.

Today the head of the jesuits in my country spoke out against the abuse in a way which is rather new.

But the element of real pastoral care is missing.

So I'll mail the national organisation once again, requesting to add another main item to the list of international priorities:
- safety, psychological, physical and social, for all those trusted in the care of jesuits.

I'm curious if they'll accept this.

In the meantime I still feel we're just on this earth as toys for some strange overall power.
We're part of a game.
And I don't like it.
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Friday, April 16, 2010

Grinding with Laane


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

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

Well, you're allowed to consider this as much.
When you want to take part, let me know and I'll send you the graphic, with your own name.
When you've written your post, put a link in the comments, please.

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

  • Main issue was sexual abuse in the Catholic Church. People from my former school stepped forward, and it turned out that someone I trusted abused at least 15 boys. As I had some main positions at school I should have seen it, known it.
    I couldn't sleep, researching memories, moments, places, people.
    All it generated were more questions.
    This morning I discovered that among the victims one boy I knew a little bit. But as my questions will be answered I think I'll know more victims and better.
    How could I be so naieve? How can I help? What's the worth of my memories?
  • We were bugged with more bills for my mother in law and brother in law who died last summer. We even had to pay for water used after their death. No way!
  • Had a parent's meeting with two teachers. One of them gave me the chills. She knew she was dishonest as she didn't even look at me when I got a hand. Brrrrr....
  • I had a bad cold this week, decorated with spring allergy. My muscles still ache.
  • My other site was hacked and some very ugly links were placed on it. It took me far too long to undo this. I wanted to use that time for the autism site.
Well, a new weekend is before us.
Let's hope that the huge cloud with vulcano ashes drifts over soon.
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Thursday, April 15, 2010

choices, it's al about choices

Today there are so many things on my list that I took a free floating attitude. Meaning I'll do what needs to be done at that moment.

So instead of doing other things I wrote a comment to someone I've known in the past, who's now a high positioned priest in my country.
His reaction to those who came forward as being sexually abused at school was distant and more oriented towards safeguarding the good name of the organisation than the needs of the people in question.

I don't care for a good name of the organisation when I worry about people.
It's stated that those who came forward were all who were abused.

Sorry, but I don't think so.

Too many people said in the past that they didn't share my good memories (which are squashed to pulp), and even though I'm sure they wanted more freedom to do what they wanted, I'm also afraid that more people are dealing with the memories of sexual abuse without anyone knowing.

So I took the time for a comment, instead of doing things other people think are more important (like folding laundry).

Right now I'm waiting for a boy to come down so I can cut his hair, after that it's cooking dinner and preparing to leave for a meeting at the school of the girls with two teachers.

One keeps telling one of my daughters to direct her questions to her sister instead of him. But her sister isn't a teacher, and she needs her time because she's dyslectic.
The other is a teacher who bullies my daughters.

It's remarkable how I've changed through the years from a very shy child to a woman who stands up for everything that needs standing up for.
OK, I know that most of the time people just don't care and won't care a bit about what's important to others, but when I won't stand up I feel I'll neglect the call for responsibility I hear.

When we're back this evening I have to look into some letters and bills that arrived today.
My mother in law and brother in law died last summer, but we're still getting bills and paperwork, even though we've already closed the books and reported to the taxoffice.
Yesterday we had to spend time on making calls about a bil over water used during september. As fas as I know the dead don't use water.
Do they?
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Wednesday, April 14, 2010

A new way into the psychiatric future

Yesterday I took one of the girls to our family doctor.
She's the second of the twins, we believe, but the gynaecologists labeled her the first.
She's small, a bit behind in development and as pale as I used to be.

On her way to school she experienced chestpain and at school she first aider checked on her during breaks.

After waiting for over an hour, we finally went in and luckily had all time of the world.

She was checked well, and declared healthy.
And after that we talked through the children.

I told the doc that the present psychiatrist doesn't keep his agreements about referrals and such and that I'm kind of sick having the nice smiles but no helping action at all.
He even delays finishing the diagnostic process, so we can't do anything at all. Not chosing a school, not getting help, not even getting this son a disability income.

So I want them to say their goodbyes and move to the adult psychologist.

I don't even want to wait for a referral from the psychiatrist, but move on just like that.

We smiled.

I've changed over the years from someone who beliefs everything others do is with the right intention and proper care, to someone who has a lower limit of expectations and takes actions when this low limit isn't met.

I also said I wanted to have a talk with this new psychiatrist first.
I know him from the times he diagnosed my two oldest ones, and he knows me.
Because things are getting harder each day I want to unfold my plans for both youngest boys and hear his opinion when the time is ripe.

