De Belevenis

This is a special project for special children made by artists. A big tent build as a mobile construction is placed on the sport field near Rotterdam harbor. It will stay there for a few months Than it will be reconstructed and transferred to another town in Holland. This way everyone has the possibility to see it in their own neighborhood. A really special project.
Inside this big tent is placed a fantasy world designed to stimulate our six senses in many different ways. The project is called “De Belevenis” which means The Experience. Every visitor can get their own unique experience depending on his/her individual level of understanding/functioning.
The tent offers 6 large rooms created as a specific world of sensations: Ocean, Sky, Jungle, Arctic, Arabic and Red Surprise. Each of them offers their own special sounds, tactility and visual stimulations in the range: from simple to more complex. Sometimes we have to press a large button and snow begins to fall, or a wall starts to vibrate, or a big elephant head waves with his large ears.... Sometimes we have to open a door and bells start to ring inside, or a small carousel begins to turn around, or a strong aromatic odor comes out. There are big trampolines, large soft tunnels, water beds, and life size tubes with a light show to stand in. In different places you'll find slow and large slide-shows of fish swimming in the ocean, sounds of birds and a misty jungle atmosphere . . . . . A really amazing world of different experiences for our senses. When you get tired of the impressions you can go to a special room with a king-size warm water-bed. Here is a lady who will give you a relaxing massage with aromatic oil as long as you need it.
This project is created only for children with special needs and old people with dementia. The groups were small up to 30 visitors for a day so that everyone has enough time to make discoveries and to take their own experience from it.
Here are some photos to get an idea about “De Belevenis”:


Every year we visit De Belevenis once. This was our third visit.
It was a present from Marijke, our neighbor who plays with Dejana already for 10 years. Every week she comes on Thursday morning for tree hours of exercise. This time she took us to a special event outside. Marleen, another member of our team joint us as well.
I am always curious about changes that Dejana might show in comparison with the year before.
And she surprised us pleasantly. It was the first time that she went from one object to another very curiously and observed them carefully. This is not usual for a child with Rett syndrome. We were very exiting to see that she turned her head and looked around, that she recognized big animal-toys from a distance, smiled and turned her body to go there and touch them. She did it in slow motion but it was very close to a “normal child's” behavior. So nice to see it! Dejana observed her surrounding and could orientate in space all on her own. She did this for a half an hour. Then she got tired and needed a rest. I was very happy with this improvement. It occurred a few times during that day that she was showing clear initiative.

The second surprise happened on the large trampoline. We climbed on it together and let Dejana lay down as years before. Than we helped her to stand up expecting her to fall on this unstable surface, but she didn't. She stood and kept her balance even when we started to jump around her. She really enjoyed herself as well as we did. We jumped for 20 minutes, laughing and singing and Dejana was balancing in the middle proud on herself. It proved again that she likes challenging situations so much that she performs them better then daily actions. I keep on thinking that girls with Rett syndrome don't get enough challenges in their life's even if it absolutely necessary.

And then we came by two clowns. Is was not very busy at “De Verbeelding” that day, so the clowns were there only for Dejana. It was fascinating to see how especially one of the two ladies made contact with Deja and told her a story without saying one word. De silent clown kept Dejana’s full attention for more than twenty minutes. She had a small bird that sang a little song, she laughed at Dejana, had a wooden box with beautiful little things in it and Dejana followed it all carefully. All the time without putting her thumbs in her mouth (stereotype), what she almost always does when she is not “at work”. They really were in contact with each other, looked in each others eyes, there was connection and understanding. The changing to the second clown was the break point. That act took only a few minutes but Dejana’s concentration was over. She stood up and…….. went to the first clown and gave her a little Deja-kiss. We were touched.

After all this exiting Experiences we finally finished in the relaxing room. Dejana laid on the large warm water bed and got her body massage. Her legs and feet got relaxed and than hands and arms. During the massage of her back she felt in sleep.
It was a wonderful day for her. Thank you Marijke for a nice present.

Life threatening breathing disorder ...

... of Rett syndrome can be prevented !!!!

A group of researchers at the University of Bristol have sequestered the potentially fatal breath holding episodes associated with the autistic-spectrum disorder Rett syndrome.

However, an international team of researchers based at Bristol's School of Physiology & Pharmacology have discovered a way to prevent these episodes of breath holding in a mouse model of Rett syndrome. Using a unique combination of drugs, they have discovered that the area of the brain that allows breathing to persist throughout life without interruption has reduced levels of a transmitter substance called aminobutyric acid.

