Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 Plan on seeing me there Sara! I live 40 min form DC! So I will be there! Michlle MOm to Bill (DS) and Alec age 4 and HUnter age2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 1999 Report Share Posted November 3, 1999 GREAT ! Where do you live?? I'll be staying with my aunt and uncle in Bathesda, MD (probably). Cheers, Sara --- Shellhutch@... wrote: > From: Shellhutch@... > > Plan on seeing me there Sara! I live 40 min form DC! > So I will be there! > Michlle MOm to Bill (DS) and Alec age 4 and > HUnter age2 > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2000 Report Share Posted March 23, 2000 Silly me! And here is the ndss web site: www.ndss.org Sorry! Sara --- Sara Greenberg <DSyndrome@...> wrote: > From: Sara Greenberg <DSyndrome@...> > > > Hello! > > I spoke with the NDSS today and they should get back > to me shortly. They seem interested in offering > something special, in addition to the conference, > for > parents of children with Multiples and DS. > > Here is some information on their conference. It > should be exceptional, as they have been planning it > for two years (the NDSS Conference is NOT annual > like > the NDSC). > > The conference will be held in Washington, DC on > July > 27-29, 2000 at the Loews L'Enfant Plaza Hotel (right > near the sonian!). The hotel web site is > http://www.loewshotels.com/lenfanthome.html! A > single > room is $119 and a double is $129. > > The conference fees are as follows: > > *One adult family member - $225 > *Two adults from the same family - $400 > *Person with DS (ages 14 and up) - $100 > *Siblings (ages 14 and up) - $100 > *Professional - $250 > *Affiliate discount (one per group) - $125 > > The NDSS will offer scholarships, so stay tuned! > Also, > if your local DS support group is an affliliate of > the > NDSS you MAY be able to get the affiliate discount. > > This is what the conference includes: 2.5 days of > workshops and plenary sessions by top experts, 3 > networking breakfasts and 2 lunches, gala reception > at > the US Captol, admission to the exhibits and > Festival > of the Arts, invitation to the awards dinner, > compendium, dance parties (with Burke), and > MORE! Also, I believe that baby-sitting maybe > available. > > Hope to see ya all there! > Sara > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Mardi, I think we parents of children with dual diagnosis should have our own conference, don't you? I actually find myself unable to identify with the Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I really feel at home with the Autism Society of America. Would be great to have a newsletter coming on a regular basis on DS/ASD ..it was great to get the info you put out in Disability Solutions, Joan. Look at all the info that pops up on this list!!! Lauri in Michigan with Gene 11 with DS and autism, Drew 9 and Melinda 4. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Joan, If we had our own conference, I would personally be very interested in how to identify the source of problem behaviors. Right now I am wondering about how to do functional assessments, who does them and what sort of results do you get. Perhaps this was in a prior Disabilities Solution. Second, I am very interested in how to successfully include a child with DS/ASD in a regular classroom environment. I have been trying for four years to get it right. This year it is getting very tough due to increasing " problem behaviors " . Not only behavior, but what should the inclusive day look like?? Third, we are not into medication with my son...yet...and maybe won't get there. But I read all the info on the list and print alot of it in case we ever see a psychiatrist. I would want up to date information to share with him. A section on current medication would be great. Fourth, a section on sensory issues and intervention. Fifth, communication boards, devices, PECS, etc. Six, Circle of Friends. I could go on and on but those would all be very helpful to my family. Lauri ( Gene 11, Drew 9, and Melinda 4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 At 10:07 AM 3/27/00 +0000, you wrote: >From: " Mardi Deluhery " <mdeluhery@...