This is the story of Luis, who lives in Amsterdam. Luis is a "classical" Angelman, he has a deletion. Luis is 7 years old and follows the method of contact and focused learning. That method was developed for autistic children, but is also good to help children with Angelman syndrome: the children are challenged to learn by first establishing a connecion with them. His mother, Sabine Liermann, has found 7 people to play and learn almost daily with Luis. "It was the ophthalmologist who for the first time mention Angelman syndrome dropped, when Luis was one and a half. We visited the doctor, as Luis was squinting, something quite common in Angelman children. The doctor knew about this. We had realised that something was not right. Luis could not walk and he did not move, as he should do according to us. But it was our first child, so we had no way of comparing. His first steps Luis took three months before his third birthday. In December 2008 Luis will turn 8. Meanwhile, he still can not talk, but he can already say a few words such as 'drink' and 'car'. He also has learned to point with a single finger, something which is very difficult for Angelman children. This allows him to improve to communicate what he wants.

Luis spent some time received remedial teaching, along with a few autistic children. By gathering more and more experience and knowledge about autism and its approaches, one year ago we got into contact with Anneke Groot and CSL (contact directed play and learning). CSL is largely based on the SonRise©-method. This method was invented by Barry Neil Kaufman for his autistic son. He wrote a book about it: "Broken Silence". The basic idea is that you let the child make contact with you, not vice versa. You sit down beside the child, not too close, and you do exactly the same as the child, for example by turning the wheels of a car. At a certain point in time the child will discover, that you are doing the same as it and it will try, if you continue to do so. You wait until it looks at you. That is the way the child itself initiates the contact. That is the way the child initiates itself contact, a basis to get closer together and to play together. Angelman children have similar problems as autistic children (For example, no language, concentration problems, dyspraxia, difficulty in having eye contact, following others in their action, and especially they have problems with copying others). That is why the therapy works well with them. We spent hours with Luis looking out of the window, playing with water and tearing paper.
If you have contact and can play together, you can also teach your child something. In children with Angelman syndrome the fine motor skills are not so well developed, as the gross motor skills. For a good long time Luis did not have a good body awareness and did not feel his legs and arms very well. He therefore also had great difficulty to learn how to hold a fork and eat. To improve this I put some pieces of bread on a fork and held it infront of his face. Only when he moved his arm in the direction of the fork, did I move the fork to his mouth. Once that went well, I put the fork in his hand and guided his hand to his mouth. After some time I reduced my support of his arm and finally he himself moved the fork to his mouth. I then pushed against his hand . That sounds mean, but in this way he felt his hand better and knew in which direction he had to move it. Important with this therapy is that you always set clear goals, such as learning to eat, but don't get frustrated when you don't achieve them at once. That is difficult and you need to learn this.

To allow for Luis to express himself better, I have hung a blanket on the wall of his playroom. On this blanket I stuck with Velcro tape pictograms of books, animals, games and so on. If he wants to read, he picked the pictogram of the book. He can now also communicate fairly good 'yes' and 'no' by indicating this with a pictogram.

Due to problems at school we started a complete learning program at home. I had found 7 people that played and taught with Luis. They come every day, except on weekends. Two people a day, morning and afternoon. I pay them for it, because it is hard work and these people have a good education. I can pay as Luis gets a so-called "personal budget". Everyone always begins with reading the report of the previous days. In this way we ensure that we are following an ongoing program. Each month we come together to discuss progress and problems.

We do contact oriented games with him. We always try to figure out what he likes, in addition to looking at books. That is difficult, because he can't participate in very many games. We have found a few and we have made pictograms. He can point to the required game. At this time, he loves to tikle, play hide-and-seek and a sort of catch. Between the games we then we give him exercises, make hime point out something or let him copy something. In this way he learns by playing. If you see how his life and development spped have increased, which you may never have dared to expect, it is suddenly much easier to let go and just enjoy your child.

There are times that Luis would not point at anything. I did not understood why. It is difficult to understand that with someone who can not talk. Eventually I got the advice from Ludo Vande Kerckhove (specialist for facilitated communication) to ask complicated questions. So not "Where is the cat?" to let him point to the cat in the picture, but for example "What swims in the sae" or "What can you drink?". When I did this, it worked much better. The level was higher, he was challenged again and he enjoyed it again. Luis has since built up a large passive vocabulary. We try to keep that, by always writing down what he knows.

He also pratices with sounds and words. He knows that we get excited when he makes sounds. Sometimes I hear him the morning in his bed producing sounds. I always try to give meaning to his sounds, so he feels that we understand him. He can already say 'Ernie', the name of his favorite teddy bear. You obviously hope that he also will say "Bert", but he does not do this yet. He is extremely brave. Sometimes you see that he gets frustrated, but it always passes over. I find that incredible.