hello my name is mike and i am looking to talk to other with who has a child with 1p36. i would also like to hear from other with kids around my sons age (13) we have just found out about 3 months ago that he has ip36 .
hi Mike,
Our daughter is 21 and was finally diagonosed about 5 yrs ago - after years of testing. She has a wide variety of problems both physical and intellectual however she is a very affectionate child who has the most amazing sense of humour and is the type of person who you either love or hate - no in between - fortunately most people love her. We just had her 21st birthday party and we were thrilled when we invited 95 people and 85 turned up!
We are from Australia however what questions do you have and I can give you our perspective. Our kids condition is still very unknown in Aust and I have only had contact with one other person here with this condition however the unique chromosone website based in england has a lot of useful information and a large network of people. I have had contact with people from Ireland, USA, england and holland.
Hope this helps
Robyn Hawke
hi i am looking for information on schools how did you handle the schools . to me they just dont seen to understamd seths need and how he learns.
Hi,
We sent our daughter to a special school that was for sensory impairment. Essentially a school for the deaf where she learnt sign langauge and alternative communication techniques. It was the best move we made as we tried to main stream her originally and it was a dismal failure as she learnt nothing but to misbehave. Her behaviour certainly improves when she can communicate as her receptive language is excellent. It is just her expressive language which is often the cause of her monumental tantrums.
We had to fight the education system to get her into this school as she is technically not deaf however we used the conductive hearing loss from chronic glue ear as the catalyst. Originally she was only accepted for a couple of years but then fortunately became part of the system and was able to stay. We managed to get the school changed from a deaf and blind specialist school to one for sensory impairment which helped to cement our place again. Our daughter only left school this year - went until she was 20 because we were able to argue that her constant hospitalisation - she has had over 40 general anaesthetics was impinging on her learning and that she was entitled to stay at school to make up for this lost learning. She is now in a community participation program 5 days a week where she does arts and crafts that they sell to the public. She absolutely adores it as she is extremely creative and she is doing things that she loves.