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Diary, September 2001

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    23  24  25  26  27  28  29

Monday, September 3, 2001

"De Winckelsteegh"

Today, we went to "De Winckelsteegh" in Nijmegen to talk about the eating problems of
Andy. On June 15, we already had send in a tape of his eating behaviour. Today, we, Li-Xia and I, went there together with someone form the day care center where Andy is going to during the week. We met with some of the people that I had already met on May 19 earlier this year. In the meeting room there were some desks, but also a low table with a sofa and some comfortable chairs. A little to my surprice we were invited to sit arround the low table, and some tea and coffee were served. We immediately felt at home, like we were bringing a visit to some friends, instead of being on a doctors consultation. For about one hour we told the doctor and other specialists about the medical history of Andy and his current eating patterns. It was really the first time that we spoke with some specialist who seemed to understand our problems and the things we have gone through, and who respected the decision we made, and the admired the efforts we made to make Andy eat as he is eating now. They think that Andy can only make some progress, if he would undergo an intensive treatment of the kind they are giving. They also adviced us not to wait another two years before starting with this, because Andy's resistance would only grow and become stronger. If we would not do something about it, there is a high chance that Andy will never eat in a normal way, and that in the end his digestive system would not even accept any normal food at all. At the end of the meeting we gave him permission to ask for Andy's medical files. Then they will think about a treatment proposal.

Saturday, September 8, 2001

Curly kail hotchpotch

Today we had the typical authum weather for the Netherlands caused by a low pressure system in the North-East and a high pressure system in the South-West. This means a storm from the North-West bringing and endless number of showers alternated with sunny periodes. One minute the air over head can be a prefectly blue sky with large bright clouds on the horizons. Less than half an hour later it can be raining violently even with some hail, making you completely wet within minutes. And then half an hour later it the sun is shining again.

The curly kail season has started again. Indeed, a little earlier this year than last year, but right on time with respect to the weather. We had trouble finding some of the ingredients, and even went to another shop to find them. We had old fashioned curly kail hotchpotch this evening.


Tuesday, September 18, 2001

One week later

Today, it is one week after the horrible disaster in New York, the collapse of the Twin Towers. I do not feel that I have anything to add to what has been written about it everywhere else. In
1985, I spend one day in NYC. On that day, I saw the towers from the top of the empire state building.


This evening when I cut the grass, I noticed some mushroom. I tried to take a picture from it, but it turned out to be very dark. With the help of the GIMP, I managed to improve it a little.


Playing Go

Lately, Annabel regained her interest for the game of Go. We call it "black and white", because it is played with black and white stones, glass beads actually. Yesterday evening and tonight she also played the game against some computer program. She can win, if she is a little careful, but looses when she does not watch her moves. It seems she still does not understand how the game should be played on a strategical level. If I do not give her some little guidance, then everything goes wrong. But at least she does not get very disappointed anymore when she looses, as she did in the past.


Wednesday, September 19, 2001

The Gospel according to Mark, Chapter eight

I am still reading Mark (if the weather permits) while biking to my office in the morning. Yesterday and today, I read in chapter eight, to be more specific, the last five verses.

To start with verse 34, where it says "take up his cross". Did Jesus really use this phrase, and if so, what did it mean to the people hearing it, I asked myself. Then I realized that the land was occupied by the Romans, who already had established a custom to execute people by nailing them on a cross. And yes, the condemed were to carry the vertical cross bar to the place of execution. We should also not forget that just a few verses earlier, we read how Jesus told His disciples that He must suffer many things and be killed.

If you read the next verse wrong, you could conclude that a disciple of Jesus should also be ready to give his/her life for the good cause, and that it is the only way to get eternal life. I wonder if this verse ever has been used to make someone commit suicide in a "holy" war, just like this is done from the Koran with some terrorist who are willing to die in the Jihad. Actually, the word for life used in the greek here is the word "psyche", which is a translation of the Hebrew word "nefesi", which means "soul". Where in this verse the word is usually translated as "life" in the next verse it is translated as "soul".

Actually, verse 36 spoke the strongest to my heart: For what shall it profit a man, if he shall gain the whole world, and lose his own soul? These words again revealed my deeply rooted desire to become famous, to become known to this world, which is probably one of the reasons why I am writing these web pages.


Thursday, September 27, 2001

Greetings to a fan

I received an email from a fans of this online diary who reads these pages very faithfully. I would like to use the opportunity to send my greetings to Wilma from this place. If you too want to be mentioned here, send me a short

Getting a new driving license

I got my driving license on the day before my thirthies birthday, on October 31, 1991. Driving licenses are only valid for ten years in the Netherlands. After this you have to get a new one. Afraid that I would forget to renew it in time, I went to the town hall after dinner, because only on Thursday evenings the town hall is open from five till half past seven in the evening.