> > I wonder >if enough of us ask if they would have a strand of workshops on behavior >issues. D.C. is close enough to get someone the Baltimore docs. The >brochure that I got doesn't have any detail about workshops. Does anyone >know any more? Joan? Well...................... Here's the link with the agenda: http://www.ndss.org/eventsconferences/nationalconference/program/program.html They have this specific workshop planned: Autism and Down Syndrome - Capone, M.D., Director, Down Syndrome Clinic, Kennedy Krieger Institute & Bonnie , M.D., Cincinnati Center for Developmental Disorders, University of Cincinnati They also are planning a " networking " or " discussion " time after conference hours for famlies of kids with ds and autism. I've been asked to facilitate (that means I just make sure the room is open). I asked both Drs and Capone to attend and they have agreed. Dr. Capone suggested we try to find someone knowledgeable in " behavior " to attend also. I may ask Dr. Dennis McGuire. Although he's not an autism specialist, he's a practical sort of guy. But....I may not. I don't want too many " professionals " there. My hope is that people can share about their families and network with each other. And if there are some medical related questions specific to this, we have a couple of docs there. In Wisconsin, there was a brief (very brief) discussion at the DSMIG Q/A session one day. Dr. Capone fielded it and then dropped me into the fire from my quiet place on the sideline by saying I was working on some sort of parent-networking (we had just gone to baltimore two months prior). That was the pressure cooker to get the listserv up. There was a lot of discussion in Pittsburgh on the topic. NDSC hadn't really thought of it until I raised the question with the conference organizer. Although I suspect Dr. Capone will be there also, I can't tell you if they'll take my hint that it would be nice if they did that. They did have a smaller workshop on the topic in Pittsburgh. I believe Sara Cohen was there....unfortunately I was booked somewhere else for a " feeding " wokrshop. So....there's all the dirt. Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 At 11:21 AM 3/27/00 EST, you wrote: >From: timothytlstein@... >I think we parents of children with dual diagnosis should have our own >conference, don't you? It would be nice and fun. We can dream and see where our dreams take us. As I recall our Aussie friends are bringing Mel for Sherry? I actually find myself unable to identify with the >Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I >really feel at home with the Autism Society of America. Having been to all three fo these conferences, I can say that I understand what youa re saying. However, I also have come to believe that no conference meets everyone's needs entirely. I've gotten to the point where I realize that if there are 3 workshops that I honestly walk away with something tangible to work with, that it is a good conference overall. It's too difficult to cover the vast range of abilities either in ds, autism, or the two combined! I think I felt hte most at home at the autism society meeting. The reason was that the information was more easily adapted to Andys' needs. Most used visual strategies, they understood the need for some sort of routine to the teaching, and when I told people my son had ds and autism, they didn't react like I was a leper. They just said, Oh. Well, tell me more about him. I think the D/S issue on ds/asd has helped raise awareness that there are families who feel left out and neglected in the ds community. It's not just those of us whose children have autism, but frankly, it's kids who are not speaking, kids who need significant curricular adaptation, kids who have other medical issues (some physical, some neurological)---kids who are not the " stereotype " that is proliferated by these organizations. You should hear me at meetings raising questions that are relevant to kids who are " lower functioning " or " atypical. " I'm forever speaking up for the child whose speech is late to come or never comes, for the child who isn't potty trained at 10, for the child who has not had a supportive classroom environment and thus has " behaviors. " Quite frankly I stymie them a lot of the time. But if they truly want to do what they say they want to do, they will listen and make efforts to dela with the situation. I have a better sounding board for this at NDSS than NDSC. That's not to say that NDSC won't listen, but it is to say that they won't listen to *me* right now. Sheila Hebein of NADS has probably the best understanding of where we stand. She was quite vocal at the DSMIG meeting over our ds/asd issue I guess. She is a great supporter, but her group is local and that's OK. She, too, challenged everyone in the room not to forget that there is a wide range of abilities and that " we " have neglected a great portion of the ds community over the years. I wasn't there to hear it in person, but I heard all about it when I arrived that night! Now that I've rambled on and on....(can you tell this is an area I'm passionate about?), I have a question of all of you. If you COULD have your own conference, what would you want to know? What topics would be of interest to you? The only way to justify the expenditure to someone like NDSS is to understand the need very clearly. So.... help me here. I will promise not to forget what is said and wait for my moments to pounce. Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Joan, This looks great. Now, I have to talk my dh into " letting " me go. I hope to see some of you there. (If I make it) S ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 On Mon, 27 Mar 2000 09:54:58 -0800 " Scherbert " <Scherb@...