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Down syndrome and Autism (DS-ASD), a dual diagnosis Last week we officially received news that after a plethora of diagnostic tests, our daughter Evangeline, who is almost seven years old and has Down syndrome, also is found to have Autism Spectrum Disorder. Crap. Now, let me back up. This is actually a diagnosis I’ve pushed for for four years. Someone asked me recently, “When was the first time you suspected that Evie had autism?” “The
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Introducing children with Down syndrome in the classroom: Free take home sheet PDF download The following letter is part of the take home sheet I give to Polly’s class every year. I visit the classroom, read a book, and talk to the children about Down syndrome. It’s always a great time, and a fabulous way to promote inclusion. Kids feel much more comfortable if they can talk about things. They ask questions, I do my best
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Down syndrome adoption … four years in “Ma ma ma ma ma,” I place my palm flat against my face and pat my lips, take my daughter Evangeline’s soft, doughy hand in mine, and do it with her. “Ma ma ma ma ma.” She likes it. So I do it again. Evangeline is non-verbal, but she will mumble sounds from time to time. I yearn to hear her say “ma.” We lie in her bed -
6 things a mom struggling with depression can do to start the day off better http://www.stockfreeimages.com/ Okay, here is something I am thinking about this morning. I am a mom struggling with depression. Mornings can be difficult. I usually shy away from posts about ‘things to do to fight depression’, because depression is so individual, and those of us who have it, frankly, get tired of ‘advice.’ But what I am about to share has
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14 Responses
Our Developmental doc has given Boston the duel diagnosis – although our insurance wants a second opinion given by a Neuropsychologist or psychologist. Which I feel is just another hoop to jump through in order to receive the services that he so desperately need. So I jump. Ready your description of Evie is like hearing you describe Boston – down to the part about using my hands instead of his own to do things – I keep asking people why he does this. There are just TOO many issues outside of Down Syndrome, in my heart I know that he has Autism too. I tell myself I have come to grips with this but every once in awhile I cry, and wonder if I am – but I figure that is ok – Brooklyn has been diagnosed with Rett Syndrome for SIX YEARS and I still cry sometimes. Its tough. Two diagnosis seems a bit unfair if you ask me. But we continue on…thats what we do. I hope to learn from you and from Evie and hope maybe I can help you along the way too. Hugs to you my friend.
Gillian thank you for sharing your journey with so many. May you know God’s comfort and peace at this time of receiving the diagnosis and the grief you feel. We love you!
I know autism. Although I don’ t know Down syndrome, let me know if I could help in anyway. Xoxoxo
Thanks…some of the symptons i find in my special one. But what test should we go through to confirm that our special has the autism? Please enlighten me…
We took Evie to a developmental therapist and then a psychologist. You can ask your pediatrician for a referral. Prayers, you guys …
Thanks….our prayers goes to you and Evie too…
Sometimes life is just hard! Glad to hear though that you’re validated in your own appraisal, and in the end this gives you something to work with. Best wishes!
We have a daughter with a dual diagnosis. Most times we feel better understood by parents of other children with Autism than those with Down syndrome.
Thanks for sharing your experience. I’m afraid they are more children with dual conditions that are yet to be diagnosed. BTW, there’s a new book called “When Down syndrome and Autism intersect”. I heard is good. And there is also a facebook group.
[…] They day we got the definitive diagnosis I cried. […]
[…] her but I worried it would all be too much. Evangeline has a dual diagnosis of Down syndrome and autism, she can get overwhelmed easily, and so far at best hasn’t shown much interest in her […]
[…] group for parents who have kids with a dual diagnosis of Down syndrome and autism. I think of myself new to the autism world but in actuality, my fourth daughter Evangeline has held the diagnosis for, oh my goodness what has […]
My daughter also has a dual diagnosis. It took a long time to get, because people would just assume her autistic behaviors were just indications of a more severe case of DS. Some even assumed it wasn’t possible to have both. (Wish I knew where that rule was written!) Helen falls into the second group you mentioned above. Our school district did the diagnosis at my insistence, and then the State Regional Center did their own. There are still doctors who disagree, but that’s simply because they have never seen the two together and don’t know what to make of it. She isn’t quite like your “average” kid with autism–she is more social; and she isn’t quite like your “average” kid with Down syndrome; she is less social. Its a path that isn’t quite like either one. But it’s our path. We have learned some things that have decreased her autistic symptoms and that has helped a lot. Hug your girl (if she will let you) and let yourself grieve, and then embrace, what you have and don’t have. She will probably surprise you.
[…] needs journey can be difficult. Our daughter Evangeline, eight years old (Polly’s sister), has autism and Down syndrome. She is no where close to potty training, and her sensory needs, at times, causes her to lash out […]
[…] group for parents who have kids with a dual diagnosis of Down syndrome and autism. I think of myself new to the autism world but in actuality, my fourth daughter Evangeline has held the diagnosis for, oh my goodness what has […]