Re: KKI and a modified diagnosis for

[Guest guest]

Pat,

I don't think a diagnosis makes a child act " different " than if there isn't

one. Like you said, they are still the same kid and have the same actions.

I think your input is as valuable as everyone else's here. Hope you stay and

continue to give your opinions.

Gail

[Guest guest]

In a message dated 5/4/00 3:24:40 PM Eastern Daylight Time,

patricia.mcgovern@... writes:

<< What a roller coaster this has been! In January, when we got the ASD

tentative

diagnosis, I was far more upset than I expected to be. Now I am not as

relieved

as I might of expected. I guess that all of this just points out that a

label

does not change the person - is exactly who he was before, during and

now after all of this diagnosis stuff. >>

Yes Pat. A roller coaster is a good way of describing it. I think that no

matter what dx you came away with, you'd have these feelings. It's the

anticipation; the not knowing; the hoping you're following the right path;

and then of course, the it's all over now syndrome!! I absolutely KNEW

Maddie was going to be dx'd with autism but still found something to be upset

about (Gee---her scores were really high; I didn't think it was THAT

bad...LOL)

And I sure Would be bummed if you left!!

Donna

[Guest guest]

Pat,

Don't leave! If you are more comfortable here please stay and share with

us. We all have things to learn.

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

----------

>From: patricia.mcgovern@...

>egroups

>Subject: KKI and a modified diagnosis for

>Date: Thu, May 4, 2000, 4:30 AM

>

>Well, we spent Monday and Tuesday at Kennedy Krieger and had appointments with

a

>neuropsychologist (Dr. Hoffmann), an OT ( Lashno) and Dr. Capone. It was a

>great trip and well worth the time, money etc. As I wrote last week, I was

>hoping to get that ASD diagnosis confirmed so that we would have additional

>ammunition to use with the school district. Somewhat to our surprise we did

not

>get it. Although does seem " different " from many other children with

>DS, this is apparently due mainly to his severe sensory issues. He also has

>quite a significant auditory processing problem. Oh yea, and he is hyperactive

>(maybe due to sensory - who knows). Dr. Capone prescribed Buspar - an

>antianxiety drug - for in the hope of minimizing the sensory stuff. He

>just started that on Tuesday so it will take a while for us to see anything

>there. Interestingly, there was no disagreement about the diagnosis at KKI.

>'s social behavoir and lack of ritualistic play (the lining up, flippy

>stuff) just doesn't fit. (Of course we get to Baltimore and he grabs my keys

>and flip, flip, flip - the first time ever!)

>

>What a roller coaster this has been! In January, when we got the ASD tentative

>diagnosis, I was far more upset than I expected to be. Now I am not as

relieved

>as I might of expected. I guess that all of this just points out that a label

>does not change the person - is exactly who he was before, during and

>now after all of this diagnosis stuff.

>

>As I pointed out to Dr. Capone, this list is where I feel that I fit in best -

>as a parent of a kid with DS + __. I hope that you don't mind if I stay!

>

>Pat - mom to , 5.5 yo DS ++, 2 yo with an attitude!

>

>

>

>------------------------------------------------------------------------

>High rates giving you headaches? The 0% APR Introductory Rate from

>Capital One. 9.9% Fixed thereafter!

>1/3010/6/_/691668/_/957468205/

>------------------------------------------------------------------------

>

>

[Guest guest]

pat, of course we dont mind if you stay........ we are all family trudging

along together.......... leah

[Guest guest]

Speaking for myself - since none of us have definitive and scientific diagnosis

- as in provable by objective scientific model testing, if you feel you fit

than you do!!

Sara

>>> patricia.mcgovern@... - 05/04/0 8:30 AM >>>

Well, we spent Monday and Tuesday at Kennedy Krieger and had appointments with a

neuropsychologist (Dr. Hoffmann), an OT ( Lashno) and Dr. Capone. It was a

great trip and well worth the time, money etc. As I wrote last week, I was

hoping to get that ASD diagnosis confirmed so that we would have additional

ammunition to use with the school district. Somewhat to our surprise we did not

get it. Although does seem " different " from many other children with

DS, this is apparently due mainly to his severe sensory issues. He also has

quite a significant auditory processing problem. Oh yea, and he is hyperactive

(maybe due to sensory - who knows). Dr. Capone prescribed Buspar - an

antianxiety drug - for in the hope of minimizing the sensory stuff. He

just started that on Tuesday so it will take a while for us to see anything

there. Interestingly, there was no disagreement about the diagnosis at KKI.

's social behavoir and lack of ritualistic play (the lining up, flippy

stuff) just doesn't fit. (Of course we get to Baltimore and he grabs my keys

and flip, flip, flip - the first time ever!)

What a roller coaster this has been! In January, when we got the ASD tentative

diagnosis, I was far more upset than I expected to be. Now I am not as relieved

as I might of expected. I guess that all of this just points out that a label

does not change the person - is exactly who he was before, during and

now after all of this diagnosis stuff.

As I pointed out to Dr. Capone, this list is where I feel that I fit in best -

as a parent of a kid with DS + __. I hope that you don't mind if I stay!

Pat - mom to , 5.5 yo DS ++, 2 yo with an attitude!

------------------------------------------------------------------------

High rates giving you headaches? The 0% APR Introductory Rate from

Capital One. 9.9% Fixed thereafter!

1/3010/6/_/691668/_/957468205/

------------------------------------------------------------------------

[Guest guest]

Pat, my dear.......

I've known you for HOW long? You are most welcome here. Anyone is, really,

as long as they are respetful of our lives. And, since you feel like you

fit in....I'm sure you respect us!

We saw the same folks except for Dr. Hoffman. Isn't Lashno a wealth of

*understandable* info regarding sensory issues? Did they tell you taht she

has a son with autism and that's how she became interested?

I remember feeling really good about myself as Andy's Mom when I left. That

I had really understood him, and these folks saw the same child I did (not

the one the school district saw). I didn't care so much about the

label....but.......

The day I came home from his Cognitive eval, I started sobbing half way

back to the hotel. On top of that, there was a Oriole's game and I couldn't

get to the right lane to park my car (not that I would have seen it through

the tears). The valet had gotten to know us and our routine and came out to

get me--he was going to put the car where it should be. When he saw my

tears, he summoned the bellman and they practically carried me to my room.

I ran into the sweetest people on that trip. I've never experienced

anything like it.

So yes...it's very much a roller coaster...with more than one loop in it!

glad you're home.

hugs,

j