Guest guest Posted March 9, 2001 Report Share Posted March 9, 2001 > . < this board has been a godsend for me. Even if I don't > have the energy to post, I still read the messages and it makes a big > difference! I have come to consider people on this board " friends " and > they > are very important to me. > I couldn't agree with you more, Terry. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 I don't blame you one bit! I have to laugh because I have heard so many parents of children with just DS always use the sensory excuse (for unwanted behaviors) or they are bored (for repetitious behaviors)... hmmm maybe sometimes, but MAYBE they have autism too!!!! Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 I think he believes that Aden has the dual dx, he was just expecting that there wouldn't be a kid with it there. So to him it was a throw away PC comment until he was confronted with a child who actually has the dual dx. Sent from my iPod Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 Yep. After doing my research last night (after a good vent of course) I think your totally right. When I checked out his website I was expecting to see one of the big chambers that you sit in, nope his a tube that lays on the floor with an oxygen concentrator sitting next to it and an air tube connecting them. I did however find that our local hospital had a real hyperbaric therapy department, so I'm considering asking our pediatrician about sending us there. We would have to pay, but it might be worth it. Sent from my iPodHi ,The guy did you a favor. A chiropractor, in my opinion, is not qualified to offer these therapies. The educational requirements of a chiropractor does not include medical school. I wouldn't trust him with my child. He is just looking to make an easy buck plugging this therapy to the DS population. It would be interesting to know who is funding his study. I doubt the medical community would approve. CharlyneSubject: VentingTo: Date: Wednesday, January 4, 2012, 12:27 AM Aaaarrrrgggghhhhh!!!!!!! We went to the local DS support group tonight and I got a dose of ASD/DS discrimination. They invited some local resources to talk about their programs and one of the was a local chiropractor who does hyperbaric therapy. He started out by talking about how good hyperbaric is for kids with ASD and how he is going to do a study on kids with DS including " a couple of kids with the dual diagnosis". So I've actually been thinking about trying hyperbaric therapy with Aden, and I approached him about it. He tells me "well let me see who else we get". It was all over his face that he didn't really think there was anybody there with a kid with the dual dx. As though my kid isn't good enough. Now it normally wouldn't bother me if he had said he was only looking for kids with just DS, but he actually said he was looking for kids with the dual dx! I've encountered parents with bad attitudes about ASD before at this support group and it usually doesn't bother me, but tonight really hacked me off for some reason. Maybe I'm nuts but I'm still ticked! Thanks for letting me vent. At least here I know there are people who get it. Oh I guess I should mention this guy has a kid with DS, and what he refers to as " sensory stuff". (part of what makes me so crazy I guess). Mom to Aden 8 DS ASD ADHD and Aren 5 ADHD Sent from my iPod Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 Hi - You know, I understand your frustration. Sometimes it's tough for people to be faced wieth the thing they thought woudl not happen (someone in attendance who has a child with ). I would, however, encourage you to think twice before heading down the path of condemnation for the group. We all are doing the best we can as parents. Dr. Capone often does NOT give a dx of autism to chidlren with Down syndrome because they do not score as having autism. BUT they have sensory integrative issues, or (my favorite of his dx terms) stereotypy movement disorder (fancy words for dangling things). These are *all* valid. And EACH of these kids technically has a " dual dx. " That's not a term we get to hold dear only to kids who experience both autism and down syndrome. It just means they have two labels. Could be DS+OCD, DS+depression, DS+celiac disease.....a parent is welcome to use " dual dx " if their kid has two big labels! As for the " lots of kids lose their speech " comment, if they are truly saying that they need someone to set them straight. There's a reason for that and it's not gonig to be a good one. I don't know what it is, I know that it's NOT normal or typical. Even with in the realm of DS + autism, regression of speech is not common. Regressive onset of autism is not the typical form seen. So I'd probe a little on that one with some innocent, but targeted questions. Maybe they can get someone to speak to them who has experience in this area?  Where are you by the way? I know - trust me - how difficult it is to feel isolated, left out, and how hurtful it is when people judge your child when you're all doing the best you can with what you know and have available. I get it. You want the parent group to do more - to be more - to have more. With this particular man, I think it's worth a KIND email explaining your hurt. if he's going to solicit people for a " study, " of sorts, he needs to set his selection criteria better. There's more to be ticked off with about THAT than there is the label issues. Ask him where the study will be done, who is designing it, how will privacy be protected, blah blah blah. (I think I remember the issue being that he wasn'ts to do a study or project of sorts?). He needs to be more clear about his selection criteria because....how will he confirm that dual diagnosis? That's a medical thing. And to do something that way, he needs to fit some stern criteria for his work. it's there to protect the vulnerability of privacy for people with disabiltiies. So he needs to step up. Let me circle back to the parent group. If what you want from them is a place to put your anger, go for it. If you want support, then it sounds like they're gong to need some tolerant, patient, education and communication. If your not up to that - which I completely understand! - then maybe it's not the best place to spend your time. I choose to surround myself with positive experiences for all of us. It takes work sometimes and I get frustrated in the process sometimes. But if it's not going to feed ou in a positive manner, you don't need the poison. You already get that - and can't get away from it - through special ed. FWIW,JoanAndy's Mom. He's 22, has autism, DS, celiac disease, and a uses few words. Joan Guthrie Medlen, M.Ed, RD, LDwww.DownSyndromeNutrition.com Just released! Cooking by Color:Recipes for Independence. Order your copy today!Celebrate World Down Syndrome Day by attending our Practical Tools Webinar: Tips for Creating Healthy Lives for People with Down Syndrome, March 19, 2011, 10am Pacific Time. My profiles: Tungle.me WordPress LinkedIn Twitter Get a signature like this. CLICK HERE.   Thank you! Exactly! In this particular group the answer is always the same. " a lot of kids with DS have sensory problems, or a lot of kids with DS loose speech, or a lot of kids with DS stim, or a lot of kids with DS don't make proper eye contact " Hmmm maybe that's because a lot of kids with DS have autism. Sent from my iPod Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 Thanks for your insight. After having a day to think about things and after reading your post I must admit that I was painting the whole support group with a brush that belongs to a vocal few. For the most part the support group is a good group of people. While some of them are not worth the extra time or energy to educate a lot of them are. I think maybe the problem is that I've gotten spoiled here. Our kids are all a little different from each other but the group as a whole is compassionate and for each thing someone has sorta been there done that. Our local support group has a somewhat more limited scope of reference.Thanks for the perspective. Ps I'm in northern Nevada. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 Ah. But then I read ykur last post about the " doctor. " I have little patience for opportunists. He just wanted a miracle child..... Pfff. As for the vocal few, ignore ' em. Â Thanks for your insight. After having a day to think about things and after reading your post I must admit that I was painting the whole support group with a brush that belongs to a vocal few. For the most part the support group is a good group of people. While some of them are not worth the extra time or energy to educate a lot of them are. I think maybe the problem is that I've gotten spoiled here. Our kids are all a little different from each other but the group as a whole is compassionate and for each thing someone has sorta been there done that. Our local support group has a somewhat more limited scope of reference. Thanks for the perspective. Ps I'm in northern Nevada. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2012 Report Share Posted January 5, 2012 Sadly enough, I have learned over the years that there are always a few people that don't want to be educated. Sigh... Heidi Quote Link to comment Share on other sites More sharing options...
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