Professor Julian Paton, who co-led the research, said: "These findings make a significant step in our understanding of the reasons why breathing is intermittent in Rett syndrome and give exciting hope for the future for alleviating young girls from these awful life threatening episodes of breath holding, which they experience regularly throughout the day."

This autistic condition is caused by a spontaneous mutation in the gene that encodes for methyl-CpG-binding protein 2 or MeCP2. MeCP2 is very abundant in the brain and is a transcription factor that decodes DNA essential for making proteins in brain cells.

The researchers found that by increasing both the amount of aminobutyric acid (a vital brain signalling substance) and stimulating a specific type of serotonin receptor within the brain to suppress the activity of brain cells that normally depress inhalation, this abolished the life threatening episodes of breathing arrests.

"These exciting findings are particularly relevant since the drugs we used already have approval for use in humans to treat other illnesses, so the hope is that our findings can soon be translated across to sufferers of Rett Syndrome, and possibly other breathing disorders" said Professor John Bissonnette from the University of Oregon who co-led the study.

The findings of the study, which was funded by the International Rett Syndrome Foundation and the National Institutes of Health, are revealed in a paper published by the journal – Proceedings in the National Academy of Science (PNAS).

More information: http://www.pnas.org/

Exercise and the Birth of New Neurons

It took decades of research to persuade scientists to give up their long-held belief that new neurons could not be formed in the brains of adults, but there is no longer any doubt about it.
It is now well-established that strenuous physical exercise stimulates the birth of new neurons in part of the brain that is critical for memory, the hippocampus.
Immature non-neuronal cells in the adult brain (glia) respond to protein growth factors that are generated in the body during robust physical activity. These growth factors stimulate the mother cells to spawn new neurons in the hippocampus. Amazingly, these nubile neurons then migrate through brain tissue to find their proper place in the neural circuitry. Even more remarkable, new research proves that the new neurons are then able to wire themselves into the existing network of connections to boost performance in memory, just like adding RAM chips does for a laptop. But why? Why should pumping muscles build more brain cells?

In the beginning human activity was be divided into two states: lounging and looking for food. Searching for food was the intellectual arena of cognitive challenge. The purpose of memory back then, as it is today, is to integrate novel information that is likely to be important to our survival in the future. This, the scientists suggest, is why the body hatches new neurons in the memory region of the brain when we exercise -- to better equip us for the cognitive demands of the excursion.

Building brains by exercise has been shown to provide animals with an increased cognitive reserve, meaning that after brain injury or disease that kills or damages healthy neurons, animals that have been forced to do reps on the exercise wheel before a brain injury, do far better in recovering. The animals forced to work out also have much slower cognitive decline in aging compared to sedentary cage-mates, because the loss of brain cells is a normal process of aging.

Surprisingly, the same drugs used to treat chronic depression have been found to stimulate the birth of new neurons in the hippocampus. This ancient biological connection between muscle and brain can account for how pumping iron could benefit our mental health as well as our cognitive health.....

Gerd Kempermann and colleagues at Stanford, the University of Zurich and Dresden, Germany, their recent paper published in the journal "Frontiers in Neuroscience."

http://www.livestrong.com/article/118785-exercise-brain-cell-growth/

Mechanism of Exercise-induced Neurogenesis

Exercise increases growth factors in the brain, such as vascular endothelial growth factor (VEGF) and brain-derived neurotrophic factor (BDNF), according to a 2007 literature review by Henriette van Praag. Both factors make it easier for new neurons to grow VEGF by increasing blood vessels and blood flow to new neurons, and BDNF by increasing the rate of neurogenesis.

Myths and Facts

This time my story is all made of quotes that are very close to my own thoughts.
I collected them from different Websites. They mention some of our prejudices / myths about people with special needs.
I hope these few examples can move us to find out what kind of prejudices we have. By correcting them we can make a friendlier surrounding for the people with different disabilities. It is worthy to think about it.

“Individuals with disabilities are people first, and like all people they want to be accepted and understood. They want other people to know that their disability is not all that they are. It is an inconvenience, but a disability need not be a handicap unless the environment they live in handicaps them with physical or attitudinal barriers.”

“When communicating with a person who experiences a disability speak directly to the individual, not to the interpreter. Treat a person with a disability as a healthy person. Because an individual has a functional limitation does not mean that he/she is not worthy of comunication.
People who are disabled think and feel the same as anyone but, the public seems to think that they should react to situations differently than other people do.”

