Another Ian Update

[Guest guest]

That's really how I think of , as an autistic kid with Down syndrome. I

think if he only had Down's, he would be near normal. The DS doesn't effect him

as much as the autism.

Loriann

[Guest guest]

In a message dated 8/3/00 10:33:27 AM Eastern Daylight Time,

ckc@... writes:

<< The hardest thing to hear her

say was that it would help us if we stopped thinking of him as a Down

syndrome kid with autism, and started thinking of him as an autistic kid

with Down syndrome.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94) >>

CK,

That's what we think of Seth as too. The Downs is secondary to the Autism.

Although it is formerly considered on all his paperwork as Downs/Autism. We

almost don't even realize the Downs anymore and are still surprised when

people say " Oh is he Downs? " instead of " Oh is he Autistic? " . LOL Doesn't

seem like the Downs is anything to deal with, though I wouldn't know because

there are no other kids around here like Seth! LOL But the Downs kids I've

seen don't seem to be such a handful. I can't imagine dealing with the duel

kid and not know what you are dealing with. Must be really hard for the

parents out there still that still don't know that their kid is Autistic!

Gail, Mom to; Seth-4, jo-8, Becky-9, -23, Jen-24, Grandma to

Errick-4

and wife to -my hero

[Guest guest]

ck,

i dont mean to sound ignorant, but is the intervention specialist telling you

to focus on the autism side of the dual diagnosis because that is where the

load of the issues with behavior stim from and not the downs side of the

issue.???????just curious,,,,,,,, leah, aka peachy

[Guest guest]

The good news is that Ian's behavior, while not great, hasn't been as

terrible as it was that day last week. My husband accompanied Ian on the

big field trip yesterday, as requested, and the day went well.

I had that meeting with the crisis intervention person on Monday, and she's

coming out to see him at home tomorrow. The gist of what she said was that

he is " unique, " that she had never seen this particular combination of Down

syndrome and autism before but that she recognized each in him, that we're

doing a good job with what we've been given. The hardest thing to hear her

say was that it would help us if we stopped thinking of him as a Down

syndrome kid with autism, and started thinking of him as an autistic kid

with Down syndrome.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

CK,

That bothered me too. I too was told that we should look at the Autism as

his primary diagnosis and that he has Down Syndrome too. And yes, are kids

are very unique, I agree with her there. They all have their own blueprints,

as similar as some of our kids are to each other.

[Guest guest]

In a message dated 8/3/00 9:33:42 AM Central Daylight Time,

ckc@... writes:

<< The hardest thing to hear her

say was that it would help us if we stopped thinking of him as a Down

syndrome kid with autism, and started thinking of him as an autistic kid

with Down syndrome. >>

I think this is SO true, CK. Difficult to hear, but true. I'd just never

heard it put quite that way. We have felt since 's diagnosis that the

autism is so much harder to deal with than the DS. This lady sounds like she

really understands this concept. Maybe she will be good for Ian and for your

family. Thanks for sharing.

Maureen

[Guest guest]

Leah,

Yes, I think that's what she meant, that we should devote more time to

dealing with the autistic behaviors -- even so far as getting them attended

to on his IEP.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)