Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Liz, I have thought of joining our local autistic group.I talkied with the lady who started the group and she has been very helpful.Our local DS group 2 months ago tried to start a group within our group for dual diag but only 3 of us showed up.I think that autistic kids are more like our children but unless the child is both no one understand the walls we hit with trying to help our kids.I am sorry that the parents you came in contact with had tunnel vision.These people have hope that one day their " normal " child will return. While we are hoping for lots of improvement so our children can just a be a regular normal child with DS.Tori is a great poster child and I am glad you saw the need for our support group. I wish so much I could have come to the picnic I cried when I saw the video.Maybe someday we will be together. Thanks for trying to get so much information all the time to help this group. Cyndi > Irma: > > I am so sorry you had a rough time at your DS conference. I think becoming an advocate for the DDx in my community and within my local DS group has helped me in dealing with other families with just the DS dx. I have pushed the issue greatly, and they have been very understanding and open about promoting the DDx to other families. Tori is the first child in our group to have the DDx and she is now, excuse the phrase " the poster child " for DDx here. I know of 5 other families within my group whose child should have the dx and don't. I think my being so outspoken about Tori's dx has helped me deal and let's the others know that. although it is not a dx we wanted, we have it and have to move forward. > > I had the worst experience ever when I went to the local Autism conference this year. Although I picked up alot of helpful information, I left there in tears. The parents there were so much like their kids. They were not very social. I tried to mingle but felt like an outsider. At any DS conference I have ever attended, the families were so very welcoming, social, and willing to talk. At this conference...the families were very " tunnel minded " if you get what I mean. I later figured out why. I think because when their child was born, he/she was a typical child that they lost that child somewhere down the line. We, as parents of kids with DS, never had a typical child, and the dx. of autism just complicated our lives so much more. > > I think our best weapon is our mouths. We are all in the same boat and the more we promote the DDx, the more people will be understanding of it and understand that our lives have been turned upside big time, once again. > > Love, > Liz > Joan > > > Hi Joan, > Have you met Peoples (Keynote Speaker)or Craig Blackburn > (Motivational speaker)at any of the Down syndrome conference? > Today, I had the opportunity to hear them at our 3rd Annual Down > syndrome conference. I really enjoyed hearing them. > 's presentation was on " Applying an Understanding of How Children > with Down syndrome and Other Developmental Delays Learn. > They were awesome! > > Peoples: http://www.specialoffspring.com/ > Craig Blackburn: http://www.craigblackburn.org/ > > It did feel different attending once again. Sorry unable to describe > this feeling. Its just a mixture of that grieving moment or once again > not really fitting in too much, felt odd but proud of how so much is > out there compared to when was younger. I did purchase a couple > of t-shirts for and I, that says " HUGS are found on the 21st > chromosome " . > I did meet a mom who has a youngster with DS whom is a runner, boy was > she just going on and on how she was glad that she sat at my table when > I had shared a wee bit of my story. > Two other moms were mentioning about their babies with Down syndrome > and their other kids were diagnosed with Aspergers. They were loud so > had to hear them share their stories. I had just stayed mums. > > Irma,18,DS/ASD > > > > > > Quote
Guest guest Posted September 18, 2006 Report Posted September 18, 2006 Cyndi: It is hard to start a sub group with some few kids being diagnosed. That's why I love this group. I just keep pushing the fact that the 2 syndromes can co-exist. As far as the Autistic side, I now prefer to do my own research and get my own info. I have a few connections in the Med. world regarding this and they keep me pretty well informed as to what is happening in the research end of things. Liz Joan > > > Hi Joan, > Have you met Peoples (Keynote Speaker)or Craig Blackburn > (Motivational speaker)at any of the Down syndrome conference? > Today, I had the opportunity to hear them at our 3rd Annual Down > syndrome conference. I really enjoyed hearing them. > 's presentation was on " Applying an Understanding of How Children > with Down syndrome and Other Developmental Delays Learn. > They were awesome! > > Peoples: http://www.specialoffspring.com/ > Craig Blackburn: http://www.craigblackburn.org/ > > It did feel different attending once again. Sorry unable to describe > this feeling. Its just a mixture of that grieving moment or once again > not really fitting in too much, felt odd but proud of how so much is > out there compared to when was younger. I did purchase a couple > of t-shirts for and I, that says " HUGS are found on the 21st > chromosome " . > I did meet a mom who has a youngster with DS whom is a runner, boy was > she just going on and on how she was glad that she sat at my table when > I had shared a wee bit of my story. > Two other moms were mentioning about their babies with Down syndrome > and their other kids were diagnosed with Aspergers. They were loud so > had to hear them share their stories. I had just stayed mums. > > Irma,18,DS/ASD > > > > > > Quote
Guest guest Posted October 1, 2006 Report Posted October 1, 2006 Hi, Everyone....Joan....thanks for that info. I sent it on to our ARC lady, Ellen. Have you had time in your busy schedule to do a brochure for the Buddy walks? I wish there was a way the rest of us could help you. Take care, Everyone. Margaret Quote
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