Re: Introduction/What do they DO at KKI?/Sherry

[Guest guest]

Sorry, meant no disrespect to those who are having trouble getting a

formal dual dx!

We are in rural Sullivan County, NY. Due to my insurance, I had to go

out to Croton-on-Hudson (Westchester County, about 1 1/2 hours away)

to find a developmental pediatrician. The dev. ped. (Dr. Glenn

Belkin) was very familiar in the possibility of a dual diagnosis so

after asking me a bunch of questions, had no problems giving Kayla a

primary diagnosis of Autism.

However, our little county has a major private disability facility,

The Center For Discovery. They don't have a preschool program, but

they are very familiar with the dual diagnosis and even have a

special programming for it. We are very fortunate for that and can't

wait for Kayla to reach Kindergarten age so she can attend --

hopefully with the school district paying for it. If the current CSE

chair is still there, it shouldn't be a problem. No way the local

elementary school nor BOCES will have an " appropriate " program for

Kayla. Of course, proving that is another issue, but we'll cross that

bridge when we get there!

Oddly enough, in our tiny town (pop. 2400) there are three kids with

DS, and besides Kayla, there's an older boy (13) who recently got the

dual dx from their neurologist. The mom had gone to the Judy Clinic

in Hackensack, NJ several years ago and they didn't make the dual dx,

so I can see why it might be hard to get one.

As for why we suspected Kayla had a dual diagnosis, first off, she

was really delayed, even for a child with DS. I'd go to our DS group

meeting and wonder how the heck all the other kids were doing so

much! Then on another message board I frequent, I noticed that the

things other dual dx kids were doing (or not doing) were the exact

things Kayla was doing (or not doing): endlessly playing with musical

flashing toys, not responding to her name, doing weird things with

her hands, loss of speech, no interest in other kids, no looking when

you point or pointing things out to you, no pretend play skills,

spinning toys on the floor, etc. So, that's why I was concerned and

wanted Kayla to be seen by a developmental pediatrician.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

>

> <<I also have a young daughter with the ds/autism. Kayla is three.

I'm

> surprised you had to go to such lengths to get the dual dx.>>

>

> Ecki, may I respectfully suggest you do some reading in the early

archives to discover exactly what a difficult process it has been for

those who came before you and those who are coming up now to get a

dual dx. You are the exception. The " pioneers " who started this list

had to fight like you know what to get diagnoses even for teenagers.

I beg you to not ever take for granted what you have so fortunately

received.

>

> As for KK...we've never been and tho it would be enlightening I'm

sure, we also could not afford to do so out of pocket. I'd be

interested in your story (sorry if I missed it) as to how you were

able to locate a practitioner...what kind? ..... to help you out with

such a young child. I know there are alot more of you coming along

with young kids having been diagnosed and it is fantastic!!! Many of

us went from one place to another and were completely ignored or

ridiculed- I know this still happens in many places. So be very

grateful. Where are you again?

>

> So glad you're here.

> Sherry mom to 18 DS-Aut

>