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Hello.. new to site... son has Dual DX


 
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momofrussell
Senior Member


Joined: 05 Apr 2006

Last Visit: 18 Oct 2006
Posts: 530
Location: St. Louis, MO

PostPosted: April 05 2006, 9:40 PM    Post subject:
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Hi there... some of you already know me.. I am "A" and Christina and Renee tell me all about Downsyn Wink Christina told me about the Dual DX forum and was thrilled you guys did this! Russell, my son, is 8 and has the dual DX. He was DX'd when he was 4 1/2. He also was born with cataracts. Others I know with DS and cataracts at birth also have a dual dx. Comforting? Maybe LOL

I am glad you have this forum... years ago... there weren't many of us that I knew.. I felt lost.. and couldn't relate.. heck.. I still can't at times. To me, Russell's Autism is VERY obvious and that is what hinders him... but it's part of who he is and I love him to death!

I am hoping to bond with fellow Dual DX'ers LOL.. and maybe lend support to those that need it! Thanks for having me here!

I will also leave you with this link... to Alton Web's Dual DX write up...

http://www.altonweb.com/cs/downsyndrome/index.htm?page=autism.html

And another read is http://www.disabilitysolutions.org/news.htm
If you go to the Vol 3, issues 5&6.. there is a WONDERFUL paper on the Dual DX... 40 pages worth that I find well worth the read I even passed it out to Russell's teachers and coordinator.

Thanks for having me!

A.

_________________
Adrienne, mom to Regan 13, Russell 8 (DS, Autism, Visually Impaired) and Reece, 5.

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burnsun
Senior Member


Joined: 11 Nov 2004


Last Visit: 17 Oct 2006
Posts: 677
Location: Missouri

PostPosted: April 06 2006, 9:35 AM    Post subject:
Welcome
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I happy you joined us. The developmental pediatrician keeps trying to diagnosis Colin with Autism also, however all his teachers and our pediatrician think he is NUTS!

But I have been reading (since Miranda has cortical visual & Auditory impairment) a lot of studies and papers on the link between visual impairment and ds and autism. Her vision therapist really seems to believe this, and I think it is very possible since our children also have a high incidences of hearing loss- it could really be a factor (IMHO)

I always love reading your stories about your son on Uno Mas!

So Welcome!

_________________
Jane

mom to
Colin (11/19/00) DS
Melea (2/13/02) DS
Adrian (7/04/03)
E. Marisol (5/15/04) DS (soon to have new family photo)
Miranda (2/1/05) DS
Baby #1 & Baby #2 (probably not viable really small- but still kicking as of 10/13/06) due 3/18/2007

wife to great guy Eric
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momofrussell
Senior Member


Joined: 05 Apr 2006

Last Visit: 18 Oct 2006
Posts: 530
Location: St. Louis, MO

PostPosted: April 06 2006, 10:23 AM    Post subject:
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Thanks Jane... you know... Russell had his Medical DX at 4 1/2... we then were moving from IL to MO and although I LOVED our MO EC teacher.. she was VERY knowledgable..her take on Autism was NOT what mine was.. NOR the docs... so it was frusterating... after I learned about Autism.. I learned that Autism is not JUST it's own Medical entity.. it CAN be caused by other medical conditions.. i.e. Fragile X. There is a high incidence of Autism in the Frgile X community. Russell's EC school in our district looks at Autism as some seperate and med thing... not so always.. it's a set of traits.. that CAN be a result of other things.
She would say she thought Russell ACTED like he had Fragile X or CVI... and I would tell her kids w/Fragile X DO have Autism.. it's a known fact!!! LOL.. and CVI is due to usually brain damage.. which Russell never had. But there are alot of kids w/Autism that DID have vision impairments. Russell also has Nystagmus as a result of the lack of lenses for 4 yrs... that too has similiar traits of Autism.. but Autism was above and beyond that.. we cleared that right up with eye doc.. some of what he does IS the Nystagmus.. but not all of it. so... semantically... our district took a different look at Autism.. drives be BATTY actually... heehee... but they know he is Autistic Wink