> writes: > From: " Scherbert " <Scherb@...> > > > > >>Now that I've rambled on and on....(can you tell this is an area > I'm > >>passionate about?), I have a question of all of you. If you COULD > have your > >>own conference, what would you want to know? What topics would be > of > >>interest to you? The only way to justify the expenditure to > someone like > >>NDSS is to understand the need very clearly. So.... help me here. > I will > >>promise not to forget what is said and wait for my moments to > pounce. > >> > Joan, > > 1. Medications-what being used, why, outcomes > 2. ABA-and how to use it(practical stuff) > 3. Sensory Intergration-how and why it helps > 4. Finding and keeping a doctor who is knowledgable > 5. Educating-IEP > 6. School-homebased?-site based?-in home taught by local school > system? > > that is a start! > > > Joan, DITTO Plus, accessing special programs (i.e. Beckett waiver, SSI, etc...) S ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 > >>Now that I've rambled on and on....(can you tell this is an area I'm >>passionate about?), I have a question of all of you. If you COULD have your >>own conference, what would you want to know? What topics would be of >>interest to you? The only way to justify the expenditure to someone like >>NDSS is to understand the need very clearly. So.... help me here. I will >>promise not to forget what is said and wait for my moments to pounce. >> Joan, 1. Medications-what being used, why, outcomes 2. ABA-and how to use it(practical stuff) 3. Sensory Intergration-how and why it helps 4. Finding and keeping a doctor who is knowledgable 5. Educating-IEP 6. School-homebased?-site based?-in home taught by local school system? that is a start! & Garry, parents of (9), (8), JJ (6), (5), and Esther (3). All adopted & with Down Syndrome. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 At 09:53 AM 3/27/00 -0800, you wrote: >From: J Stolz <stolzfamily@...> >Plus, accessing special programs (i.e. Beckett waiver, SSI, etc...) Ooo. I have this on my wish list for D/S. Trouble is, each state is different and not all states have a waiver (we don't, so there's no way for me to access SSI at all without cutting my income dramatically). Keep the ideas coming! I'm making a list. And , if your DH " lets " you go (how I understand!), be sure and let me know. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Among my list is: 1. When to introduce a system for communication other than sign langauge? How do you know when Sign language isn't a viable option, nor is speech, without drastically delaying the child's communicative progress? 2. How to promote learning at home without turning home into a school. I have others, but that's it for now. I'm supposed to either be working or going for a run! j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 BEHAVIOR STRATEGIES> Functional Analysis> Meanings of Behaviors Substituting Relevant Social Behaviors for " Unacceptable " . Can you see that behavior is the issue. Sara >>> jmedlen@... - 03/27/0 11:40 AM >>> From: " Joan E. Guthrie Medlen " <jmedlen@...> At 11:21 AM 3/27/00 EST, you wrote: >From: timothytlstein@... >I think we parents of children with dual diagnosis should have our own >conference, don't you? It would be nice and fun. We can dream and see where our dreams take us. As I recall our Aussie friends are bringing Mel for Sherry? I actually find myself unable to identify with the >Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I >really feel at home with the Autism Society of America. Having been to all three fo these conferences, I can say that I understand what youa re saying. However, I also have come to believe that no conference meets everyone's needs entirely. I've gotten to the point where I realize that if there are 3 workshops that I honestly walk away with something tangible to work with, that it is a good conference overall. It's too difficult to cover the vast range of abilities either in ds, autism, or the two combined! I think I felt hte most at home at the autism society meeting. The reason was that the information was more easily adapted to Andys' needs. Most used visual strategies, they understood the need for some sort of routine to the teaching, and when I told people my son had ds and autism, they didn't react like I was a leper. They just said, Oh. Well, tell me more about him. I think the D/S issue on ds/asd has helped raise awareness that there are families who feel left out and neglected in the ds community. It's not just those of us whose children have autism, but frankly, it's kids who are not speaking, kids who need significant curricular adaptation, kids who have other medical issues (some physical, some neurological)---kids who are not the " stereotype " that