Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Welcome !!! Glad to have another little girl on board. Hang in there and just cry it out...it's ok. We all did it and it really is true it will get better. Knowing the truth is always (eventually) better. I too was devastated by 's autism dx...not so much the DS and she also is an only child so I've done the same self blame thing about that. again welcome to the group. Sherry mom to 18 DS-Autism Crohn's and B12 anemic AGAIN! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Welcome ! We have all been there, that is for sure! We do a lot of cheering on, lifting up, crying, and trying to let go on this site. It has been the best place for me. I hope you will find out lots of information from everyone so that you can stop blamming yourself! We do what we can and when we can. We are all here for each other and that means more to me than anyone can know. Holly Mom to Jake, 8, ds & PDD, and Mia, 10....just typical! Introduction Hello everyone, I'm , husband is Ray, and our daughter is Anne. She's 10 years and the school pysch evaluator tested her as being high on the autistic/asperger's domains. What ever THAT means! It was brought up to us a while ago that she might be autistic as well as having DS, but we just thought it was Annie being Annie. I read the Disability Solutions newsletter about DS and autism, and realized the school is right.(don't tell them I said that!) She loves to just feel one of her soft rag dolls feet over and over, she does the hand flapping, and even though she makes eye contact and can be very loving at times, she often doesn't respond to questions (unless you repeat it 5 times), and would much rather be alone, watching videos. When she does talk, it's just movie scripts, and usually the same 5 or 6 lines over and over. I guess I should be glad for the diagnosis, I've been blaming myself because she's an only child (had 3 miscarriages before I had her, no pregnancies since) and I don't get her out and around other people enough. But it still hurts, and at first I couldn't stop crying. I think I never really dealt w/ the dx of DS, so this has shoved reality in my face and made me look. Well, enough of the pity-party. I just wanted to introduce us and let you all know I've been lurking. It's nice to find a place where others are dealing with the same stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Holly cow, Bob Black, it is good to hear from you again. It seems like we keep battling the same issues. I will send you a private email to get an update on Charlie. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Liz from TN: My name is Liz from PA. I think we may need to identify ourselves a little better...alot of same name people showing up! Anyway, WELCOME!!!! I have been on this fabulous site for 4 years and it has been a life saver to me. The families here are our family too! Our Tori just turned 8 three weeks ago. Tori was born with congenital cataracts (non-DS related), PDD-NOS, ODD, OCD, Hashitoxicosis..I think that's it. =) Welcome again! LizPA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Liz- welcome to the land of perseverative behavior! I am sure just reading on this list will answer many of your questions. Scroll thru a few months of messages at the yahoogroups.com page and you may find more. My son was not dx until he was between 10-12. Getting an early dx is great because you have so much more time to mediate his environment and help him make sense of his world. Finding our if your son has sendory issues (my guess i great ones since he mouths, grinds teeth and shakes his babies. BTW - my son stopped mouthing things at about 3 and now puts nothing in his mouth unless it is food he recognizes. But he is still testing out babies to make sure they shake just right. He also rocks but doesn't spin. One of his favorites which he finally got over was floating things over an air vent . HE also was a wanderer and is still a sundowner. > Hi Everyone! > > My name is Liz and I have two sons, age 7 and Aidan > age 5. Aidan has down syndrome and was just official diagnosed with > autism about 2 weeks ago. I was lucky enough to find another mom > through my son's therapist who also has a child with DS and ASD. > She told me about your wonderful group. At this point in time my > husband and I don't know what to do next. I know we need to set up > an IEP meeting with the school. Aidan's preschool teacher is > working on that. Here is some info about my little guy, Aidan. > Aidan loves mouthing on everything, grinding his teeth, shaking > stuffed animals that have long arms and legs, playing with > shoelaces, plastic tubing, belts, occasionally spins around, and > loves watching the Wiggles over and over again. There's more but > that's all that comes to mind right now. I guess my problem now is > that I don't know where to begin. The pyschologist we saw did > include several books and websites but they are all just for kids > with autism not the dual diagnosis. I am hoping you all will have > some suggestions. Oh, and Aidan was tested for celiac disease a few > years ago and doesn't have it. > > Looking forward to hearing from you all! > > Liz > Nashville, Tennessee > > > -- Sara - Life is a journey- we choose the path. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.