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  • 1 year later...

There are quite a few people without official diagnosis in this group. We just

received our official ASD diagnosis in August. Going thru the hoops, which took

11 months, was mostly for the funding (BC has great funding for autistic kids

under age 6) and school services. Its good have, but we really knew Darwyn was

autistic when autism was gently suggested over a year ago and it clicked as we

read more. He had stopped fitting the DS mold at about age 3 when he began

regressing.

This email list really helped me the first few months to accept it, and think

about the future and now the list still helps as the only group of people who

understand our world and with whom I can be so honest.

- mom to Darwyn (age 5. DS/ASD and a few heart surgeries too)

, Canada

Re: Question

My son is not diagnosed as DS and Autism, but in my personal opinion as a mother

I do think he is and have believed it for some 2yrs now. He is 4yrs. Old and I

can see he stands out different in a group of children with DS and know most of

his behaviors are not due to him having DS. I have not tried getting a dual

diagnosis because he still receives behavioral therapy and from CARD the center

for autism and related disorders so at this point I don't see the need for the

dual diagnosis. I don't know if everyone in this site has the dual diagnosis or

anyone in my situation.

>

> Hi, Everyone.........they are all separate groups. What you post

> on that site does not appear on our site. Do you have a dual dx'd

> child.....DS and autistic? That is what most of our kids are on this site.

Feel

> free to join in anytime.

>

> Take care, Everyone.

> Margaret

>

>

>

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Wow I can relate to you in so many ways and my son also loves signing time and

the school uses it also. I think you are the first person I can relate to thank

you so much for sharing.

mom to Elias 4yrs.

> > >

> > > Hi, Everyone.........they are all separate groups. What you post

> > > on that site does not appear on our site. Do you have a dual dx'd

> > > child.....DS and autistic? That is what most of our kids are on this

site. Feel

> > > free to join in anytime.

> > >

> > > Take care, Everyone.

> > > Margaret

> > >

> > >

> > >

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I remember when Elie was in Kindergarten, the teacher started a song of 10

little birds sitting on a faence, etc. Then at halloween it became pumkins,

then turkeys, then pine trees, then bunnies. Byt spring Elie srrted to

sing " 10 little birdies,,,,,,........ IT took him from September to April to

get the message of the song. But he sanag so nicely :`).

We take our joy where we find it.

And chocolate ice cream is a staple in our house as well.

>

>

> The regression was so depressing for me. Before I was the upbeat mom with a

> child with DS who was going to excell and show the world how much someone

> with DS can do. Then around age 3 Darwyn stopped feeding himself and lost

> his few words and then he even stopped playing games with his older sister.

> We used to all play catch but he became uninterested and then he started

> throwing things more often and one night I noticed he would only look at my

> forehead not into my eyes. At first we thought his heart surgery was the

> culprit and he was just really slow to recover, but luckily his speech

> therapist recognized autism.

> The regression does have an endpoint. 2 years later he is relearning his

> songs (fixated on Twinkle twinkle little star)and he can look at us more and

> lately he has been trying to talk. He loves school and his therapists. I

> give credit to the Signing Times DVD's which he loves and gave him a visual

> language that we could learn too. And a preschool that worked so hard to

> integrate him and help him and his new behaviour interventionist who

> motivates him so much. Okay and I suppose having family who loves him

> doesn't hurt. We've really changed our lives to create a world where he is

> happier. A world of structured routine and limited outings from home and of

> course, chocolate ice cream. His sister even invented new games to play with

> him. Life is not easy, but it has its lovely moments again.

>

>

> Re: Question

>

> That is how I feel that my son does not fit the DS mold I like how you put

> that. I began to see this at 2yrs. old and coworkers began to point it out

> since they knew more about DS and autism and they began to point things out

> that are not typical in DS. I know that when I read from the group of only

> DS I can only relate to half of what is going on with them I saw my son

> start regressing before 2yrs his first words were agua (water in spanish)

> and No then until over a year later he had a new word but had to start over.

> Songs that he learned at 2yrs he would later forget them and could not

> follow his favorite songs anymore. I did not understand most of the children

> in the group (all children with DS) did not go through this well not that I

> knew of and all were progressing much faster than my son but most important

> not regressed.

>

>

> > >

> > > Hi, Everyone.........they are all separate groups. What you post

>

> > > on that site does not appear on our site. Do you have a dual dx'd

> > > child.....DS and autistic? That is what most of our kids are on this

> site. Feel

> > > free to join in anytime.

> > >

> > > Take care, Everyone.

> > > Margaret

> > >

> > >

> > >

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