Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Welcome to the group, . I like to think of my boy as Autistic, then DS. It helps to tell medical providers who are unfamiliar that your child is autistic. Think of the down syndrome as a secondary diagnosis. A lot of docs (family practice, emergency medicine, etc...) will see your kid with the classic characsteristics of down syndrome and think they will be "fun" to interact with during an exam. They will be deeply puzzled by the sensory issues, because that is not what they are expecting. It's better to tell them your kid has autism up front. They understand that better, usually. It will help them better prepare to see your child and accomodate for their needs. Then tell them your kid has Down Syndrome. There are unique things the doc needs to think about with both diagnoses. I personally deal with the autism diagnosis by saying "If I must have a child with autism, thank God that they also have down syndrome." The down syndrome generally leaves them shorter, weaker (hypotonia), and just a bit more sociable. All benefits when struggling with an autistic child. Our kids however, are not simply autistic. They are a whole different breed. And while it is interesting to see what some of our kids are able or unable to do, you will see that there are a whole lot of unique behaviors that many of our kids share at some point in their development: stimming, throwing, poop smearing, escaping, being non-verbal, stubborn, and affinity of some kind to music. I am sure others here will add to this list or disagree with me. Just my 2 cents. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Hi Welcome to the group. The parents in this group are a wealth of information. If you have a problem/issue/question there is probably someone on here that has been there done that. HugsMom to Aden 8 DS ASD ADHD and Aren 5 ADHDSent from my iPod My name is . I have a (nearly) 5 year old daughter with ds/asd. She was diagnosed with asd last November. I am looking forward to gleaning all the wisdom I can, since there seems to be an information vacuum about this even in the medical community (as far as I have seen.) Her asd manifested at about age 3 when she started to regress and add some more stimming behaviors. We are going to try a gluten-free diet...soonish. Penny has a (nearly) 3 year old sister who has an odd speech delay. We are located in Mountain View Ca. = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 I was just thinking that the other day. Penny has NO problem with hugs and snuggles, thank God! She never bites or hits or screams. She can tolerate moderate noise. We even go to " sensory-friendly " movies and to restaurants with her and her sister. Her over all health is very good for a kid with ds. I was already actively plugged in to the Silicon Valley Down Syndrome Network and their svDSnet yahoo group, so I have had good support to get me through this second shot in the gut. > > Welcome to the group, . I like to think of my boy as Autistic, then DS. It helps to tell medical providers who are unfamiliar that your child is autistic. Think of the down syndrome as a secondary diagnosis. A lot of docs (family practice, emergency medicine, etc...) will see your kid with the classic characsteristics of down syndrome and think they will be " fun " to interact with during an exam. They will be deeply puzzled by the sensory issues, because that is not what they are expecting. It's better to tell them your kid has autism up front. They understand that better, usually. It will help them better prepare to see your child and accomodate for their needs. Then tell them your kid has Down Syndrome. There are unique things the doc needs to think about with both diagnoses. >  > I personally deal with the autism diagnosis by saying " If I must have a child with autism, thank God that they also have down syndrome. "  The down syndrome generally leaves them shorter, weaker (hypotonia), and just a bit more sociable. All benefits when struggling with an autistic child. >  > Our kids however, are not simply autistic. They are a whole different breed. And while it is interesting to see what some of our kids are able or unable to do, you will see that there are a whole lot of unique behaviors that many of our kids share at some point in their development: stimming, throwing, poop smearing, escaping, being non-verbal, stubborn, and affinity of some kind to music. I am sure others here will add to this list or disagree with me. >  > Just my 2 cents.  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2012 Report Share Posted April 4, 2012 Welcome Diane - and great that Shane gave the overview of our lives!!!  Welcome to the group, . I like to think of my boy as Autistic, then DS. It helps to tell medical providers who are unfamiliar that your child is autistic. Think of the down syndrome as a secondary diagnosis. A lot of docs (family practice, emergency medicine, etc...) will see your kid with the classic characsteristics of down syndrome and think they will be " fun " to interact with during an exam. They will be deeply puzzled by the sensory issues, because that is not what they are expecting. It's better to tell them your kid has autism up front. They understand that better, usually. It will help them better prepare to see your child and accomodate for their needs. Then tell them your kid has Down Syndrome. There are unique things the doc needs to think about with both diagnoses. I personally deal with the autism diagnosis by saying " If I must have a child with autism, thank God that they also have down syndrome. "  The down syndrome generally leaves them shorter, weaker (hypotonia), and just a bit more sociable. All benefits when struggling with an autistic child.  Our kids however, are not simply autistic. They are a whole different breed. And while it is interesting to see what some of our kids are able or unable to do, you will see that there are a whole lot of unique behaviors that many of our kids share at some point in their development: stimming, throwing, poop smearing, escaping, being non-verbal, stubborn, and affinity of some kind to music. I am sure others here will add to this list or disagree with me. Just my 2 cents.   Quote Link to comment Share on other sites More sharing options...
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