Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Welcome! There's a ton of information and support here. Where do you live? Do you have other children? Have a great day. - Theresa ________________________________ To: Sent: Tue, November 30, 2010 10:46:19 AM Subject: Hi - New member Hi all, My name is Sam and I have a 5 yr old daughter named Jasmine who has Down Syndrome, West Syndrome, ASD & Trichotillomania. We only got the ASD diagnosis back in June, so we are still reeling a bit. DS seems like an old friend in the face of this new challenge. Jazzy has also pulled out a large amount of her hair, but no-one seems to have any help or advice on that score. She isn't suitible for Cognitive Behavioural Therapy as she is largely non-verbal and anti-depressants are not recommended. It seems as if we have been left to deal with this new diagnosis with the minimum of support and we don't know where to start. On the plus side, she started at a school for children with severe learning difficulties in September, which she loves. I look forward to getting to know you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Hi Sam, Welcome to this list. We all get nostalgic for those days when DS seemed like our biggest challenge. I think most of us find autism is really our child's primary diagnosis and the truth is that many Dr's and therapists don't know what to recommend. This list is a great source of info, but take our advice and filter it to decide what you think is best for your family. Our son Darwyn (6) is non verbal also (although he now " sings " which sounds something like a dying humpback whale and he also says " eeeeee " for sleep, Barney, and ice cream). We've had real success beyond what I ever could have imagined with using pictures for communication. We specifically started with the PECs system which I could send you more info on if you like. We also have therapists and his behavior interventionist (the person with less training who actually works with Darwyn on his therapy programs). They use a sort of modified Behavioural ABA approach which means incremental learning with lots of repitition, but its all mostly fun. If your daughter loves school you are lucky. Darwyn loves school also (he has a trained aide and he loves the routine). Definitely school should approach Jazzy from the " autism " perspective to get the best results. Darwyn's preschool teacher spent a year teaching him to do a puzzle! I don't have that kind of patience, but thank God there are teachers who do. Take care, , Mom to (age 10 NT) and Darwyn ( age 6 DS ASD and a few heart surgeries) , Canada Sent on the TELUS Mobility network with BlackBerry Hi - New member Hi all, My name is Sam and I have a 5 yr old daughter named Jasmine who has Down Syndrome, West Syndrome, ASD & Trichotillomania. We only got the ASD diagnosis back in June, so we are still reeling a bit. DS seems like an old friend in the face of this new challenge. Jazzy has also pulled out a large amount of her hair, but no-one seems to have any help or advice on that score. She isn't suitible for Cognitive Behavioural Therapy as she is largely non-verbal and anti-depressants are not recommended. It seems as if we have been left to deal with this new diagnosis with the minimum of support and we don't know where to start. On the plus side, she started at a school for children with severe learning difficulties in September, which she loves. I look forward to getting to know you all. ------------------------------------ -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/ -------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Hi Sam: Have all medical reasons for hair pulling been ruled out? I have two boys with DS and PDD. They are 13 and 12. When the 12 year old had strep but no sore throat, he pulled out an big circle of hair (more than a silver dollar) on one side. On the other hand, I know some kids just struggle with this. I had to look up West Syndrome. Are her seizures controlled? I'm glad Jazzy likes her school. Where do you all live? Different states have different opportunities. We might be a bit more helpful if we knew where you all are from. We are from Madison, Wisconsin. Welcome! Lori Mom to Isaac 13 and Tony 12 _____ From: [mailto: ] On Behalf Of E Sent: Tuesday, November 30, 2010 9:46 AM To: Subject: Hi - New member Hi all, My name is Sam and I have a 5 yr old daughter named Jasmine who has Down Syndrome, West Syndrome, ASD & Trichotillomania. We only got the ASD diagnosis back in June, so we are still reeling a bit. DS seems like an old friend in the face of this new challenge. Jazzy has also pulled out a large amount of her hair, but no-one seems to have any help or advice on that score. She isn't suitible for Cognitive Behavioural Therapy as she is largely non-verbal and anti-depressants are not recommended. It seems as if we have been left to deal with this new diagnosis with the minimum of support and we don't know where to start. On the plus side, she started at a school for children with severe learning difficulties in September, which she loves. I look forward to getting to know you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Sam - welcome to the list. Sam was my nickname when I was a young working person- many years ago!! Would you hare with us a little more about yourself, family? Where are you located? Do you have other kids? I am the mother of 6, now a retired nurse. Elie, our youngest is 25yo and has DS/asd. He lives with his friend who is his paid companion. They rent a town house together in a nearby community. My other no longer children are 43 yo twins, 40 mother of 2, 37 you newly married son, and 30 yo married son with 2 kids. We live in the North GA mountains, about 1 hour from Atlanta. Elie had his last year of FAPE here in GA - probably his best year of school since early elementary. On Tue, Nov 30, 2010 at 11:51 AM, Theresa Danner wrote: > > > Welcome! There's a ton of information and support here. Where do you live? > Do > you have > other children? Have a great day. - Theresa > > ________________________________ > From: E <samanthaeaton@... <samanthaeaton%40yahoo.co.uk>> > To: > Sent: Tue, November 30, 2010 10:46:19 AM > Subject: Hi - New member > > > Hi all, > > My name is Sam and I have a 5 yr old daughter named Jasmine who has Down > Syndrome, West Syndrome, ASD & Trichotillomania. We only got the ASD > diagnosis > back in June, so we are still reeling a bit. DS seems like an old friend in > the > face of this new challenge. Jazzy has also pulled out a large amount of her > > hair, but no-one seems to have any help or advice on that score. She isn't > suitible for Cognitive Behavioural Therapy as she is largely non-verbal and > > anti-depressants are not recommended. It seems as if we have been left to > deal > with this new diagnosis with the minimum of support and we don't know where > to > start. On the plus side, she started at a school for children with severe > learning difficulties in September, which she loves. > > I look forward to getting to know you all. > > Quote Link to comment Share on other sites More sharing options...
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