Myth 1: Wheelchair use is confining; people who use wheelchairs are "wheelchair-bound."
Fact: A wheelchair, like a bicycle or an auto-mobile, is a personal assistive device that enables someone to get around.

Myth 2: People with disabilities are more comfortable with "their own kind."
Fact: In the past, grouping people with disabilities in separate schools and institutions reinforced this misconception. Today, many people with disabilities take advantage of new opportunities to join mainstream society.

Myth 3: Mentally retarded children are incapable of learning anything and so everything has to be done for them.
Fact: These children are capable of learning, although how much they learn and at what speed they learn may vary. The harder we work with them, the more they will learn and more independent they can become. There is no better solution to their development than working hard with them.

Myth 4: Children/people with disabilities can't learn.
Fact: When children with disabilities (even those with severe disabilities) receive appropriate instruction, they grow academically. As we learn more about how to best teach students with disabilities, their achievement and successes increase, as evidenced by the increasing number of students with special needs graduating from high school and going on to pursue post-secondary education

Myth 5: Your child needs a type of program or placement that isn't offered by your school district, so he or she will have to take what's available instead.
Fact: Your child has the legal right to a program that is suited to his or her individual needs, and in which he or she can make meaningful educational progress. If the district doesn't have such a program, it must take steps to make one available - even if that involves special arrangements or expense.

Myth 6: Your child has a severe disability, so he or she must be placed in a special "centre" for children with disabilities, or in a private school.
Fact: Your child must be educated with non-disabled children to the maximum extent appropriate to the child's needs. This means that, if your child could receive the services on his or her IEP in a regular school, the program must be offered there. Moreover, if your child could be educated with non-disabled children in a regular classroom for all or part of the school day, the district must so specify on the IEP and insure that such "main streaming" occurs. Only if your child's IEP cannot be carried out appropriately in a regular school should a special school be considered. And only if the child's needs cannot be met in a district or IU program can the district offer a placement in a private school.

(Brochure Developmentally Disabled Assistance and Bill of Rights Act, P.L. 101-496, and the P&A for Mentally Ill Individuals Act, Prepared by: Education Law Centre)

Myth 8: People with disabilities need sympathy
Fact: People with disabilities do not need sympathy or pity. They also don't need to be told that they are brave or courageous for living with a disability. Some young people with disabilities are brave, some are not, just like everyone else. People with disabilities do not need to be treated as children, they need opportunities to maximise their independence.

Fact: People with epilepsy are not "epileptics."
The word "epileptic" should not be used to descrbe someone who has epilepsy, as it defines a person by one trait or problem. A label is powerful and can create a limiting and negative stereotype. It is better to refer to someone as "a person with epilepsy" or to a group of people as "people with epilepsy."

Goethe:
Treat a man as he is, he will remain so. Treat a man the way he can be and ought to be, and he will become as he can be and should be."

Holiday (part 3) To be proud of

Other than the problems with the water, the physiotherapy, walking and sleeping went very well this time.
We even walked in the evening sometimes and sat on the terrace of the restaurant for a while. Dejana liked it extremely and looked at us with joy in her eyes. I think she was really proud to be between all this people and to look at the crowded boulevard, to drink (sugar free) juice and to eat a piece of sugar free biscuit. And people did not stare at us as usual and this made me also feel good and stress free.
Every morning after breakfast, we climbed a small hill in front of the hotel. It was a quiet and nice moment in the day to walk for a half hour up and down the steep path of that park and listening to an ‘early bird song’. At this moment it was warm but not so hot yet. I took some food from the restaurant and so we always got a company of a group of street dogs coming up the hill with us. Dejana liked them too.
Climbing was usually the biggest challenge for Dejana because of the different gravity power than during walking on the flat ground. For that reason I used to help her by pushing her from the back. And I did it this time too. Two weeks long. In the third week I just tried to let her climb alone and warned her that I will not help her anymore. It was a try and not a believe that she would do it.
But surprisingly for me .... She did it. All alone and happy. She walked very slow but with a correct body position and well coordinated too. I always considered this as more important that the speed. It was a moment of a private celebration. How can I explain this to anyone that does not have any experience with the Rett syndrome how great the improvements are that Dejana made???? So I was happy on my own.
And of course, the rest of the holiday she walked up the hill alone with more and more confidence in herself. Down the hill I still had to help her not to fall over.