It was rather busy and their were a lot of people waiting, much more than when I got my new passport some weeks ago. There was a little girl running around, and some how from a distance, I already had noticed that there was something special about her. Then when I happened to get closer, because it was almost my turn, I saw that she suffered from Down's syndrome. She was running around and enjoying herself. I talked a little with her. Then also with her father. She was three and half years old, half a year younger than Andy. She was going to a normal day care center, and her parents were considering inclusive education for her. I told her father about our son, and his level of functioning. To some degree, Andy is less far than this girl. I still remembered that I felt some relieve when after Andy was born we made sure that he did at least not suffer from Down's syndrome. This encounter suddenly made me realize that Andy might be more handicapped than some persons suffering from Down's syndrome. Also with Down's syndrome there is a great variation in severness.

When I finally could get my driving license, I suddenly realized that I could have waited another five weeks, till the day of my birthday. But later, I realized that somehow this date is also a nice date, first of all because it is the birthday of my brother. But also because 27 is equal to 33 and 9 is equal to 3*3, and 2001 is dividable by 3.


On the way home, I stopped at some bookshops. In one of them, I found that they were selling boxes with twelve little books from the Bible, except for the missing book of James, exactly, like the ones I bought on July 14 but for less then half of the price, and not second hand like mine. I was a little disappointed, and wanted to return mine. But when I came home, I noted that the price was written in the thirdteenth book, the book of James. This happens to be the only book with its title printed with gold. Maybe that is why it is so expensive.


Friday, September 28, 2001


Less than hundred yards before our company, there were many chestnuts laying on the ground under a chestnut tree. I picked about ten of them. One of them, I brought upstairs in my office. The others I put in my bike bag. At home, I put one inside in a pot with some earth, the others I simply pushed in the earth in the back garden.


Saturday, September 29, 2001

Fifth Dutch Kabuki day

Today, the fifth Kabuki day was held in the Netherlands. The Dutch Kabuki network now exists for five years. To celebrate this, there was a jumping air cushion for the children and there was puppet show in the afternoon. About seventy people came including thirdteen children and one adult with the Kabuki syndroom. (This seventy also included some ladies and girls helping taking care for the children and the food and drinks. Thank you!!)

In the morning there was a speech bij Mrs. T. Defloor who gave us some report about the first results of the research after the articulation which was held in the past years. She examined seven children. This report only dealt with the fonetics (the pronociation of vowels and consonants) and the fonology (the formation of sylables). Some common problems were found, but the results were not yet compared with the other tests that were performed.

Then we had a long lunch with some salades and all kinds of bread. A good time to talk with some of the other parents. After the lunch Prof. H. van der Vlugt gave a presentation of the intelligence tests that were taken from eleven children with the Kabuki syndrome. His most important finding was that the children appeared to score better on the verbal tests than on the non-verbal (performal) tests. He remarked that especially their knowledge of words (compared to their average intelligence) was remarkable good. And as a weak area he noticed jigzaw puzzles and copying patterns with coloured blocks. With this last he noted that they had great problems with asymetric patterns.

Looking at the overal profile in strong and weak areas with respect to the intelligence tests, he suggested that their might be a problem with the myelination process. Myelin is a white fatty substance around the nerve cells, which acts as an isolator. If it is absent, this means that the signals are not transmitted well through the nerve cells, and that the nerve cells need longer time to recover. Myelination is the process of forming myelin. This process starts about one month before the birth and is largely completed at the age of three, but for frontal parts of the brain it might continue till the age of thirty. A poor myelination process could explain the intelligence profile and also the low muscle tone.

(Disclaimer: for the above remarks, I should note that I do not have a medical education, and that I have not verified the correctness of the above statements with a medically qualified person. Although I did my best in trying to be accurate in my wording, the above may contain errors.)

After this we sat in a circle with the parents, and just talked about our children. There were parents of four new children present. Andy is no longer the youngest child known by the Dutch Kabuki Network. This place is now taken by a two and half year old girl, who happens to be from the same area as where we live and, what is even more surprising, who has the same paediatrician.

In the mean time, all of the Kabuki children had a short examination by Dr. Schrander and her colleague as part of the ongoing research. Also a professional medical photographer took pictures of all the children, which will be used in some of the publications that they are planning. Processing the results of the behavioral study that was done in the past two years goes slowly and it might still take some time before all the results will be published. There are plans for several publications in scientifical journals. Beside this also other publications are planed, such as for example a publication in a journal of the Dutch G.P.'s.

Finally, a small information booklet about the kabuki syndrome was presented by a representive of the Dutch federation of parent organisations. This booklet contains both a description of the syndrome (like presented on the web pages) and some personal stories accomplished with a picture.

Again it was a very blessed but also tiring day.

(Fourth Dutch Kabuki day and Sixth Dutch Kabuki day)

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