There needs to be something positive lighting the horizon, because life isn't fun anymore.

because our family doc wasn't kept updated by psychiatry at all, the doc asked me to write te referral.
He'll add his things when necessary and then we'll go from there.
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Tuesday, April 13, 2010

Dark clouds above my memories

I didn't sleep last night.

Even though I was tired enough, even though I'm always able to stop my thoughts, this time I couldn't.

I knew something would be on TV about sexual abuse in the Catholic church, yesterday evening, I didn't watch.
But intuition made me look up the contents of the program and what I found was devastating.

One of the people who has been of very positive importance in my life was presented as the abuser of at least 15 boys, and one of the victims spoke out. He could even show he got money to silence him, about 9 years ago.

I'm one of the people who had good memories about the time at school between 12 and 18.
First the nuns, Ursulins, later the Jesuits.
I changed from a silent, withdrawn, very shy child into a young women who had self confidence and worked at main positions at school.

I was able to discover my talents, work with them, and enjoy being the way I was.

Not all my friends liked the priest.
My best friend disliked him, and I've even tried to talk him out of it.

Now I wonder if he was abused too.

According to the TV program it happened a few years after we left school... but who knows.

My friend isn't my friend anymore, but I'm thinking about mailing him and sending him my appologies for trying to talk him out of his feelings.
Maybe it opens an opportunity for him to talk with someone.
On the other hand, I doubt if he'll ever want to speak with me.

I've always been happy with my time at school, now I'm questioning every day and every moment.

The guy never approached me.
He did spend time with me, talking, drinking chocolate, but never ever said a word or made a gesture that was even remotely wrong.

I feel sorry for his victims.
But I don't understand why the one who went public went to the congregation 30 years after it happened, and waited 9 years to speak out.

The priest in question has died many years ago.

He won't ever be able to defend himself, if he should defend himself.

I won't ever enjoy seeing photos with him anymore.

Dark clouds above my memories.
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Monday, April 12, 2010

The continuing story - someone new

One of those typical, what we call, autism days.

he complained from the first moment he saw me until late in the evening.
Making me feel like I tiptoed over sowing thread above a deep dark rocky valley.

He didn't know what to do.

There's enough for him to do at home, ranging from computering, using the WII, reading, helping in or around the house with chores, baking a cake or cookies, watching a movie, TV, etc etc.
But when his mind is on "replay" he can't get rid of the thoughts that he's planted in his mind.

Sometimes he has a hidden agenda, and it's for us to guess what he wants.
And for us to decide of we can pay for it.

I'm a very patient person. I've learned to be patient.
But today I didn't feel well. I could hardly speak, and the few words I said where like scratching an old needle over an even older LP.
I just wanted to sleep and get rid of the pain in my head and throat and the irritating bronchitis' cough.

But he didn't even care for a reply, because he didn't want to do anything at all.
He just complained.

After spending the whole evening on the couch, carefully monitoring the conversations going on, stepping between him and his dad to prevent outbreaks of emotions, he finally asked what he wanted: money to play WOW.

With hardly enough money on the bank and in the wallet to buy food for this month the answer was simple: and explanation and "no".

The angry outbreak was present, and he ran with lots of noise upstairs and sat there stamping his foot on the ground with all force he has. Which is a lot.

No, he isn't 2, nor 4. But almost 18.

So we're glad at one side the neighbours perfectly understand what we're going through with him, and the other side makes so much noise themselves that they can't complain without changing their way of living.

He knows that no is no, and not maybe or even a yes. It stays no.

Finally he came down and started to complain again, and I told him that maybe we should find a way to earn the money. Maybe selling a few books or games.
He quieted down.

His day wasn't as uneventful as he wanted to make his father belief.
This afternoon we got the news that his social worker has found someone who wants to spend 1 to 3 hours a week with him.
They'll see each other for the first time next monday, with his social worker and me present.
After that it's expected that they'll arrange meetings themselves. Talking, walking, whatever.

She can use him as a subject for her studies, and maybe he'll enjoy the time with her.
And maybe there are a few hours a week I can spend without him in the house.

We'll have to wait what's going to happen.
In the past we've often seen that he's unable to cope with the slightest change in his life, and leaving the house is to him a major change.

I can't imagine being able to sing without someone commenting on it, whether it's positive or negative. Or exercise some violin, or maybe burden the whole neighbourhood with my highland bagpipes.

It's like a whole new world is opening up with this young woman waiting to meet him.
He can be very nice.
I'm sure he'll be nice to her.
I hope he won't complain afterwards.
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Sunday, April 11, 2010

Princess Victoria of Sweden made a difference

We have our own Royal House in The Netherlands, but as far as we know none of the members is dyslectic.