is proliferated by these organizations. You should hear me at meetings raising questions that are relevant to kids who are " lower functioning " or " atypical. " I'm forever speaking up for the child whose speech is late to come or never comes, for the child who isn't potty trained at 10, for the child who has not had a supportive classroom environment and thus has " behaviors. " Quite frankly I stymie them a lot of the time. But if they truly want to do what they say they want to do, they will listen and make efforts to dela with the situation. I have a better sounding board for this at NDSS than NDSC. That's not to say that NDSC won't listen, but it is to say that they won't listen to *me* right now. Sheila Hebein of NADS has probably the best understanding of where we stand. She was quite vocal at the DSMIG meeting over our ds/asd issue I guess. She is a great supporter, but her group is local and that's OK. She, too, challenged everyone in the room not to forget that there is a wide range of abilities and that " we " have neglected a great portion of the ds community over the years. I wasn't there to hear it in person, but I heard all about it when I arrived that night! Now that I've rambled on and on....(can you tell this is an area I'm passionate about?), I have a question of all of you. If you COULD have your own conference, what would you want to know? What topics would be of interest to you? The only way to justify the expenditure to someone like NDSS is to understand the need very clearly. So.... help me here. I will promise not to forget what is said and wait for my moments to pounce. Joan ------------------------------------------------------------------------ DON'T HATE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/2120/6/_/691668/_/954175257/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 In a message dated 3/27/00 3:14:45 PM Eastern Standard Time, timothytlstein@... writes: << I would want up to date information to share with him. A section on current medication would be great. Fourth, a section on sensory issues and intervention. Fifth, communication boards, devices, PECS, etc. Six, Circle of Friends. I could go on and on but those would all be very helpful to my family. >> Ditto. AND I would like to see ALL the various type approaches to dealing with autism. For example, Floortime (you knew I was gonna say this Joan, didn't you?!?). I am a HUGE believer in it for Maddie and it amazes me how few people really understand it. It seems everywhere I go everybody knows about ABA, discrete, TEACCH...............but no one seems to know Floortime. As ALL here know, we can't make decisions about what works for our kids unless we know ALL that's out there. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 Joan, where or where do you get all the time and the abilitity to go to all these conferences. I am so " jealous " . I have always found information so wonderful but you are also so involved that is so great but the time involved.......... I have gone to many Down Syndrome conventions, well ok not many but at least a few and I have always hated how the " stars " always appear. The ones who are high functioning. I really do not think they give the true, the medium of that bell shaped curve with regard to Down Syndrome you know the average. I do not know why except that we do it in society in general with our movie stars and glamour models but they are not the average " Joe " . I just would think the these organization would really want to show ALL aspects of the syndrome and what goes on not just the best of the best. You are doing a wonderful job of bring this issue forward of DS/Autism and that is so great. Man I wish I had the ability to go to this conference for many reasons the most to just meet some of the people you talk about. Keep up the great work. R. " Joan E. Guthrie Medlen " wrote: > From: " Joan E. Guthrie Medlen " <jmedlen@...> > > At 10:07 AM 3/27/00 +0000, you wrote: > >From: " Mardi Deluhery " <mdeluhery@...> > > > I wonder > >if enough of us ask if they would have a strand of workshops on > behavior > >issues. D.C. is close enough to get someone the Baltimore docs. The > >brochure that I got doesn't have any detail about workshops. Does > anyone > >know any more? Joan? > > Well...................... > > Here's the link with the agenda: > > ttp://www.ndss.org/eventsconferences/nationalconference/program/program.html > > They have this specific workshop planned: > Autism and Down Syndrome - Capone, M.D., Director, Down > Syndrome > Clinic, Kennedy Krieger Institute & Bonnie , M.D., Cincinnati > > Center for Developmental Disorders, University of Cincinnati > > They also are planning a " networking " or " discussion " time after > conference > hours for famlies of kids with ds and autism. I've been asked to > facilitate > (that means I just make sure the room is open). I asked both Drs > > and