Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 I am continuously being shift from one group to the next hoping someone out there has a DS adult who experiences some of the same OCD behaviors as my daughter. Here is my next stop. People tell me to check in with the DS/autism group - it is not autism spectrum, her symptoms are too OCD according to her psychiatrist (who is very knowledgeable and treats many patients with mental disabilities). Many of you have young children with DS, but I am a parent with a young adult who suffers with severe chronic OCD with tactile issues. She destroys her clothing on a daily basis (loose threads are an issue). My goal is to find support in seeking proper treatment and/or just support from other parents whose child also has this affliction. Yes, OCD is a trait of DS, but usually once adolescents strikes the behaviors become more severe and the stresses in their lives increase - just like any normal being. Routines are drastically changed upon exiting the school run program therefore.... Here's where I blame the lack of government funding programs in order to assist the adults in their everyday living. Through my search on many forums I have struggled to find support within this age group because of her age. Lest we forget that the adults are the ones who have pioneered the way for the younger generation to have all the resources and advantages available to them today. Physicians are more knowledgeable today, but many release their patients after the age of 18, therefore.... DS clinics for adults are few and far between. Even my local DSG chapter caters to the young, neglecting the young adult who so desperately needs these services. The NDSC welcomes success stories but forgets about those parents whose child/adult has a dual-diagnosis. So my real question is are there any other parents out there whose young adult has severe OCD so and if so what methods have been successful? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Goodness! I had no idea that my 's development of a strict routine for herself was OCD. One can set one's watch by when she brushes her teeth, takes her bath and takes her meds. These are mild things, of course, but I can see how exagerated forms of this sort of behavior can be a problem. I hope you find the help you need. At least I can get to alter her routine when needed ... such as when we are away from home at bath time. granny On Sun, Jul 6, 2008 at 8:19 AM, kittellk <kathykittell@...> wrote: > I am continuously being shift from one group to the next hoping > someone out there has a DS adult who experiences some of the same OCD > behaviors as my daughter. Here is my next stop. People tell me to > check in with the DS/autism group - it is not autism spectrum, her > symptoms are too OCD according to her psychiatrist (who is very > knowledgeable and treats many patients with mental disabilities). > > Many of you have young children with DS, but I am a parent with a > young adult who suffers with severe chronic OCD with tactile issues. > She destroys her clothing on a daily basis (loose threads are an > issue). My goal is to find support in seeking proper treatment > and/or just support from other parents whose child also has this > affliction. Yes, OCD is a trait of DS, but usually once adolescents > strikes the behaviors become more severe and the stresses in their > lives increase - just like any normal being. Routines are drastically > changed upon exiting the school run program therefore.... Here's > where I blame the lack of government funding programs in order to > assist the adults in their everyday living. > > Through my search on many forums I have struggled to find support > within this age group because of her age. Lest we forget that the > adults are the ones who have pioneered the way for the younger > generation to have all the resources and advantages available to them > today. Physicians are more knowledgeable today, but many release > their patients after the age of 18, therefore.... DS clinics for > adults are few and far between. > > Even my local DSG chapter caters to the young, neglecting the young > adult who so desperately needs these services. The NDSC welcomes > success stories but forgets about those parents whose child/adult has > a dual-diagnosis. > > So my real question is are there any other parents out there whose > young adult has severe OCD so and if so what methods have been > successful? > > -- Not for ourselves but for the whole world we were born Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Hi Kathy - I'm , mom to (who also has OCD, ADHD and a slew of other label, including DS) who is almost 15. has been seen since birth by Dr. Capone - the autism/DS guru (and who does much research on this topic). Dr. Capone does not believe has ASD. He has told me that needs the same services that those with autism receive. When I asked him why a local psychologist would diagnosis with PDD, he said the symptoms are similiar and overlap (i.e. the rituals), that it was a shame that those who have OCD and DS do not get the same treatment as those with DS/ASD, etc..... Anyway, I asked what I could do, if anything, to medically get the services he needs. He told me to use the PDD label the local psychologist gave. was also previously seen by a psychiatrist - upon hearing/reading 's behaviors, he thought maybe he had PDD. But once he saw him, he changed his mind and stuck to the OCD/ADHD. was re-evaluated by the another psychologist (same practice) and the PDD label remains. I questioned her about that, advised what Dr. Capone stated and she told me the PDD diagnosis would remain. I got the DSM-IV out and read it, asked the psychologist to give me examples of what she saw in to give him the diagnosis, and agreed. The diagnostic requirements did change with the last DSM-IV revision- you may want to read it and ask your psychiatrist to look at it again. http://www.dsmivtr.org/2-3changes.cfm It's hard because I want to trust Dr. Capone's opinion, yet I cannot deny my child the services he needs and remain open to other professional opinions. I had his eligibility at school changed to ASD. I used the