Fragile x syndrome

[welshgirl]

Does anyone know anything about Fragile x Syndrome. One of my mindees age 2 has just been diagnosed with it and she is also under undergoing tests for autism. I have been contacting my LA for some advice but no one ever gets back to me. I just need some advice on the best activities to offer her. At the moment I am just following her interests, wheels, balls and sand. I would love to help her further but I just don't have enough info to do this. Even mum is struggling to get any help/advice, she had to pay privately to get a test and it is only because her eldest daughter is autistic that she found out about the condition.

[green puppy]

Sorry, don't really know much apart from what I just googled and read. There is a website that maybe useful www.fragilex.org.uk.

[Monkey1]

I work in a creche in Birmingham twice a year for the fragile x society. Not 100% sure on everything.........Autism is very common with children with it and speach is usually effected, a lot use Makaton. Boys are more effected than girls as it is all down to the x chromazone, girls have two, so less of an impact compared to the boys who only have one. Each case is different and they are all at different levels. The little boy i look after there is now 10. He chews his hands an awful lot, so much so he has callouses on them. He swings his arms around (think hes double jointed) and jumps up and down when excited....have to check hes in a clear space! He loves things with doors.,loves pulling his hand in and out etc he's big on ict and loves pushing buttons etc. He has very little speach and is in nappies. He has the most amazing family who are just wonderful with him and their other children. Its hard work but soooooooooooo rewarding. I'm impressed with how much he has come on each time i see him and his parents are keen to fill me in with his development. They are so proud of him and love him to pieces!
Are you anywhere near Birmingham as the Fragile x society has its conferance in June , i could ask my Creche manager if you could come in or i could try and get you some more information.

[Monkey1]

The link that Green Puppy just gave is for the society. Give them a call and explain that your a childminder etc and i'm sure they will send you loads of information!

[welshgirl]

Thank you for your reply. I'll give the fragile x society a ring tomorrow. Thanks for telling me about the conference, but I am too far away to attend, The little boy you look after has similar interests to the little girl I look after, she likes wheels turning them round and round with her fingers, or sprinkling sand between her fingers, she jumps when she is excited, and she rocks lots, not so much with me as she is only here one day a week, and is generally excited and on her feet, playing with sand and cars, but at home it got so bad that she had developed sores on her hands and thighs. She is scared of loud noises and strangers and will hide in a corner and be very quiet if she is not happy, but she never cries. Her speach is slightly delayed, but she is only two so its a bit soon to tell really. She has not had a diagnosis of Autism, as the doctors wanted to review in six months, but she has since been diagnosed with fragile x and her sister has aspergers syndrome. She is a joy to look after and I would love to give her evey best play opportunity I can, i'm sure that the fragile x society will be able to help. Thanks again.