Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 Hi : I hope the assessment provides some answers. I will say that when my boys, now ages 14 and almost 13 are in an environment that is not working for them, then they will look like children on the autism spectrum. If their needs are being met, including sensory but also emotional, then they do not look like children with autism. It has been very confusing for many years. Dr. Capone from the Kennedy Krieger Insitute has done much research on children with the dual-diagnosis of DS and ASD and he has said that many kids with DS have a few attributes of autism but the number of having full autism he felt was low. He said this a few years ago. He has done a few more research projects since then (I think - given the info on this list serve) so he may think differently now. But my boys are very much in the autism occasionally category depending on their environment. For us, the only benefit of the diagnosis is that the school has had to be much more rigid in following their IEP. I guess they think that only kids with ASD need structure! Our school district also practices full inclusion and for the most part it has worked for us but it does totally depend on the teacher and the educational assistants. My boys are adopted so they bring a few other issues into the mix but they are quite fun and we have gotten pretty good at knowing what environments will work and not expecting them to do environments they can't do. And then as they have gotten older, they have matured and this has helped tons! We live in Madison, WI. Where do you live? Welcome to the group. Lori Mom to Isaac, 14 and Tony almost 13 - yesterday was Tony's Gotcha Day! Woohoo! > ** > > > Hi all, > My name is and I have 4 dd's aged 10, 8, 2, & 6mos. Our eldest has > Trisomy21 (no medical issues). When she was about 7, and about the time we > started public school, we started to see alot of sensory issues, stuttering, > new and challenging behaviors, and alot of self-isolating. I feel like quite > alot of the self-isolating comes from a less than inclusive classroom > environment but alot of the other stuff isn't so clear. Last fall I asked > our pediatrician for help and have been referred to a special clinic for > complex developmental and behavioral disabilities for assessment. Our dr > expects that an autism-ds diagnosis is likely although she did wonder about > Tourettes at one point as well. I just read a recent study that kids with DS > often are late to exhibit characteristics of autism. Has this been anyone's > experience? > > I am a bit militant in my definitions and expecttikns for full inclusion > and this year we have a FABULOUS team of EA's and a really great teacher. > Our principal is a tremendous ally as well. We are seeing alot of > improvements in self-esteem and behaviour. She is really identifying as a > student and real Reciprocal friendships are emerging. The kids have always > been willing but grown-ups tend to mess these things up. Still though, LOTS > of sensory issues and I am anxious to have this assessment (i usually refuse > all assessments) to see if they have any strategies to help her cope, > communicate, and get her needs met. October 31st! i hope its a good omen! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 Hi ! My name is and my son has Translocation DS and was just diagnosed this summer at 9 yrs old with ASD. & nbsp;He had very subtle issues when he was younger. & nbsp;There was a big issue in that he was non verbal and we knew it was not due to the DS but when he turned 9 and we saw withdrawal and behavior issues as well as not wanting to be touched or look at me when I was speaking to him, there was no denying it. & nbsp; Hope you can get some answers at your appointment. Sent from my Palm Pre on the Now Network from Sprint On Oct 19, 2011 8:15 PM, excludenone & lt;hcarley@... & gt; wrote: & nbsp; Hi all, My name is and I have 4 dd's aged 10, 8, 2, & amp; 6mos. Our eldest has Trisomy21 (no medical issues). When she was about 7, and about the time we started public school, we started to see alot of sensory issues, stuttering, new and challenging behaviors, and alot of self-isolating. I feel like quite alot of the self-isolating comes from a less than inclusive classroom environment but alot of the other stuff isn't so clear. Last fall I asked our pediatrician for help and have been referred to a special clinic for complex developmental and behavioral disabilities for assessment. Our dr expects that an autism-ds diagnosis is likely although she did wonder about Tourettes at one point as well. I just read a recent study that kids with DS often are late to exhibit characteristics of autism. Has this been anyone's experience? I am a bit militant in my definitions and expecttikns for full inclusion and this year we have a FABULOUS team of EA's and a really great teacher. Our principal is a tremendous ally as well. We are seeing alot of improvements in self-esteem and behaviour. She is really identifying as a student and real Reciprocal friendships are emerging. The kids have always been willing but grown-ups tend to mess these things up. Still though, LOTS of sensory issues and I am anxious to have this assessment (i usually refuse all assessments) to see if they have any strategies to help her cope, communicate, and get her needs met. October 31st! i hope its a good omen! