The story of Noah
Our son Noah was born in midsummer 2002. It was a tired little boy that came to us. The first month past without any suspicions of that something should be wrong. Noah has always been a food lover, so he grows up very fast to a round little kid. By the end of his first year we start feeling something was wrong. He had not the same “speed” as other kids. But we really did not want to believe that he was different. He sat and crawled at normal age, but started to walk at 17 month. Which is not unusual that boys start to walk later than girls do.
At 14 months of age Noah began at the day nursery and we noted that he was not as active as the other children. Both we and the child-minders thought it maybe was because of his overweight. The years past and Noah was moved to the 3 – 5 years group. The staff on this group soon noted that Noah did not follow the other kid’s development. He was not “involved” in the spontaneous play and he used advanced words when he was speaking. In addition he was dribble a lot. It was not unusual that he lay down on the floor and cut him self of the surroundings when it went to confusing. At this time the staff reacted and proposed that we should do an investigation on Noah. This came as a total shock for me and Lisa, al thought that we deep down in our minds knew that something was wrong. It felt like the whole world fell apart.
The investigation started with a play observation 13 June 2006 (WPPSI-III), just before Noah’s 4th birthday.
The results appear that Noah had autistic character and probable mild mentally retard. But no diagnose was appointed. The 7th February 2007 Noah left a blood test. Approx 4 months later we were informed that he had a small part missing on the 17 chromosome. They told us it was a very rare diagnose with only a few known cases in the world. He was finally diagnosed with the Microdeletion 17q21.31 in March 2008.
Noah can be described as very social and friendly boy with a limit of patience. He often walks on his toes and he is over agile in the joints. Most of time he needs to be guided and at the preschool he has a personal assistant. He is flabby in the face so there is a lot of dribble, (Not so much today), and he has a slur pronunciation. Noah has problems with the mutual in the social teamwork. For example he can ask anyone for a hug or wants to know their name. We try hard to make him just say hello and ask for hugs to people he knows. There is also a passion for music and he has a good tactfulness, (often using his drums). He usually to have two fingers in his mouth and one finger from his other hand twisted in his shirt.
His strength is the vocabulary, the will to learn, the memory (he never forget a promise), and he is almost never sick. Some of the weakness is foremost the ability to understand the underlying in a message. He has very sensitive ears, low concentrate and endurance level.
A big challenge is Noah’s obsession about food. When he doesn’t have all the attention he runs to the refrigerator and take the first eatable thing that he sees. But he is very honest so afterwards he use to say “-what did I take in the refrigerator?” He often eats very fast. We work hard with this behaviour.
To make the communication easier between us and the preschool we have this diary were we put in photos of what Noah has done over the weekend. And they have a similar at the preschool that describes what he has done there. On the base of these pictures we can discuss with Noah. We also have a week scheme at home were we put pictures of what is upcoming because it is very important for Noah to be prepared. Sometimes when there are things he does not understand with words, we take a pencil and a piece of paper and draw the explanation. It often works on him. We have also learned that he “takes in” more if he had some kind of reward waiting for him.
Recently Noah started to read letters and he can now read small words. That’s a great milestone for him.
Next year he will go to a special school.
There is a lot more things to write but I think we get the most important.
Submitted by: Reine and Lisa parents of Noah. (Sweden)