Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 <<it took another 4 years before I could *accept* the fact that he was autistic and that it wasn't going away...>>(Margaret) Wow can I identify with this and the " isolation " part ....shudder. You guys have probably had this conversation long ago but did you find the DS dx or the autism dx more difficult to deal with? It was strange for us but I was just thrilled to have a live baby when jamie was born so late in life for me and after miscarriages and all. The severe heart and stomach stuff was very very rough but I was ok with the DS dx...well, more ok than alot of people's stories I have heard. But when I found out for sure she was autistic I was totally devastated. I " knew " for some time before I sent in the Autism Research Institute F4 or F2 form, whatever, to fill out and have them send back with a " severely autistic " score. I think she was 4 then. When we got an " official " Neuro dx at age 10 (for services) that was a relief, but the first one was such a heartache and I know I was in denial much more than I was about the DS. Of course I had so many " professionals " encouraging the denial. If this was a recent discussion just tell me to " go look it up " :-) Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Sherry: I find the Autism hardest. I have said I would have 15 kids with DS for 1 with Autism (which really sounds terrible, but the behaviors are exhausting) and there is no cure in the near future. The DS is more medical I feel, (which still is quite difficult-but at least we know what is " went wrong " with our kids-meaning the extra chromosome). There is no explanation for the autism. I hope this came out right! Liz Re: Joan/dual dx > <<it took another 4 years before I could *accept* the fact that he was > autistic and that it wasn't going away...>>(Margaret) > > Wow can I identify with this and the " isolation " part ....shudder. You > guys have probably had this conversation long ago but did you find the DS > dx or the autism dx more difficult to deal with? It was strange for us but > I was just thrilled to have a live baby when jamie was born so late in > life for me and after miscarriages and all. The severe heart and stomach > stuff was very very rough but I was ok with the DS dx...well, more ok than > alot of people's stories I have heard. But when I found out for sure she > was autistic I was totally devastated. I " knew " for some time before I > sent in the Autism Research Institute F4 or F2 form, whatever, to fill out > and have them send back with a " severely autistic " score. I think she was > 4 then. When we got an " official " Neuro dx at age 10 (for services) that > was a relief, but the first one was such a heartache and I know I was in > denial much more than I was about the DS. Of course I had so many > " professionals " encouraging the denial. If this! > was a recent discussion just tell me to " go look it up " :-) > Sherry > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Honestly....neither of Andy's labels...or should I say none of his four " labels " have upset me in and of themselves. Each one defines him and answers questions that imapact our lives, negatively, in a dramatic way. I am relieved to be able to get others " on board " to do what's right for him. If it takes a label to do that, so be it. Each time, I have been advocating for what others fought against for him until the label is applied. It's stupid. Do what's right to support the kid. Do not support people by labels!!! Having said that, of the four labels - Down syndrome, autism, nonverbal, and celiac disease - I would give up the autism hands down. Working with hundreds of young people (of all ages and stages) with Down syndrome, I have to say that the autism is what breaks my heart for Andy. But no one " label " devastated me. the isolation as we tried to figure it out (and he bit me to smitherines) and the lack of support is what devastated me - and still does. I still yearn for people who WANT to be with Andy. He's a good kid. And will do it without me paying them to. We had that for a brief time when Remus and his wife lived here. For a short period of time...I had a social live, company, an dpeople who didn't quesiton anything .... they just laughed along with us and included Andy in each and every moment. I miss that. j __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 > > Honestly....neither of Andy's labels...or should I say > none of his four " labels " have upset me in and of > themselves. Each one defines him and answers questions > that imapact our lives, negatively, in a dramatic way. > I am relieved to be able to get others " on board " to > do what's right for him. If it takes a label to do > that, so be it. Each time, I have been advocating for > what others fought against for him until the label is > applied. It's stupid. Do what's right to support the > kid. Do not support people by labels!!! > > Having said that, of the four labels - Down syndrome, > autism, nonverbal, and celiac disease - I would give > up the autism hands down. > > Working with hundreds of young people (of all ages and > stages) with Down syndrome, I have to say that the > autism is what breaks my heart for Andy. > > But no one " label " devastated me. > > the isolation as we tried to figure it out (and he bit > me to smitherines) and the lack of support is what > devastated me - and still