It's many years ago, when we were watching a royal wedding when it was mentioned that Princess Victoria of Sweden is dyslectic.
My daughter jumped up from the couch and gave me a big hug, sighing: "Finally...finally... now I know a Princess who's dyslectic too."

It was like from that moment on some hidden princess magic had touched her heart and mind.
At school she didn't accept to be treated as a victim of a learning disorder (yes, she was treated like that), and she even seemed to have gained height. No need to hide yourself when a real life Princess has to deal with the same difficulties.

When she left primairy school one of the teachers (the one who was also coordinator of the schoollevel), said she'd better go to a school for children with special needs. Small groups, special attention and less requirements would be good.
After our disastrous experiences with her autistic brother at the school for special needs no one of our family would send her there, ever!

She wanted to go, with her twinsister, to the school where she got her bagpipelessons at saturdays.
It took quite some effort to get her there, but she was admitted.
The school decided that they both would be at the same group, so her sister could help her.
Which meant in fact that she was already functioning one level higher than adviced.

Like a real princess she entered the school at the first day of the year, prepared to give her best.
And she did.
Last week the girls got advice for next year.

Her twinsis will go on at the same level she was admitted at (, which was one level higher as her dyslectic sister).
And my dyslectic daughter will go a level up, which means she´ll go two levels above the former advice.

Interesting is that she was disappointed, because she expected even one level more. Which is the highest level.
"Well, she said, there's still time this year I can show them I'm able to make that level."

She works very hard. Sometimes too hard.
And we have to struggle sometimes to make teachers see that a small adjustment would mean a complete difference in learning.

Some inner strength makes her go on and on, to become the person she wants to be.
And when I ask her what makes her feel so confident she can do it, she says she works hard because Princess Victoria has shown it can be done.

And now she wants to go to the wedding of Princess Victoria at june 19th of this year.

14 years of age, wanting me to arrange it.

Ofcourse I'll try to get in contact with the Swedish Royal House. Maybe it's far too late to do so. But I can try.
And maybe I should ask our Royal Princess to speak a good word for her?

What do you think?
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Saturday, April 10, 2010

Book give-away

The last week one of the girls was coughing a lot: bronchitis.

This morning I woke up ill.
Throat, ears, lungs. The whole lot.
I guess it's payback time for working too many hours a day without taking some "me-time".

After hanging in the laundry in the wind I was tired.
That isn't me, and I hate it.
Time to divert my attention.
Remembering I never got the last give-away I've won, I surfed around a bit trying to avaoid give-aways, but ended up participating.
Hope is good for the soul.

I found a blog with a book give-away on birdbrain(ed) bookblog

Halith by Kirsten Kelly

The cover and the story immediately caught my attention.

So I hope I win, and I hope you'll enter to win it for me. LOL! Or for yourself.
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Friday, April 9, 2010

Grinding with Laane


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

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

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

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

  • One of the girls found her bicycle with pins in the tyre and the airvalve turned out. Someone must have realised her bicycle stood just a few cm's from the surveillance camera's.
  • I woke up this morning with a soar throat and a headache. I guess an elephant stepped on my head tonight, and I missed it.
  • One of the boys who is supposed to deal well with his money with the help of a special caretaker came home with a bill and expected us to pay. Alas.
  • Yesterday I wanted to go to bed, had to put something away in the fridge and found a sea of liquid at the bottom. Had to clean the whole thing and realised we need a new one. I've never asked my parents for money, but I cried this time. My dad has died long ago, but I wish he was alive again so I could ask him for a new fridge.
  • Nothing heard from the psychiatrist who promissed care for the eating disorder of my autistic son and a good diagnosis for another. It's a symbol during autism week of the lack of care here.
  • Ofcourse I didn't win the autism prize, ofcourse I was right about who would win. It shouldn't have been about a commercial organisation, but about volunteers and special people.
  • There's a blog at our paper about a couple with a handicapped child. They were called about the continuation of care, and were all over the floor because they had to tell what their child couldn't do. They both worked.
    Well, I can't work, because I think it's my responsibility to care for my own child, because there's nowhere for him to go, and because we don't have the time to fill in all the forms. Life with a handicapped child is never normal.


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

Have a nice weekend!
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Thursday, April 8, 2010

Redressing for spring

I'm changing the look of the site a bit.

Hopefully not with too much inconvenience for you.


:)
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Wednesday, April 7, 2010

reading faces

My autistic son has problems "reading the faces" of people.

When he was young he became panicky and full of fear when he couldn't understand the facial expressions of the people around him, now he thinks people are angry, and he reacts accordingly.