psychological (and deleted the IQ scores..lol..that is NONE OF THEIR BUSINESS--they just needed to see the PDD diagnosis). can learn, he's regressed since we moved to this school system in WV. Their mindset is stuck in the 70's- his teacher was just a glorified babysitter who enjoyed the trips to pizza hut where they folded boxes and the whole class then got free pizza, taught by worksheets and didn't even have a real classroom, looked more like a daycare room for older kids). His behaviors really do interfer with his learning. He is capable of so much more - given the right supports, including trained professionals, he will make progress. After changing to the PDD label for school, everyone else in my family said " It's about time'. It's much easier to say he has ASD than go on about OCD/ADHD, etc. To be honest, we have said it to others before, just to avoid the explaining (like at Disney). I'm waiting to get my hands on the latest copy of the psychological to show his neurologist for another opionion (who also specializes in ASD and treating those with developmental disabilities and behavior disorders). I worry about post-high school. Right now, I have a young girl who comes Monday-Friday from 8-1. They have a routine- that is important. My 20 year old daughter is a bit miffed- she is home most of the time, but I wanted this routine for him. His OCD is mostly centered around a Green Eggs and Ham book. That book goes everywhere with us and god forbid we want to do something before he's finished going through the pages. Anyway, I am on the DS/Autism list but I havent' been to the site in ages. There were other kids who had the PDD/ASD diagnosis who had major OCD issues. I say get the help where you can - there are also parents on there (me included) who joined because of the behavioral issues whose child did not have the autism diagnosis. -- cindysue@... Adults/OCD >I am continuously being shift from one group to the next hoping > someone out there has a DS adult who experiences some of the same OCD > behaviors as my daughter. Here is my next stop. People tell me to > check in with the DS/autism group - it is not autism spectrum, her > symptoms are too OCD according to her psychiatrist (who is very > knowledgeable and treats many patients with mental disabilities). > > Many of you have young children with DS, but I am a parent with a > young adult who suffers with severe chronic OCD with tactile issues. > She destroys her clothing on a daily basis (loose threads are an > issue). My goal is to find support in seeking proper treatment > and/or just support from other parents whose child also has this > affliction. Yes, OCD is a trait of DS, but usually once adolescents > strikes the behaviors become more severe and the stresses in their > lives increase - just like any normal being. Routines are drastically > changed upon exiting the school run program therefore.... Here's > where I blame the lack of government funding programs in order to > assist the adults in their everyday living. > > Through my search on many forums I have struggled to find support > within this age group because of her age. Lest we forget that the > adults are the ones who have pioneered the way for the younger > generation to have all the resources and advantages available to them > today. Physicians are more knowledgeable today, but many release > their patients after the age of 18, therefore.... DS clinics for > adults are few and far between. > > Even my local DSG chapter caters to the young, neglecting the young > adult who so desperately needs these services. The NDSC welcomes > success stories but forgets about those parents whose child/adult has > a dual-diagnosis. > > So my real question is are there any other parents out there whose > young adult has severe OCD so and if so what methods have been > successful? > > > > ------------------------------------ > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 I'm afraid that I'm not a whole lot of help. Each of our children/adults are individuals and the differences in personality are huge. We've never had our daughter's behaviors classified as OCD, although you might find some of the trait in her actions. Our emphasis has been on trying to help her to be as sociall acceptable as possible which involves personal care, dress, and things like self talk. Food is an intense focus for her .. and something she does not handle well. On the other hand, she is willing to spend time with us and get lots of exercise which at least is keeping her fit, but not at a healthy weight. The problems come when she goes shopping by herself which couple with both her cooking for herself .. and also great excess of sweet, fats, and soda at the lunch scene. I do feel that the " normalization " thrust (adult inclusion) is being pushed to where she and her peers don't have the support they need to develop healthy habits. The excuse for a very unhealthy lunch wagon is that normal people have access to these junk foods and it wouldn't be fair to deprive our developmentally disabled citizens from enjoying the same. On a lot of things, we have had to choose where we thought the most important issues were and to tackle them with as much patience as we can muster. I'm working and weight and healthy eating. My wife thinks it is hopeless, but my response is to ask me in five years about whether we are making any progress. Anyone in our household needs to deal with the unstructured. We have always had frequent changes and/or delays. When we push too hard, it is easy to tell because we get pushback and almost a sit down strike. On the other hand, when we work together change goes rather smoothly. You are right that the parents of adults are (still) just feeling their own way. The changes that came when our children were small has changed the world and expectations for those with down syndrome and many of us have been just feeling our way through with no path blazed for us. Hopefully we are leaving behind some sort of path to help guide those following. Rick ... dad to 35 year old Jan Quote Link to comment Share on other sites More sharing options...
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