does. I still yearn for > people who WANT to be with Andy. He's a good kid. And > will do it without me paying them to. We had that for > a brief time when Remus and his wife lived > here. For a short period of time...I had a social > live, company, an dpeople who didn't quesiton anything > ... they just laughed along with us and included Andy > in each and every moment. > > I miss that. > > j > My Matt is Downs/Autistic/Nonverbal/OCD I don't mind the fact he is downs and autstic and all the query behaviors that come out of it. The only thing that really bothers me is him being nonverbal.. We do PECS ,some signs, ACC device..but its not the same. I would really love to hear what has happened at school,but his world is silent and full of mystery. > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 In a message dated 4/8/2006 6:30:20 P.M. Eastern Standard Time, sewshawna@... writes: the ds dx was the hardest for me to deal with, i was only 20 when i had nathan and he was my first, took me months, i kept crying even when i fed him, as the the autism dx when he was 3-4yrs old i was like oh, that is why he does that, i had to read about autism after the docs told us about it, i didnt have the slightest clue about autism with ds, and the rest is history. shawna a, interesting. I'd say learning about the DS was the toughest for me too, but I was WAY older than you (34). LIVING with autism is harder. That's the difference for me. *I* was the one saying, IT'S AUTISM, WORLD!!!!!!, so it felt more gradual than learning about the DS....*I* had to figure it out first. Course, once I said the words, the rest of the world was like, " OH YEA " ....LOL I am guessing that you and Leah are our youngest Moms!!!!!! I mean age when had baby with DS. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 the ds dx was the hardest for me to deal with, i was only 20 when i had nathan and he was my first, took me months, i kept crying even when i fed him, as the the autism dx when he was 3-4yrs old i was like oh, that is why he does that, i had to read about autism after the docs told us about it, i didnt have the slightest clue about autism with ds, and the rest is history. shawna --------------------------------- Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 Donna: I was 42 when I had Miss Tori. Her sisters are 26 and 20. Liz Re: Joan/dual dx > > In a message dated 4/8/2006 6:30:20 P.M. Eastern Standard Time, > sewshawna@... writes: > > the ds dx was the hardest for me to deal with, i was only 20 when i had > nathan and he was my first, took me months, i kept crying even when i fed > him, as > the the autism dx when he was 3-4yrs old i was like oh, that is why he > does > that, i had to read about autism after the docs told us about it, i didnt > have the slightest clue about autism with ds, and the rest is history. > shawna > > > > a, interesting. I'd say learning about the DS was the toughest > for > me too, but I was WAY older than you (34). LIVING with autism is > harder. > That's the difference for me. *I* was the one saying, IT'S AUTISM, > WORLD!!!!!!, so it felt more gradual than learning about the DS....*I* had > to > figure it out first. Course, once I said the words, the rest of the > world was > like, " OH YEA " ....LOL > I am guessing that you and Leah are our youngest Moms!!!!!! I mean age > when had baby with DS. > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 I was 40 when I had Mic hes my only child and the autism was much harder for us.I think after the heart problems and ds we figured we were only going up from there and then autism how could that happen.I was devastated and because there were no whys is it genetic is it mecury is it environmental what causes it.I knew I was taking a chance for ds because of my age but I had no clue what I did to cause the asd. I dont feel that way anymore but it took awhile for me to grasp. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 the autism is hard to deal with i agree there, i just had a harder time withthe ds. I catch myself now and then wish nathan didnt have the autism too, there is a bay the same age as nathan with ds, and he does all the regular classes, can read and write etc, sometimes i wish nathan was like that, but then he wouldnt be my little nathan guy that he is, and i love him soo much as we all do our children. shawna --------------------------------- Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 the ds dx was the hardest for me to deal with, i was only 20 when i had nathan and he was my first, took me months, i kept crying even when i fed him, I agree that the DS diagnosis was most difficult for us as well, I was 18 when I had Dyl & his dad, 19 (amazingly enough we got married AFTER that & are still married, 10 years now). Everything after that I guess was just like, oh gee, what now, let's get used to this & learn how to deal with it. Second most difficult after that was the diabetes diagnosis. The heart problem/surgery was rough, but not horrible. The ASD diagnosis was like THANK GOODNESS there's a reason why he's like this & we just weren't horrible parents all along & not teaching him the right things. It still sucks, don't get me wrong, but it was more of a relief, mentally for us. Becky mom to Dylan, 10 DS,Diabetes,Autism --------------------------------- New Yahoo! Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
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