To prevent emotional outbursts I have to "translate" into words how other people feel, and to other people I sometimes want to explain why he reacts the way he does.

During all the years he went to school only one teacher took the effort to be aware of the problems of my son.

We realised my son had problems understanding the facial expressions of this teacher because he often told at home that his teacher was angry. Luckily the guy was very open and I dared to ask him if he had a morningmood each day.
Like many people he had problems waking up, and felt tired a long time, but he didn't have a bad mood. Not at all.

Since then he told my son each morning: "I'm tired. But I when I see you smile I can do it too."

It worked!
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Tuesday, April 6, 2010

Questions regarding Great Ormond Street

Today the new series of Great Ormond Street Hospital started at the BBC.
It's about what's going on in a children's hospital.

Today the cardiologists were showing the dilemma's of cardiosurgery in severe ill children.

They managed well to show how concerned they are about the wellbeing of children and their families.
This stresses the enormoud difficulty of the decision to operate or not in children who are dying.

As a mom of a baby which died after birth because of a wrong diagnosis I appreciate the care they feel.
But I also have some thoughts about the remarks they made about not operating to cause no more stress on families.

There is no greater stress than death.

Parents want to do anything to keep their children alive, even when they have to suffer themselves.
To accept a child is going to die and to see your child die before your eyes is awful. There are no words to express what's happening with you as a parent.

To see that the team went for second opinions after pressure from thge parents "because they were not rich", was alarming.
It means it's not routine to do so in serious cases when they've decided not to offer surgery, and it's left to the parents to do so.

The child shown got surgery after all, because the second opinions gave serious reason to do so.

If the parents wouldn't have urged the doctors to take action, the child would have died.

How many children have died because their doctors didn't get a second opinion?

How many parents feel deeply guilty because they haven't put pressure on the doctors to get a second opinion?
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Monday, April 5, 2010

DIY-day






This morning the father of the children told me he'd decided to change the lock.

He did so last week, but he made a mistake.
I hope he won't read it here, because it'll drive him nuts to see I know what happened while he is questioning his male mind and is full of accusations.
He didn't place one complete lock in a door, but he mixed up two cilinders (4 parts) over two doors.

So a key got stuck, the lock wouldn't work.
Before the other door was used we removed the lock out of fear it would get stuck too.

I was happy we had two anti-burglary hooks installed, so we could close the door well during the night.

Today he bought new locks and started to drill out the latest installation.
He's a DIY man with two left hands who has drilled through walls twice, so we were happy one can drill through a lock without damaging the other side.

He didn't use his mind, so the door got stuck completely after he drilled the cilinder out. LOL!

I was happy, because now he needed to drill the whole lock out and not just the cilinder.
(I wanted the whole lock exchanged before, because it was 25 years old, and I thought the cilinder wasn't the problem, but the old "house" of the lock.)

Well, the lock is exchanged.
I managed to make him use just one complete lock at a time.
After the drilling it was just a matter of putting things in place following a leaflet with drawings.

Ah...we have such a smooth lock now!!

In the meantime I did some chores and when my leg was far too swollen again, I reinstalled intense debate on this blog.
When I first installed it, I thought that putting it on the new posts would be enough. But someone has been stalking me with annoying comments and advertisements I would never allow, so I've put it in all posts now.
Maybe I've lost some comments, or maybe all, but I'm not going to look.

My autistic son just came down with all his emotions bursting out.
His computer gave up.

Me oh my... will it ever stop?
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Sunday, April 4, 2010

Special days are disruptive for people with autism

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Happy Easter!!






Most of us like those special days like easter, christmas and feel uplifted.

But most people with autism feel they've lost their normal routine.

Where normal families visit chruch and/or family and friends, relax, enjoy dinner which fits the occassion, many autism families have a hard time.

When the oldest asked the girls for a sleep over at easter at his apartment last week, we accepted his offer.
So the girls have just left with eastereggs in their bags.
I hope they're having a great time watching TV, computering, talking, cooking and baking cakes they'll bring home tomorrow evening.

Their brother was in a bad mood today from the first moment he opened his eyes.

Yesterday evening, on TV, the eastermass replaced the usual programs, so he went to bed feeling different.

Specials days create a different world for people. The tastes of the food, the programs on TV, the smells, the colours on the table.
Normal routine and feeling at home is discrupted.

Some autistic children stay OK, because their favorite toy is still available, they wear their favorite clothes or play their favorite games at the usual times.

Others, like my son, feel lost and landed on an alien world.

