Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 linda i can relate to the hitting themselves. Our son hits his head when he is mad or gets sensory overload. welcome here i feel we fit in here. mary nc New member here Hello Group, ???? We are new to the listserve today.? My daughter has DS and Autism.? She will be 10 next month.? We've known about the DS since about 4 months before she was born and we've known about the autism for a little over 3 years now.? We've only been actually dealing with the fact that she has autism for about the last year though.? She has a pretty major heart condition called Tetralogy of Fallot (actually rare in kids with DS).? She also had pretty severe hypotonia so she didn't walk until she was?about 3 years, 4 months.? She has a feeding tube thanks to her heart issues and lots of time on the ventilator?and a very hard time after open heart surgery and more time on the ventilator.? She had 4 sets of ear tubes, had her tonsils and adenoids out (which really helped her health a great deal) and is?wearing glasses for the second time around.? She also absolutely freaks about the dentist so that has to be done under sedation, but since she doesn't eat much by mouth we don't have a lot of cavities and such (so the silver lining). ???? We've been somewhat involved with DSALA since was a baby and they were very helpful in our learning about all the physical issues we face and helping us to advocate for appropriate healthcare for her as well as planning for her financial future and such.? When she was about 3 or 4 though she started to be very different from the other kids with DS and we didn't feel we fit in - lots of other parents seemed to believe we were " bad parents " because of her behaviors and so we kind of backed off.? We kind of wondered if we were really bad parents too, but we seemed to be " good parents " with our other kids?? ?? Then we tried to get some help for her behaviors when she was about 6 1/2 and we were told that the clinic we went to didn't offer services to kids with autism.? I was totally shocked, couldn't this psychologist SEE that she had DS?? I mean her DS features are pretty mild and she is thin so they are even less obvious but a trained professional?? I very nicely asked him if he couldn't tell she had DS and he said " yes " but that she also had autism.? It explained a lot, but we weren't ready to figure out how to deal with this yet.? I did tell the teacher at her school and I talked about it at IEP's but it never got into her record and she wasn't getting any additional services (like increased speech therapy) which seemed like they should have been offered for a kid with autism.? I found out later that our school district wasn't going to give her anymore no matter what, until we got an attorney so that answers that question! ???? This last year we got involved a little with TACA and Autism Speaks and now we are getting trained in what to do to deal with the autism issues.? We're having her independently evaluated and through our neuropsychologist found a psychiatrist who is helping us get the proper medications to help her stop hitting herself in the face.? Things aren't perfect, but they are SO MUCH better.? She was hitting herself up to 300 times a day, and now we are WAY down, yesterday it was about 10 times.? Today, it's up a bit, but still, maybe 20 times (we were out to places we'd never been before).? We finally have some hope that we can take her out and not have her slap the heck out of her beautiful face. I look forward to what you all are?doing to get better care and services for your big and little guys.? Higgins ('s mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Hi , entering the double digit soon, at least you will not be alone when you begin to enter the " girlie challenging issues " within time as there are several here on the list that have daughters. Glad you have found some help to where your daughter is at as many of us reading your post can relate to what you had shared. Sounds like you are on the right track, thank goodness. Welcome aboard. Irma,19,DS/ASD Wife, mom to 3 sons and my 4 y/o grandson. > > Hello Group, > > ???? We are new to the listserve today.? My daughter has DS and Autism.? She will be 10 next month.? We've known about the DS since about 4 months before she was born and we've known about the autism for a little over 3 years now.? We've only been actually dealing with the fact that she has autism for about the last year though.? She has a pretty major heart condition called Tetralogy of Fallot (actually rare in kids with DS).? She also had pretty severe hypotonia so she didn't walk until she was?about 3 years, 4 months.? She has a feeding tube thanks to her heart issues and lots of time on the ventilator?and a very hard time after open heart surgery and more time on the ventilator.? She had 4 sets of ear tubes, had her tonsils and adenoids out (which really helped her health a great deal) and is?wearing glasses for the second time around.? She