In fact I wouldn’t have came to this idea if we didn't had a very energetic and pushing therapist.
An extremely professional and young lady in her 20ties, enthusiastic and a fighter. Miss Cristina saw after her first physio-session that Dejana could do exercises on her own. We only had to give her enough time to concentrate and plan her own activity. We also needed a strong motivator like a peace of fruit and a challenging therapist like Christina. Dejana walked on the stepping stones and over the obstacles without any support. She crawled over the high pillows, got up from laying to sitting, grasped a ball high and low (with weight on her arms), balanced on her knees and on one leg.
I was super proud and Dejana was too.
It didn’t matter how difficult the task was, she smiled with a pride if she succeeded.
And after every physio session she was significant more flexible in her all body and walked more upright than before the treatment. It is a temporary effect of course but still it is more than clear that movement does good for the girls with Rett syndrome. I do not have any doubts about this topic any more.
Two times of 30 minutes physiotherapy a day in the period of tree weeks didn't trigger any Vaslavas/epilepsy attack at all. That was a big improvement compared with a year ago.
“And she was better in coordination and understanding the tasks”, said one therapist who worked with Dejana last year. It was one more reason to enjoy the holiday.

Holiday (part 2): Water challenge

Well, this time traveling was an excellent happening for me. Normally there were two moments during the flight that always have been difficult for Dejana: when the plain gets up or down. The raising air pressure in the cabin is too unpleasant for her ears that she may cry or shout. But we found the solution! A hand full of raisons or several sugar free sweets do the trick. With this trick we can now land ‘successfully and "quiet", keeping the pressure on her ear under total control.
Eventually it ended in a good journey.
After a while we found our self's in the apartment of the hotel. We had two rooms, two bad-rooms and a small kitchen with an extra large terrace. All of it for us alone. This may only be a dream for the most tourists in the middle of the crowded high season. But I think that we deserved a dream holiday as we are en extraordinary family that carries the Rett syndrome in our baggage.
The holiday could finally start. It was summer, sunny and hot, just as I like it to be.
The most ideal place for all three of us was the large terrace. In this place we avoided the crowded beach and Dejana avoided the burning sun by laying halfway in the shadow. She could do this as long as she wanted. This time Dejana tolerated the sun much better and longer than ever before. She got a nice light brown color on her legs and back as they were exposed to sun but her arms and face stayed white as they were in the shadow all the time. Pity for this white parts! We would like so much that Dejana could get brown all over. It is very nice for me to see the brown color on the children along the beach. It belongs with the sun and summer. It is a sign of health to as I now realize. Children that are sick can't stay on the beach all day, they do not tolerate strong sun and they usually stay white all year long. It is something that I now know. Being outside, playing on the beach, swimming, jumping and getting color is the privilege of a good health. People with “usual-children” do not realize how happy they should be with this simple and ordinary things.
Anyway, we had enough sun on “our” terrace. And we had a therapy program for Dejana to. Because the hotel is a part of a spa we could do this program for three weeks. Dejana got a daily program that included manual massages, jacuzzi's, underwater massages and two times a day half an hour physiotherapy. And there was still plenty of time in betweens to rest, walk outside or to do whatever else.
We divided Dejana's therapeutic activities between the two of us. Her father took her to the massages and baths and I took her to the physio-sessions. I also went to swim with her later in the afternoon.
But now we are getting to the point of this story.
This time water was the extremely challenge for Dejana. And so, for us to.
Dejana likes to swim and we used to stay in the sea for more than an hour. Swimming and floating along the beach and looking at the children, who were playing with a ball or were jumping in the sea, is Dejana's favorite activity. We even had to laugh sometimes. So funny it was.
But.... the moments of getting in to the water and out of the water were not funny at all.
Dejana had Rett kind attacks called Vaslavas in almost all of this situations. Getting in & out of the sea, bath or pool caused big trouble for some reason.
And as it was a water holiday this happened all of the time.
We observed those moments very carefully and brainstormed about the problem from all sides, trying to find the reason for Vaslavas, but it was not that easy.
What we found is that getting in the water till the hips was not a problem at all. We could walk through the sea for an hour without any sign of an attack, but at the moment that Dejana got her upper body down the attack would start. I saw it as a raising pressure to her diaphragm and chest and gave provided a obstacle to the breathing. The Cranial nerves and the Brain stem again. Her father saw it as a strong reaction on the temperature changes between the air and the water. What it is we still do not know but we decided to work on the problem by repeating this kind of situations several times a week. That is our way of fighting the Rett syndrome. If there is a challenge do not avoid it but face it for as long as it becomes no challenge any more. Of course we will do this step by step in a controlled situation preventing Vaslavas and at the same time racing her sensory tolerance to such situation more and more.