In an attempt to control his world he starts to control us.
He yells not to hear his own chaotic thoughts, and he comments on everything we do.
Ofcourse he knows he can't tell his parents what to do. So he indirectly comments on everything and he orders his sisters around.
Is one reading? How is it possible to read a book when your homework isn't done yet.
Why isn't lunch ready? Sure there are people at home who are hungry at the regular time.
Why eat eggs? Cholesterol is unhealthy.

His stream of thoughts, commands and moans is endless unless someone manages to divert his attention, but as soon as something happens that he doesn't expect it all starts again.

This year we're lucky there's no eastervacation and the girls have to go to school again at tuesday.
It'll take a few days untill he's used to the normal routine again.


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Saturday, April 3, 2010

Autism. Thoughts and communication

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One of my main duties here as autism mom is to clarify what people intend to express.

But at times I fail.

Yesterday evening the father of the children made an appointment with his son.

All seemed to be clear.

He stated they would go to town at 14.00 hours.

So when he arrived here at 13.35 hours I offered him coffee and a lunch.
But I was greeted with a mad looking male, who reacted unkind to my offers.
Why was his son not ready?

I told him his son has plenty of time to get his coat and shoes on... why not take a coffee.

"Coffee, coffee...I don't want coffee. We need to leave now to catch the train of 14.00 hours."

"You said you wanted to leave at 2."

"Yes, from the railwaystation."

Was it strange we expected that he wanted to leave from home?

Well, this was just another example of part of the message not communicated well, with problems as a consequence.

This time I was able to keep my autistic son's head cool.
His shoes were already standing beside the door, the coat was ready.

They left in time and caught the train in time.

Often a lack of communication like this leads to a panicky autistic son, who needs hours to get quiet again, and an angry dad, because hé thinks he said it well enough for others to understand.

***sigh***
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Friday, April 2, 2010

Grinding with Laane


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

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

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

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

  • Yesterday plans for cutbacks were publicised. I first thought they were part of an april fools joke. Not! Now we depend on politicians to have enough wisdom not to let normal people suffer more. I wonder if there's enough insight by those who have to realise cutbacks. None has even looked at diminishing import.
    I don't know how we can cope with less money. I just don't know.
  • They still haven't caught the masked man.
  • The father of the kids changed locks. Never heard from oiling them before using them. So the first morning the key got stuck and he can't remove the cilinder. Now the door can only be locked with the security hooks. Meaning that no one from the outside can come in... so I have to stay downstairs until everyone is in for the night, and I have to be on watch the whole day.
  • The Dutch url for the autism site didn't come through. I think the person who was going to arrange it forgot it. I bet people will be moaning again about a few Dutch posts between the english ones. (Well, I dont have the money available to get the url at another place.)
  • I saw wonderful shoes this week. Oh, I so liked them. Even took a fit and realised I shouldn't have done it. Stupid!! They were only 20 euros.
  • One of the girls is ill. I hope she doesn't infect the whole family.
  • I was the only one who remembered the birthday of my second girl who died at birth.


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

Have a nice weekend!
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Autism Awarenes Month

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As most of my readers know I'm a real autism mom.
4 of the 6 children are diagnosed with an autism spectrum disorder.
  • Asperger Syndrome and ADD
  • PDD-NOS
  • ADHD and PDD-NOS
  • Classic autism


And their father has to deal with an autism spectrum disorder too.

All members of the family have to interact with each other, and when you know that autism involves the way people communicatie and perceive communication, you'll understand that one of the main issues in our home is to deal with each other without misunderstandings.
Often I'm a translator between people.
I've so often said: "He means.....", that sometimes, without thinking, I translate between normal people to when I sense some stress.

Autism involves all areas of development and all areas of living.

From the first moment one of the children opens his eyes, until the person is asleep again life is complicated.
Not always due to the autistic person himself.
Society is complicated and people, organisations and rules and regulations are not as easily understood as we would like.

Part of my work as autism mom is dealing with psychiatrists, social workers, schools, living facilities (the oldest two), insurances, etc etc.

Autism in the family also has a great impact on the lives of siblings.
My girls can't grow up as they would in a normal family.
They have learned so much about caring for others, standing up for themselves, using time efficiently and all those things people learn when they live in a large family and with someone with a handicap.

I'll write about that during this month.

As an autism ambassador and founder of an autism organisation I see it as my task to inform people about autism and to help them deal with it.

Just in time for this month we opened a new site.
Not all texts are transferred to the site, but there's enough to read.

Pay a visit and leave a comment, so we know you value our attempts.
And maybe download a graphic and use it on your site.

Just click the graphic and go to "blog" (today) to find the graphics.
Or click "graphics" in the tagcloud.




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