Capone to attend and they have agreed. Dr. Capone suggested we try > to > find someone knowledgeable in " behavior " to attend also. I may ask Dr. > > Dennis McGuire. Although he's not an autism specialist, he's a > practical > sort of guy. But....I may not. I don't want too many " professionals " > there. > My hope is that people can share about their families and network with > each > other. And if there are some medical related questions specific to > this, > we have a couple of docs there. > > In Wisconsin, there was a brief (very brief) discussion at the DSMIG > Q/A > session one day. Dr. Capone fielded it and then dropped me into the > fire > from my quiet place on the sideline by saying I was working on some > sort of > parent-networking (we had just gone to baltimore two months prior). > That > was the pressure cooker to get the listserv up. > > There was a lot of discussion in Pittsburgh on the topic. NDSC hadn't > really thought of it until I raised the question with the conference > organizer. Although I suspect Dr. Capone will be there also, I can't > tell > you if they'll take my hint that it would be nice if they did that. > They > did have a smaller workshop on the topic in Pittsburgh. I believe Sara > > Cohen was there....unfortunately I was booked somewhere else for a > " feeding " wokrshop. > > So....there's all the dirt. > > Joan > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 YES......YES.....YES....YOU GO GIRL!!!!! This is not the first time I have heard what you are saying. Sometimes I felt it was duty as a parent to get my kid to where all the " DownSyndrome Stars " are and if we do not there must be something wrong and therefore we do not real fit as we are to hard to deal with. Besides reality is always hard to deal with. I really do not want to get on the soap box you did a great job yourself besides I might not get down. What would I like to see at a conference. That takes some thought. One is well inclussion. Since Zach is now 15 I have lots of questions esp. because of where he functions. I was such an inclusion fanatic at one time but I have come a full 180 degress and it is too long to go into but inclussion, especially in the older classes and the difference really start to become apparent in and about fourth grade. It is not inclusion for inclusions sack but where will the child be best served where he will benefit the most to get the most from his education so the he successfully go distance he can go and actually learn things that are important for him to use and function in society and the community. I do not hang with doctors and lawyers but with people I have things in common with and relate to. Is that not where it is at. The pendulm swings from segregation and self containment to full inclussion to where it should be someplace in the middle and thats ok. It does not mean you as a parent are not doing your job or the school does not want to deal with inclussion it just means that we are looking at what the child really needs to be successful in life. There is more but boy the subject would definatly be great to brain storm with a whole group of people live and in person. Oh the things we would come up with. R. From: " Joan E. Guthrie Medlen " <jmedlen@...> At 11:21 AM 3/27/00 EST, you wrote: >From: timothytlstein@... >I think we parents of children with dual diagnosis should have our own >conference, don't you? It would be nice and fun. We can dream and see where our dreams take us. As I recall our Aussie friends are bringing Mel for Sherry? I actually find myself unable to identify with the >Down Syndrome Congress ( maybe NDSS would be better ) and I'm not sure I >really feel at home with the Autism Society of America. Having been to all three fo these conferences, I can say that I understand what youa re saying. However, I also have come to believe that no conference meets everyone's needs entirely. I've gotten to the point where I realize that if there are 3 workshops that I honestly walk away with something tangible to work with, that it is a good conference overall. It's too difficult to cover the vast range of abilities either in ds, autism, or the two combined! I think I felt hte most at home at the autism society meeting. The reason was that the information was more easily adapted to Andys' needs. Most used visual strategies, they understood the need for some sort of routine to the teaching, and when I told people my son had ds and autism, they didn't react like I was a leper. They just said, Oh. Well, tell me more about him. I think the D/S issue on ds/asd has helped raise awareness that there are families who feel left out and neglected in the ds community. It's not just those of us whose children have autism, but frankly, it's kids who are not speaking, kids who need significant curricular adaptation, kids who have other medical issues (some physical, some neurological)---kids