Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 <<I think we all need to start promoting DS & ASD seeing there is no much in the news about ASD lately. Everyone seems so surprised that the ratio is changing, but I'm not. I just think it is because more kids are FINALLY being diagnosed. I am hitting the local papers asking them to do a write-up on it. I have also written Rose O'Donnell, Montel and OPRAH. Don't know how far it will go, but I think it is worth a try.>> I think this is a good idea. I'm afraid that when they start trying to fudge the numbers and present a picture of less autism they (whoever " they " is) are going to come down on our kids and try to remove the Autism label. I know alot of folks with ASD kids who still think we're skewing the numbers and getting " their " services. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 The public needs to understand that kids with DS are 10% likely to develop ASD. I think this should be our goal!!! Liz Re: DS & ASD <<I think we all need to start promoting DS & ASD seeing there is no much in the news about ASD lately. Everyone seems so surprised that the ratio is changing, but I'm not. I just think it is because more kids are FINALLY being diagnosed. I am hitting the local papers asking them to do a write-up on it. I have also written Rose O'Donnell, Montel and OPRAH. Don't know how far it will go, but I think it is worth a try.>> I think this is a good idea. I'm afraid that when they start trying to fudge the numbers and present a picture of less autism they (whoever " they " is) are going to come down on our kids and try to remove the Autism label. I know alot of folks with ASD kids who still think we're skewing the numbers and getting " their " services. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 <<The public needs to understand that kids with DS are 10% likely to develop ASD. I think this should be our goal!!!>> I agree....I still run into so many people (professionals included) who never heard of such a thing as dual dx. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 You are sooooo right! Re: DS & ASD <<The public needs to understand that kids with DS are 10% likely to develop ASD. I think this should be our goal!!!>> I agree....I still run into so many people (professionals included) who never heard of such a thing as dual dx. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Sherry, Amen to that! It took me 8 long years to get the dual dx made for . The doctors would look at me like I was crazy and dismiss the whole idea. When I would bring it up they would glance over at him, but never even spend an extra few minutes playing with him or talking to him to see what I was talking about. When I did ask if it were possible (this was before I knew it was), they would hesitate, then shake their head " no " . So, I always felt like they didn't even know for sure. Of course, now I know that they didn't know! How sad that they let it go and didn't care to find out. They short-changed him, me, and themselves. By the way, a new neurologist in town finally made the diagnosis on our first visit to see her. Right off the bat, she told me it WAS possible to have Down's and Autism. By that time though, I already knew it was because I had researched it on the internet. After receiving the diagnosis and taking it in writing to his school, they still wouldn't acknowledge it. A LOT of education is needed on this subject - that's for sure! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Liz, I am with you on this. Previously I wrote to Dr. Phil, and Oprah about and our group. We need to get the word out that Yes and child with DS can have autism and it is very hard to get diagnoised.Maybe if we pick a day and everybody writes the same talk show host they will listen. What do you think? Cyndi B > > I think we all need to start promoting DS & ASD seeing there is no much in the news about ASD lately. Everyone seems so surprised that the ratio is changing, but I'm not. I just think it is because more kids are FINALLY being diagnosed. I am hitting the local papers asking them to do a write-up on it. I have also written Rose O'Donnell, Montel and OPRAH. Don't know how far it will go, but I think it is worth a try. > > Liz (aka MOM) > > " Trust your hunches. They're usually based on facts filed away just below the conscious level. " > - Dr. Joyce Brothers > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 I could see something like this work. I visualize Joan as the parent who begun sharing about her son Andy, then came out with the Newsletter, and begun a yahoo group, etc., along with a few other parents sharing their experiences then have Dr. Malloy, Dr. Bonnie , & Dr. Capone who are fit to discuss this. Here locally most of the medical professionals and the educational arena and the agencies working with individual with Down syndrome are becoming aware as I have been around and even if its through others whom and I have met. Yesterday I had attended a Tappestry Conference, " Teachers, Administrators, Parents and Professionals We are Enterwined one another in one great Tappestry " . Just every corner I had turned out there or attended a session, most of the professionals who were speakers or other parents spoke a little of or about his mom, to me what an honor