also absolutely freaks about the dentist so that has to be done under sedation, but since she doesn't eat much by mouth we don't have a lot of cavities and such (so the silver lining). > ???? We've been somewhat involved with DSALA since was a baby and they were very helpful in our learning about all the physical issues we face and helping us to advocate for appropriate healthcare for her as well as planning for her financial future and such.? When she was about 3 or 4 though she started to be very different from the other kids with DS and we didn't feel we fit in - lots of other parents seemed to believe we were " bad parents " because of her behaviors and so we kind of backed off.? We kind of wondered if we were really bad parents too, but we seemed to be " good parents " with our other kids?? > ?? Then we tried to get some help for her behaviors when she was about 6 1/2 and we were told that the clinic we went to didn't offer services to kids with autism.? I was totally shocked, couldn't this psychologist SEE that she had DS?? I mean her DS features are pretty mild and she is thin so they are even less obvious but a trained professional?? I very nicely asked him if he couldn't tell she had DS and he said " yes " but that she also had autism.? It explained a lot, but we weren't ready to figure out how to deal with this yet.? I did tell the teacher at her school and I talked about it at IEP's but it never got into her record and she wasn't getting any additional services (like increased speech therapy) which seemed like they should have been offered for a kid with autism.? I found out later that our school district wasn't going to give her anymore no matter what, until we got an attorney so that answers that question! > ???? This last year we got involved a little with TACA and Autism Speaks and now we are getting trained in what to do to deal with the autism issues.? We're having her independently evaluated and through our neuropsychologist found a psychiatrist who is helping us get the proper medications to help her stop hitting herself in the face.? Things aren't perfect, but they are SO MUCH better.? She was hitting herself up to 300 times a day, and now we are WAY down, yesterday it was about 10 times.? Today, it's up a bit, but still, maybe 20 times (we were out to places we'd never been before).? We finally have some hope that we can take her out and not have her slap the heck out of her beautiful face. > I look forward to what you all are?doing to get better care and services for your big and little guys.? > > Higgins ('s mom) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 > > > > Hello Group, > > > > ???? We are new to the listserve today.? My daughter has DS > and Autism.? She will be 10 next month.? We've known about the DS > since about 4 months before she was born and we've known about the > autism for a little over 3 years now.? We've only been actually > dealing with the fact that she has autism for about the last year > though.? She has a pretty major heart condition called Tetralogy of > Fallot (actually rare in kids with DS).? She also had pretty severe > hypotonia so she didn't walk until she was?about 3 years, 4 months.? > She has a feeding tube thanks to her heart issues and lots of time on > the ventilator?and a very hard time after open heart surgery and more > time on the ventilator.? She had 4 sets of ear tubes, had her tonsils > and adenoids out (which really helped her health a great deal) and > is?wearing glasses for the second time around.? She also absolutely > freaks about the dentist so that has to be done under sedation, but > since she doesn't eat much by mouth we don't have a lot of cavities > and such (so the silver lining). > > ???? We've been somewhat involved with DSALA since was a baby > and they were very helpful in our learning about all the physical > issues we face and helping us to advocate for appropriate healthcare > for her as well as planning for her financial future and such.? When > she was about 3 or 4 though she started to be very different from the > other kids with DS and we didn't feel we fit in - lots of other > parents seemed to believe we were " bad parents " because of her > behaviors and so we kind of backed off.? We kind of wondered if we > were really bad parents too, but we seemed to be " good parents " with > our other kids?? > > ?? Then we tried to get some help for her behaviors when she was > about 6 1/2 and we were told that the clinic we went to didn't offer > services to kids with autism.? I was totally shocked, couldn't this > psychologist SEE that she had DS?? I mean her DS features are pretty > mild and she is thin so they are even less obvious but a trained > professional?? I very nicely asked him if he couldn't tell she had DS > and he said " yes " but that she also had autism.? It explained a lot, > but we weren't ready to figure out how to deal with this yet.? I did > tell the teacher at her school and I talked about it at IEP's but it > never got into her record