who are not the " stereotype " that is proliferated by these organizations. You should hear me at meetings raising questions that are relevant to kids who are " lower functioning " or " atypical. " I'm forever speaking up for the child whose speech is late to come or never comes, for the child who isn't potty trained at 10, for the child who has not had a supportive classroom environment and thus has " behaviors. " Quite frankly I stymie them a lot of the time. But if they truly want to do what they say they want to do, they will listen and make efforts to dela with the situation. I have a better sounding board for this at NDSS than NDSC. That's not to say that NDSC won't listen, but it is to say that they won't listen to *me* right now. Sheila Hebein of NADS has probably the best understanding of where we stand. She was quite vocal at the DSMIG meeting over our ds/asd issue I guess. She is a great supporter, but her group is local and that's OK. She, too, challenged everyone in the room not to forget that there is a wide range of abilities and that " we " have neglected a great portion of the ds community over the years. I wasn't there to hear it in person, but I heard all about it when I arrived that night! Now that I've rambled on and on....(can you tell this is an area I'm passionate about?), I have a question of all of you. If you COULD have your own conference, what would you want to know? What topics would be of interest to you? The only way to justify the expenditure to someone like NDSS is to understand the need very clearly. So.... help me here. I will promise not to forget what is said and wait for my moments to pounce. Joan ------------------------------------------------------------------------ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 WOW, you get exercise in too. I am really impressed and I am not being sarcastic at all really I am just getting more " jealous " . Matter of fact I notice my skin tone taking on the strange green tinge....... HMMMMMM R. " Joan E. Guthrie Medlen " wrote: > From: " Joan E. Guthrie Medlen " <jmedlen@...> > > Among my list is: > > 1. When to introduce a system for communication other than sign > langauge? > How do you know when Sign language isn't a viable option, nor is > speech, > without drastically delaying the child's communicative progress? > > 2. How to promote learning at home without turning home into a school. > > I have others, but that's it for now. I'm supposed to either be > working or > going for a run! > > j > ----------------------------------------------------------------------- > > ----------------------------------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 I am not surprised that a teacher who has a 25 year old son with DS would say that autism doesn't co-exist with DS. I have a 20 year old daughter and until very recently that is what everyone thought. It is certainly what I was told for years. A lot of characteristics that we would now see as ASD were written off as characteristics of " low functioning " persons with mental retardation (whether the person had DS or MR for another reason). Autism was a very narrow diagnosis that did not include the spectrum that we think of today. As recently as 1995, Dr. Van Dyke etc. say in " Medical and Surgical Care for Children With Down Syndrome " that " there is seldom a particular advantage to adding the diagnosis of autism to a person with Down Syndrome. There is some danger, however, because many people see autism as a " hopeless " condition without much chance for change or response to treatment. " (p.282). What has changed radically in very recent years are the medication options and the the therapeutic techniques such as PECS and discrete trial. All of this is to say that there is an enormous need for more information out there to parents and the professional community. Joan's Disability Solutions issue has been very, very useful but we need to do lots more. This discussion of a conference is pretty exciting although no small endeavor. Mardi ---------- >From: JANDMJKING@... >onelist >Subject: NDSS CONFERENCE >Date: Wed, Mar 29, 2000, 11:32 AM > >From: JANDMJKING@... > >Joan, > >What I would like to see is more literature about a dual diagnoses. I >called our local support group when I started suspecting Tori had autism and >they know nothing about it being anything that could coexisting with ds. I >call NDSS they sent me a list of all the medical things that could happen to >people with ds. Autism was not on the list; and 2 small articles about ds/ads > that were dated, not current articles. I would like to see them add asd to >the medical list of things that could happen to people with ds. I don't >know if I am the only one or not but I got and still get a lot of negative >comments every time I say Tori has both ds and asd. Last year when we were >going through trying to get her diagnosed her preschool