with a flush. Especially as he is older and it was mentioned how he will not be kicked out to the curb with the services they assist him with as when he was younger missing out not anyone understanding the importance of everyone must be aware of TEACHING, being a role model, our kids needs met, blah blah blah, not to bore y'all. I know finally the Down syndrome Organization here are aware of other parents coming aboard with their individual with Down syndrome not fitting in a typical person with DS. Especially when a parent with twins both born with DS and the other was not developing as his sib, what an eye opener. So this may be wise to have parents here too have twins to discuss the difference here. The autism support groups, autism committee, other yahoo groups, etc. definitely are aware of it. There is a medical development Ped. here and she teaches at one of the medical university and has been educating the medical students and her fellow compadres in the medical field of how autism could co- exist with Down syndrome or other disabilitie as she has gotten to my story and my son . The dual diagnosis is coming around only at a slow start. It is getting the word out totally agree. Irma,18,DS/ASD > > I think we all need to start promoting DS & ASD seeing there is no much in the news about ASD lately. Everyone seems so surprised that the ratio is changing, but I'm not. I just think it is because more kids are FINALLY being diagnosed. I am hitting the local papers asking them to do a write-up on it. I have also written Rose O'Donnell, Montel and OPRAH. Don't know how far it will go, but I think it is worth a try. > > Liz (aka MOM) > > " Trust your hunches. They're usually based on facts filed away just below the conscious level. " > - Dr. Joyce Brothers > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 But dx ds and ASD is getting easier. Think of us last generation people. It took constant searching and until Elie was 12 to get a dx. I was pretty sure by age 5, and definately secure by age 8, but the professionals took until he was 12!!!!!!! And getting services without a dx is much more difficult. Sara - Choose to make lemonade, not complain about the lemons. > >Reply-To: >To: < > >Subject: Re: DS & ASD >Date: Sat, 10 Feb 2007 16:22:06 -0500 > >You are sooooo right! > Re: DS & ASD > > > <<The public needs to understand that kids with DS are 10% likely to >develop ASD. I think this should be our goal!!!>> > > I agree....I still run into so many people (professionals included) who >never heard of such a thing as dual dx. > Sherry > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 I vote for mailing letters with photos of our DS/Aut kids to Rosie and Oprah both on March 1, 2007. Let's do it and see if we get a response. Anyone with me? P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 Sara, is 12 and it took him breaking his nose before anyone asked how can we help you.The child had a severe sinus infection and had been to the docs 3x that week.Even the hospital did absolutely nothing for him.The next week on Monday finally a different Doc in his group sent him for a sinus x-ray.Up until then they were blaming hormones for his behavior.Sorry Docs he had a severe sinus infection with a terrible headache and he could not tell me.This was just 3 yrs ago and I have know he was autistic since he was 3.The autism center that has only been around for 1yr 1/2 knew after spending just 5 minutes with him.Who dx Elie? Cyndi B > But dx ds and ASD is getting easier. Think of us last generation people. > It took constant searching and until Elie was 12 to get a dx. I was pretty > sure by age 5, and definately secure by age 8, but the professionals took > until he was 12!!!!!!! And getting services without a dx is much more > difficult. > > > > Sara - Choose to make lemonade, not complain about the lemons. > > > > > > > > >Reply-To: > >To: < > > >Subject: Re: DS & ASD > >Date: Sat, 10 Feb 2007 16:22:06 -0500 > > > >You are sooooo right! > > Re: DS & ASD > > > > > > <<The public needs to understand that kids with DS are 10% likely to > >develop ASD. I think this should be our goal!!!>> > > > > I agree....I still run into so many people (professionals included) who > >never heard of such a thing as dual dx. > > Sherry > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Good Idea , I'm in. Could you please post the two addresses.So they are to be mailed out on March 1, right? Brigid Re: DS & ASD I vote for mailing letters with photos of our DS/Aut kids to Rosie and Oprah both on March 1, 2007. Let's do it and see if we get a response. Anyone with me? P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 I with you! Post email address to be sure we all hit the same email address! Re: DS & ASD I vote for mailing letters with photos of our DS/Aut kids to Rosie and Oprah both on March 1, 2007. Let's do it and see if we get a response. Anyone with me? P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 I think that is a great start to this adventure! Re: DS & ASD I vote for mailing letters with photos of our DS/Aut kids to Rosie and Oprah both on March 1, 2007. Let's do it and see if we get a response. Anyone with me? P. Quote Link to comment Share on other sites More sharing options...
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