and she wasn't getting any additional > services (like increased speech therapy) which seemed like they should > have been offered for a kid with autism.? I found out later that our > school district wasn't going to give her anymore no matter what, until > we got an attorney so that answers that question! > > ???? This last year we got involved a little with TACA and Autism > Speaks and now we are getting trained in what to do to deal with the > autism issues.? We're having her independently evaluated and through > our neuropsychologist found a psychiatrist who is helping us get the > proper medications to help her stop hitting herself in the face.? > Things aren't perfect, but they are SO MUCH better.? She was hitting > herself up to 300 times a day, and now we are WAY down, yesterday it > was about 10 times.? Today, it's up a bit, but still, maybe 20 times > (we were out to places we'd never been before).? We finally have some > hope that we can take her out and not have her slap the heck out of > her beautiful face. > > I look forward to what you all are?doing to get better care and > services for your big and little guys.? > > > > Higgins ('s mom) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 > > > > > > Hello Group, > > > > > > ???? We are new to the listserve today.? My daughter has DS > > and Autism.? She will be 10 next month.? We've known about the DS > > since about 4 months before she was born and we've known about the > > autism for a little over 3 years now.? We've only been actually > > dealing with the fact that she has autism for about the last year > > though.? She has a pretty major heart condition called Tetralogy of > > Fallot (actually rare in kids with DS).? She also had pretty severe > > hypotonia so she didn't walk until she was?about 3 years, 4 months.? > > She has a feeding tube thanks to her heart issues and lots of time > on > > the ventilator?and a very hard time after open heart surgery and > more > > time on the ventilator.? She had 4 sets of ear tubes, had her > tonsils > > and adenoids out (which really helped her health a great deal) and > > is?wearing glasses for the second time around.? She also absolutely > > freaks about the dentist so that has to be done under sedation, but > > since she doesn't eat much by mouth we don't have a lot of cavities > > and such (so the silver lining). > > > ???? We've been somewhat involved with DSALA since was a > baby > > and they were very helpful in our learning about all the physical > > issues we face and helping us to advocate for appropriate healthcare > > for her as well as planning for her financial future and such.? When > > she was about 3 or 4 though she started to be very different from > the > > other kids with DS and we didn't feel we fit in - lots of other > > parents seemed to believe we were " bad parents " because of her > > behaviors and so we kind of backed off.? We kind of wondered if we > > were really bad parents too, but we seemed to be " good parents " with > > our other kids?? > > > ?? Then we tried to get some help for her behaviors when she was > > about 6 1/2 and we were told that the clinic we went to didn't offer > > services to kids with autism.? I was totally shocked, couldn't this > > psychologist SEE that she had DS?? I mean her DS features are pretty > > mild and she is thin so they are even less obvious but a trained > > professional?? I very nicely asked him if he couldn't tell she had > DS > > and he said " yes " but that she also had autism.? It explained a lot, > > but we weren't ready to figure out how to deal with this yet.? I did > > tell the teacher at her school and I talked about it at IEP's but it > > never got into her record and she wasn't getting any additional > > services (like increased speech therapy) which seemed like they > should > > have been offered for a kid with autism.? I found out later that our > > school district wasn't going to give her anymore no matter what, > until > > we got an attorney so that answers that question! > > > ???? This last year we got involved a little with TACA and Autism > > Speaks and now we are getting trained in what to do to deal with the > > autism issues.? We're having her independently evaluated and through > > our neuropsychologist found a psychiatrist who is helping us get the > > proper medications to help her stop hitting herself in the face.? > > Things aren't perfect, but they are SO MUCH better.? She was hitting > > herself up to 300 times a day, and now we are WAY down, yesterday it > > was about 10 times.? Today, it's up a bit, but still, maybe 20 times > > (we were out to places we'd never been before).? We finally have > some > > hope that we can take her out and not have her slap the heck out of > > her beautiful face. > > > I look forward to what you all are?doing to get better care and > > services for your big and little guys.? > > > > > > Higgins ('s mom) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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