teacher who is a >special Ed teacher and also has a son 25 who has ds gave me the most trouble >she told me no way does Tori have autism that the things I was seeing were >common to kids with ds. Drs. teacher, school officials, and on and on have >no clue. How can we get the word out that at least 10% of kids with ds also >have asd? Plus wouldn't it be helpful for people who are living through >having a child or an adult with ds/asd to be able to have more info. I know >how relived I was when Disabilities Solutions had info in the special >edition. I can at least wave it in front of someone's nose when they give me >grief. > >Janet mom to Tori 5 ds - pddnos - ocd > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >1/975/6/_/691668/_/954329553/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 In a message dated 3/27/00 10:22:18 AM Central Standard Time, timothytlstein@... writes: << I think we parents of children with dual diagnosis should have our own conference, don't you? >> Amen!! Who wants to organize? I'll help! Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 In a message dated 3/27/00 10:42:19 AM Central Standard Time, jmedlen@... writes: << f you COULD have your own conference, what would you want to know? What topics would be of interest to you? >> A session on ABA - discreet trial training - other behavior modification methods used with success in the DS-ASD population (Barbara Doyle?). A session on how families can cope - support networks, in-home respite, out-of-home respite, how to ask for help and how to get it, how to preserve your marriage and family health, etc. (Like what you're doing at NADS, Joan!!!) - this one could be facilitated by a panel of parents and perhaps a phychologist or two. A session on medications - what they are, how they work, side effects, etc. and how to gather data about problem behaviors BEFORE deciding on if meds and if so, what meds. A session on how to coordinate all the docs in your child's life - who should be the case manager - behavioral pediatrician, autism specialist, regular pediatrician, etc. - coordination between all the docs, especially when your child has lots of medical issues too, can be very difficult. A session on education - curricular adaptations, circle of friends, how to successfully include, etc. I could go one, but I'd better stop! Are you sorry you asked, Joan? Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 At 07:00 PM 4/1/00 EST, you wrote: >I could go one, but I'd better stop! Are you sorry you asked, Joan? > Just the opposite. I find this very helpful. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 joan, about the ndss, i will be there......... sent in stuff already...... about ryan and his touristy excursions, i would definitely recommend the old town trolley......... you pay like 16.oo dollars, but see the whole town, georgetown included......... the air and space is cool, along with the natural history musuem.......but all the smiths are cool and to walk along arlington cemetary at night and see changing of the guards is neato too......... but since your time is limited you could always take him on teh midnight cruise of dc...........that is my favorite and hes old enough to enjoy it.........hope to say hello there.....leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Leah: Thanks for all the tourist tips. We will get there a few days early and are staying a few days later so we can get it in. I do want him to see the changing of the guard. Arlington is on our list, most definitely...as are a few hundred other things. We get a private tour of the white house and a capitol tour as well. Is Ashton coming with you or....(dare I ask)....are you coming *alone*??? Hope to see you there. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 I'm going to have to get DH looking at this. I want to go. I think I have enough frequent flyer miles. Leah, are you staying in a hotel? Are you by yourself? Do you need a roomie? (Dont you like my " subtle " approach??) This is my goal, to get registered and plane reservations made for this conference. S ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Joan, i am planning on coming alone..........hehe my hub finally took leave from military last two weeks of july.........about time...... lolol anyways, i am thinking of having him come up for a visit for the afternoon........i only live about 40 miles outside dc, so its not to far......... and bring the kids........ashton loves the zoo, the national aquarium and freedom plaza which is by the hotel..... i used to work for a law firm by there and she spent many days in their children's center........... its a nice place to relax............but for the most part......i am on my own............zippee skippe..........take care, leah Quote Link to comment Share on other sites More sharing options...
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