Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Hi, ! Your post caught my eye because we're neighbors! Don't know where in Orange County you are, but we live in Lakewood, just north of Long Beach. My Nicolas is almost 10 and I've had the same experience as you as far as not fitting in to either Down Syndrome or Autism groups. I was wondering if it'd be all right to e-mail you privately and exchange phone numbers. Maybe we could start our own group of two... Carole mom to Nicolas ds/asd/celiac, almost 10 and , almost 4 Mike & Petricig wrote: > Hi 's Mum (and everyone), > > Your sounds allot like my . He just turned 6 in > November and is a 2 year old developmentally. He is not social with > other kids but does very well with adults. He is nonverbal. I never > thought I would say that I wish he was a typical Down Syndrome kid but > with the dual dx that looks pretty good! I can't really say about the > vaccines since I had no way of knowing what is Down and what is not ( > is our one and only child). has a lot of sensory issues and > my husband felt they were enough to pursue the second dx. It's tough > because I don't feel I fit in the Down Syndrome group or the Autism > group. Both sets of kids I know seem to be higher functioning. > seems like a mystery. no program or dx seems to fit him. I wish I had > a " Manual " because of his poop issues we can't seem to solve and > nothing REALLY motivates him. He's just my beautiful, easygoing > mystery guy. > > , Orange County (where it does rain!!!!!!!!!!!) California USA > Re: New here Help > > > > Hi Hannah's Mum > I'm 's Mum and we too live in the UK in Middlesex. Let me > tell you a bit about , he is 7 years old and has DS and ASD. > Up until the age of about 18 mos he seemed to be progressing well, > starting to make sounds such as Mama and Dada etc. Also quite adept > at building blocks, sorters etc. However from the age of about 2 > this all seemed to stop overnight. Do you mind me asking whether > Hannah has had a MMR jab - I realise that there is no confirmed link > with autsim and the jab but it did very much coincide with Wills > developement stopping. We didn't really understand what was > happening and as he was our first child and at the time didn't know > of any other children with DS in our area we weren't sure what to > expect anyhow. > > When he still wan't walking at 2½ years old, we took him to the > Downs Syndrome Association facility in Portsmouth where we met with > Dr Sue Buckley - she believed that autism was his main area of > concern which came as a complete bolt out the blue to us and > completely broke my heart again. Eventually after a long battle we > got referred to St s Hospital in London where after 2 days of > tests they did confirm that Wills was at the lower end of the > autistic spectrum. Sadly since then we have had no support at all > from the ASD side of things. He does attend a special needs school > whic although is excellent, I have to fight for every bit of speech > therapy and it is an ongoing battle. He has no verbal communication, > although when prompted will say More, Dada, Nana, Mama but not > voluntarily. Wills is still very much a 2 year old in a 7 year old's > body. Although every little bit of progress is a huge testament to > his character - Will by name - strong Willed by nature!! > > I can truly understand what you're going through at the moment, you > really need to push for an evaluation from a specialist in this > area. Don't be fobbed off. I myself feel very isolated as although > I know other parents who have children with DS, none of them have > the dual diagnosis, and I completely understand how you feel - its > so frustrating seeing other kds with DS at his school, talking and > communicating and interacting, whereas Wills is quite an isolated > little boy who actually seems to prefer being with older children or > adults than children of his own age. > > I'm not sure if this is permitted by the site, I'm sure they will > tell me if not, but if you want to email me directly, I'm happy to > give you my number - maybe it will help to talk. > > Hannah is no doubt a beautiful child, as is Wills, and this is what > we need to keep uppermost in our minds at all times no matter what > frustrations lie ahead. > > This is the first time I have posted on this site - would be > grateful to hear from anyone else in the same situation! > Keep smiling - take care > > > > > > > -------------------------------------------------- > 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...
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