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 Last time I heard Dr Capone speak live three years ago he said over 10% of kids with Ds have autism...that if this was percentage in typical population there would be more people advocating for research!! Desi McKenzie - Re: Diagnosis pending Hi : I hope the assessment provides some answers. I will say that when my boys, now ages 14 and almost 13 are in an environment that is not working for them, then they will look like children on the autism spectrum. If their needs are being met, including sensory but also emotional, then they do not look like children with autism. It has been very confusing for many years. Dr. Capone from the Kennedy Krieger Insitute has done much research on children with the dual-diagnosis of DS and ASD and he has said that many kids with DS have a few attributes of autism but the number of having full autism he felt was low. He said this a few years ago. He has done a few more research projects since then (I think - given the info on this list serve) so he may think differently now. But my boys are very much in the autism occasionally category depending on their environment. For us, the only benefit of the diagnosis is that the school has had to be much more rigid in following their IEP. I guess they think that only kids with ASD need structure! Our school district also practices full inclusion and for the most part it has worked for us but it does totally depend on the teacher and the educational assistants. My boys are adopted so they bring a few other issues into the mix but they are quite fun and we have gotten pretty good at knowing what environments will work and not expecting them to do environments they can't do. And then as they have gotten older, they have matured and this has helped tons! We live in Madison, WI. Where do you live? Welcome to the group. Lori Mom to Isaac, 14 and Tony almost 13 - yesterday was Tony's Gotcha Day! Woohoo! > ** > > > Hi all, > My name is and I have 4 dd's aged 10, 8, 2, & 6mos. Our eldest has > Trisomy21 (no medical issues). When she was about 7, and about the time we > started public school, we started to see alot of sensory issues, stuttering, > new and challenging behaviors, and alot of self-isolating. I feel like quite > alot of the self-isolating comes from a less than inclusive classroom > environment but alot of the other stuff isn't so clear. Last fall I asked > our pediatrician for help and have been referred to a special clinic for > complex developmental and behavioral disabilities for assessment. Our dr > expects that an autism-ds diagnosis is likely although she did wonder about > Tourettes at one point as well. I just read a recent study that kids with DS > often are late to exhibit characteristics of autism. Has this been anyone's > experience? > > I am a bit militant in my definitions and expecttikns for full inclusion > and this year we have a FABULOUS team of EA's and a really great teacher. > Our principal is a tremendous ally as well. We are seeing alot of > improvements in self-esteem and behaviour. She is really identifying as a > student and real Reciprocal friendships are emerging. The kids have always > been willing but grown-ups tend to mess these things up. Still though, LOTS > of sensory issues and I am anxious to have this assessment (i usually refuse > all assessments) to see if they have any strategies to help her cope, > communicate, and get her needs met. October 31st! i hope its a good omen! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 Welcome . Could you share what part of the world you are living in? Certainly a handful with 4 children so youg! Our son was not dx with ASD until about age 10 altho I was questioning his non-DS typical behavior for at least 5 years before that. While dx and assessments cure nothing, it does give a direction in which to head. Our very late dx prevented, for example, using some very useful behavior and sensory tools which might have helped lessen the symptom she was suffering with (and I use the word suffering with great deliberation. The pain from sensory overload, the looks of DIs-appropriation because of behavior he could not control, MADE THE NEED FOR A DX URGENT TO US. A.ND THEN THERE ARE THE SERVICES MORE LIKELY TO BE AVAILABLE WITH THE ADDITION OF A N asd DX. > ** > > > Hi all, > My name is and I have 4 dd's aged 10, 8, 2, & 6mos. Our eldest has > Trisomy21 (no medical issues). When she was about 7, and about the time we > started public school, we started to see alot of sensory issues, stuttering, > new and challenging behaviors, and alot of self-isolating. I feel like quite > alot of the self-isolating comes from a less than inclusive classroom > environment but alot of the other stuff isn't so clear. Last fall I asked > our pediatrician for help and have been referred to a special clinic for > complex developmental and behavioral disabilities for assessment. Our dr > expects that an autism-ds diagnosis is likely although she did wonder about > Tourettes at one point as well. I just read a recent study that kids with DS > often are late to exhibit characteristics of autism. Has this been anyone's > experience? > > I am a bit militant in my definitions and expecttikns for full inclusion > and this year we have a FABULOUS team of EA's and a really great teacher. > Our principal is a tremendous ally as well. We are seeing alot of > improvements in self-esteem and behaviour. She is really identifying as a > student and real Reciprocal friendships are emerging. The kids have always > been willing but grown-ups tend to mess these things up. Still though, LOTS > of sensory issues and I am anxious to have this assessment (i usually refuse > all assessments) to see if they have any strategies to help her cope, > communicate, and get her needs met. October 31st! i hope its a good omen! > > > -- Sara- different pathways lead to Nirvana. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 Thanks for your reply Sara. We live on traditional Coast Salish Territories; Vancouver Island, BC. I'm not looking for treatment or cure of any kind for my dd. I just want to better understand how she experiences the world so I can provide the best tools and support for her to have access to all of the good things & valued roles in life....what we all want for our kids! > > > ** > > > > > > Hi all, > > My name is and I have 4 dd's aged 10, 8, 2, & 6mos. Our eldest has > > Trisomy21 (no medical issues). When she was about 7, and about the time we > > started public school, we started to see alot of sensory issues, stuttering, > > new and challenging behaviors, and alot of self-isolating. I feel like quite > > alot of the self-isolating comes from a less than inclusive classroom > > environment but alot of the other stuff isn't so clear. Last fall I asked > > our pediatrician for help and have been referred to a special clinic for > > complex developmental and behavioral disabilities for assessment. Our dr > > expects that an autism-ds diagnosis is likely although she did wonder about > > Tourettes at one point as well. I just read a recent study that kids with DS > > often are late to exhibit characteristics of autism. Has this been anyone's > > experience? > > > > I am a bit militant in my definitions and expecttikns for full inclusion > > and this year we have a FABULOUS team of EA's and a really great teacher. > > Our principal is a tremendous ally as well. We are seeing alot of > > improvements in self-esteem and behaviour. She is really identifying as a > > student and real Reciprocal friendships are emerging. The kids have always > > been willing but grown-ups tend to mess these things up. Still though, LOTS > > of sensory issues and I am anxious to have this assessment (i usually refuse > > all assessments) to see if they have any strategies to help her cope, > > communicate, and get her needs met. October 31st! i hope its a good omen! > > > > > > > > > > -- > Sara- different pathways lead to Nirvana. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 Hi , Welcome to the list! Where are you on the island? We live in the area with our son Darwyn (age 7 DS ASD) and his older sister (age 11). We've also found a great EA and fantastically supportive school (okay one big hicccup last year, but we're back in a good groove now). We know one other family nearby with a son who has DS and ASD (but neither of our kids are inclined to playdates so we have an email relationship). Darwyn started regressing about age 3 and we finally had a diagnosis of autism from PARC in Vancouver (I'm guessing you're going there) when he was 5. I'm not big on labels, but the diagnosis is excellent to get in BC because it entitles you to $6000 per year of self-directed funding for therapists and equipment and training. The best advice I got was to really let them see our son as he is. Not to try to ensure he's on his best behaviour or is bribed by a special snack to be better behaved. And I shared all his quirky behaviours and regressions that fit the ASD profile and I did not boast about his accomplishments. This is not to say that some part of me would have hoped he didn't have autism, but he fits the diagnosis perfectly and I'm practically-minded and at that point I was overwhelmed by his regression and challenging behaviours which were making it hard to enjoy his wonderful quirky personality. The diagnosis gave us therapy funded by the province (which our therapists deliver in true West Coast style- mellowed with a fun approach). A friend who has a child with DS and very similar behaviours to Darwyn got the PDDNOS diagnosis and she was told her child would benefit from the therapies, but did not get the funding. The unfairness hurts. We have also applied for At Home funding which has allowed us to continue with all his therapists. He loves when they come to play. I'd be more than happy to share info with you about that program too. Take care, Sent on the TELUS Mobility network with BlackBerry Re: Diagnosis pending Thanks for your reply Sara. We live on traditional Coast Salish Territories; Vancouver Island, BC. I'm not looking for treatment or cure of any kind for my dd. I just want to better understand how she experiences the world so I can provide the best tools and support for her to have access to all of the good things & valued roles in life....what we all want for our kids! > > > ** > > > > > > Hi all, > > My name is and I have 4 dd's aged 10, 8, 2, & 6mos. Our eldest has > > Trisomy21 (no medical issues). When she was about 7, and about the time we > > started public school, we started to see alot of sensory issues, stuttering, > > new and challenging behaviors, and alot of self-isolating. I feel like quite > > alot of the self-isolating comes from a less than inclusive classroom > > environment but alot of the other stuff isn't so clear. Last fall I asked > > our pediatrician for help and have been referred to a special clinic for > > complex developmental and behavioral disabilities for assessment. Our dr > > expects that an autism-ds diagnosis is likely although she did wonder about > > Tourettes at one point as well. I just read a recent study that kids with DS > > often are late to exhibit characteristics of autism. Has this been anyone's > > experience? > > > > I am a bit militant in my definitions and expecttikns for full inclusion > > and this year we have a FABULOUS team of EA's and a really great teacher. > > Our principal is a tremendous ally as well. We are seeing alot of > > improvements in self-esteem and behaviour. She is really identifying as a > > student and real Reciprocal friendships are emerging. The kids have always > > been willing but grown-ups tend to mess these things up. Still though, LOTS > > of sensory issues and I am anxious to have this assessment (i usually refuse > > all assessments) to see if they have any strategies to help her cope, > > communicate, and get her needs met. October 31st! i hope its a good omen! > > > > > > > > > > -- > Sara- different pathways lead to Nirvana. > > > Quote Link to comment Share on other sites More sharing options...
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