Re: NDSS

[Guest guest]

Hey, I just picked up that book yesterday at and Noble! I am pursuing

a 2nd opinion of Hannah's Autism at UW and there's a whole list of stuff in

there that may look like Autism but would indeed be something else - seizures

etc. So, I just wanted to be armed and ready and play devil's advocate when we

meet.

Glad you're back Joan and you had a good trip.

a

[Guest guest]

Hi Joan,

Thanks on this information of the book. I too, will add it to my book

shelf to read. Just wanted to share a brag scoop.

Thursday afternoon I had an appt. with the MHMR center and they were

very pleased with Dr. 's report. Boy, they kept

complimenting me on it and the question was asked how did I come

across this dual dx and of course once again ahem, you were mentioned

and they were just telling me how fortunate I was coming across some

great info for . The MHMR staff were so impressed with

as I had him with me, my dh was smiling as he loved hearing how they

were pleased and very helpful. I was re-applying for ABA services

again and so he was accepted once again, then I was told about some

other funds that were available through GR funds,(General Revenue).

After finishing up with the first appt. that was scheduled with the

first case worker for the In-Home Family Services they had asked if I

wanted to set another appt. which I thought was planned for some

other date but I was seen with an MR Intake who had asked if I had

anything planned as he took us in immediatley to discuss the GR

funding available. I filled out all the questionaire info and the MR

In-take too was going on and on as he was so impressed hearing of

what I have learned through you and the group which had opened the

doors for me to take action and doing something about it. They kept

reviewing Dr. s notes/Cin's reports all I heard was " you

have some great information here and not just from any medical

professionals but from specialist " . AMEN to this.

What a Blessing I say!

Glad you made it to and from safely and had enjoyed your trip out in

DC.

Thanks for all you do!

Hugs!

Irma,16,DS/ASD

P.S. Oh, the G. R. Funds will be used for Camp, respite, etc. I say

the timing is right as I feel comfortable now letting go, but slowly.

[Guest guest]

Hi Joan,

Yes, it was me, Sue, who asked you about your bike ride to Mt.

Vernon. I'm glad you were able to do it while in DC. It's a

beautiful place, although not so comfortable with all the humidity

especially since you aren't use to that in Oregon(you're so lucky).

Anyway, I thoroughly enjoyed the NDSS conference! Your two workshops

were very interesting and informative. I was so thrilled and happy

to meet you and be a part of the conference. You did a great job

Joan. You were relaxed and down-to-earth. I appreciate the time and

dedication you devote to getting information out to families of kids

with the dual diagnosis. It is so important--THANK YOU!!!!!

I would like to do a brief introduction as well. Hi everybody, I

have been a " lurker " on this site for a couple of years now. I am

mom to two kids. My son, Everett, will be 8 years old at the end of

September. He has Down syndrome/PDD. He was officially diagnosed

with PDD when he was 6 years old. We had suspected something

was " different " in his development by the time he was 4 years old.

It took a while to get the official diagnosis because of his health

issues. Everett was diagnosed with leukemia in Jan. 1999 when he was

2 1/2 years old. He spent 8 months in and out of the hospital

getting chemotherapy and fighting for his life. Once he was in

remission and remained healthy, we noticed he was no

longer " signing " or saying words. We thought it was because of all

the time spent in the hospital trying to beat the leukemia, etc.

Anyway, to make a very long story short, we began to suspect autism.

Then I stumbled upon Joan's Disability Solutions article on

DS/autism, and tears streamed down my face as I read it. I

thought, " this is Everett " and it really confirmed for us that our

son did have the dual diagnosis. Like many of you, it also took time

for some in the medical profession and educators to believe it.

Everett has some sensory issues which seem to be getting better as

he gets older. Everett also had heart surgury when he was 6 months

old. He is doing great " health-wise " now. He's been in remission

almost 5 years, which is such a blessing. Oh, we live in land

about 11 miles from Washington, DC. Anybody else live in this area?

Did any of you attend the conference? Once again -- THANK YOU JOAN

FOR ALL THAT YOU DO. YOU ARE A SPECIAL PERSON INDEED.

In , Joan Medlen <jegm2002@y...> wrote:

> Hi Everyone:

>

> Just a quick note to let you know that I have finally

> returned home (but am still swamped!). I had a great

> time in DC--I'm not sure who came up and asked me

> about my bike ride (Sue??) but it sure made me feel

> like I had a *real* friend out there!

>

>

[Guest guest]

You probably need to upgrade your adobe reader program. I found that

lots of people were having trouble and I know it's because their

Acrobat/ADobe reader program was older. They didn't downsample the

file so it's accessible to older versions.

Instructions on where to find it are here:

http://www.disabilitysolutions.org/AdobeRdr.htm

j

>

> Hi, Everyone...I can't get anything to come up....only a white

screen.

> Joan...is there any address that I can write to get a copy of

it. I would love

> to have it to see all of the kids in it. Take care, Everyone.

> Margaret

>

>

>

[Guest guest]

Adobe's newest version is 7.0.. you will need to download the newest

version. I thought my adobe was up to date to but it was not and it

wouldn't come up until I DL'd the newest version. www.adobe.com If you

look off to the left there is a red and white icon thing and it will

say get adobe reader, or something to that effect.. just click that.

A.

>

> J ~~~

> I have Adobe 6.0. The web site comes up and there is just a blank,

white

> space. I am too computer ditzy to figure it out!!!

> Margaret

>

>

>