Russell was born with DS and Cataracts. Having NO vision and having DS and him being a boy there just was a higher incedence of him having Autism. YES alot of kids w/Autism have vision impairments. Our Ped Neuro stated kids w/more then one "issue" like having DS and Vision probs... are more likely to develop Autism... just is...doesn't mean they all will or do.. just higher incidence.. Russell was one of the lucky ones I guess! LOL :rolleyes:

I know it can be tricky with the DS... to decipher what is just maybe a possible trait of DS that overlaps with the ASD or a child who truly falls under the "umbrella". But traits like self stimming.. regardless of DX.. should be curbed at school and hope that none of quick to judge JUST based on things like that. If that makes sense...So tricky... isn't it?

A.

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Adrienne, mom to Regan 13, Russell 8 (DS, Autism, Visually Impaired) and Reece, 5.

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HiCourt
Senior Member


Joined: 18 Jul 2000


Last Visit: 17 Oct 2006
Posts: 970
Location: Shreveport, La

PostPosted: April 06 2006, 10:25 AM    Post subject:
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Hey A!!! Nice to "see" you here.
Talk to you soon,

_________________
Jennifer, mother of Miss Courtney (12, ds), Nicolas (11, gifted, adhd), Austin (7, gifted), and Gerritt (4, gifted), Up With Downs-parent contact, nursing student
http://www.teendigs.com/CourtneyGriffith





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** Hannah's mom ** UK
Super Moderator


Joined: 03 Jun 2004


Last Visit: 15 Oct 2006
Posts: 4983
Location: West Midlands UK

PostPosted: April 09 2006, 11:28 AM    Post subject:
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Hi

I welcomed you in the introductions

but I remember you well from unomas as you welcomed me so warmly over there especially when I was too fretting about hannah and dual diagnosis

we still haven't had a confirmation properly on it but others we have spoken too and a conference I went to sort of confirmed that Hannah is on the start of the scale

we were told that here in the UK it is about 4 years if i want a proper diagnosis

is that the same sort of age in the US

_________________
Jo mummy to Hannah (DS ) who was 3 in July 05,Rebecca who was 2 in Jan 06 and Rachel born 6th April 2006


My beautiful girls



Please visit Hannah's webpage read all about her journey
Hannah's Video
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momofrussell
Senior Member


Joined: 05 Apr 2006

Last Visit: 18 Oct 2006
Posts: 530
Location: St. Louis, MO

PostPosted: April 09 2006, 12:23 PM    Post subject:
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Hi Jen LOL

Jo... I think why they try to DX it more around say the 4 yr old age then the 2 yr old age.. especially with DS.. is that you want to make sure it's not JUST DS and with development being delayed in our kids in general.. the "autism" part has to outweight the DS... if that makes sense. So.. for Russell... he was 4 1/2.. and had the SAME devel he did at say 18 months or 2 yrs old... didn't progress. It's like the behaviors and autism was getting IN the way of progress.. and it wasn't JUST the DS anymore. So... as he gets older.. being around 12 months developmentally .. it would be apparent something else is going on. It's like at 6 months old it would be developementally appropriate and at 4 or 8 yrs old.. it wouldn't be?

I sure hope I made sense LOL.. it's hard for me to explain it sometimes.

I know it does cause "fret"... it's hard.. and I wish we didn't look at it as such. I know for us... well, for me... it's taking me MANY years to adjust and accept the "autism" part.... and I am VERY accepting by nature.. but the darn stuff gets in the way so much!!! DARN IT! LOL It's taken many years for me to adjust to Russell NOT being like a "typical child w/DS"... I know ALL our kids are different.. but there still is some normalacy in developement even if all our kids acheive it at different ages.. but for Russell.. it went beyond that.

I always feel bad too when parents wonder if their child does have "autism" too... because some of the DS traits overlap. I feel really bad because I don't want to scare anyone! Wink

A.

_________________
Adrienne, mom to Regan 13, Russell 8 (DS, Autism, Visually Impaired) and Reece, 5.

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