Guest guest Posted September 9, 2007 Report Share Posted September 9, 2007 my son is 15 mds I also have 3 other kids 24 23 16 these are all girls. I do want to met some parents of kids with mds My son was born in albany med they told me he was the first kid in 20 years that they have seen with this. Emma Reynolds wrote: Pam, I have a 16 year old with MDS. Whilst I have had (up until now) quite a lot of support and help in raising Louise, I can relate to that feeling of aloneness. She is now entering a very interesting part of her development, her autonomy and independence. With Louise, it is hard. She is so high functioning u forget there is a little " challenge " and let down your guard then she does something like cleaning the bath tub out with the vaccume whilst there is water still in the tub.!! I couldn't get upset with her as she was doing what she was told. In most situations, this is the case, ie she is doing what she is asked,, so u can't get mad at her, just yourself for not being more specific in the steps of what needs to be done. Yes, it is a challenge. Raising a teen is a challenge without the additional challenges of haveing a disability. I am, however very fortunate as I have become a part of a fantastic church and get support and encouragement from most of the congregation. I am extremely happy there and will eventually become a member. I would love to swap stories and stuff with you. I may not be a ble to help much with lou being a girl and your son being a boy, but I will do my best. I wish u all the best Emma. Mum to My2angels 19 and Louise 16 MDS --------------------------------- Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
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