Re: Newly diagnosed

[Guest guest]

I totally agree that it helps to surround yourself with all types of kids with

disabilities and their families. I learn so much from all of the people I have

met along the way. I just started a small parent group for families of children

who have disabilities. I don't care what is wrong because we each face our

unique challenges. Sometimes, their life makes mine look easy. I learned the

most from my Michigan parent group and their were families of all types of

disabilities and of all ages in life. It was fabulous!

Holly

[Guest guest]

I agree with about Dual Diagnosis groups. I think they will start

popping up. I was wondering, how many people are in IL? The is an Autism

Speaks walk on May 18 and I thought getting a team together to raise some

dual diagnosis awareness and get to know some people in the area. I know I

am not ready to officially start a group, but would love getting contact

with more people in our situation.

Hanover Park, IL

_____

From: [mailto: ] On Behalf

Of McDonnell

Sent: Sunday, January 27, 2008 12:24 PM

To:

Subject: RE: Re: Newly diagnosed

Ecki and ,

Thank you for your candor regarding the struggles that all of us have when

we are faced with the differences of our children vs. those children who

have DS alone. I think that we try to be as positive as possible, and

celebrate each accomplishment of our child, but sometimes it is very hard

when we see how other children can do things that ours can't do. It's just

human to have these feelings- any parent would have the same reaction if

they were in our shoes.

I am so amazed and blessed by the tenacity and courage of the members of

this list serve and how all of us continue to " fight the good fight " despite

the tremendous daily challenges. It's true that most folks couldn't or

wouldn't want to be in our situation- yet, they do not know our precious

children and how they are so worth every opportunity to help them realize

their full potential. Therefore, I believe that it is no coincidence that we

have the children that we have- we are the perfect parents for them, despite

our own shortcomings.

I also hope that local dual diagnosis support groups will be available in

the near future- it would be great to meet other folks in our situation face

to face on a regular basis. In the meantime, thank goodness for this group!!

The wisdom and support from the members has both validated my concerns and

given me strength to run the race, especially on certain occasions when I

didn't think I could go one more step.

Sending support and wishing all of us abundant blessings in our daily

journey,

Mom to , 4 yrs.old

DS/PDD-NOS

To: @yahoogrou <mailto:%40yahoogroups.comFrom> ps.comFrom:

keith9164aol (DOT) <mailto:keith9164%40aol.comDate> comDate: Sun, 27 Jan 2008

11:25:42 -0500Subject: Re: Re: Newly diagnosed

Ecki,I am so with you on this one. I have struggled with for a long time and

have not joined any of the autism groups yet, but am hoping to get a jump on

this this year. I do wish there were local support groups for kids that have

both diagnosis. I live in North Carolina and whenever I have attended DS

support meetings(which I consequently was in charge of for a few years) I

remember feeling very sad and like what am I doing wrong, what do they know

that I don't. I just got a call in between writing and it was from a Mom who

has a typical DS child who attends the same school as my daughter only she

is in a regular classroom with a one on one. My daughter is in the Autistic

classroom with one on one I did not even ask for so I feel blessed in so

many ways to have her in her base school, with good teachers, assistants and

a place where she is accepted, but when I got the call, the Mom was asking

if we wanted tickets to see her daughter perform in a ballet recital today.

I can't go since we have church at 1:00 but a part of me could not help but

feel a little envious that her child can do this. That getting a place and a

person to work one one one with her child was easy, she did not have to

struggle to get anything. She said I want my daughter to go to school here ,

I want my daughter to dance here etc. I have always had to struggle and

fight for everything and persist and take steps back and forth to get

anything for my daughter. All that being said, I still feel grateful for has

been given and done for my daughter this year. We have gone from darkness to

light this year.The peace I have felt has been the biggest blessing I could

ever ask for.I do keep hope alive though that we will be able to find a

support group that we will fit into on a local level one day. We are not

alone I'm sure but in the meantime I have you all.

**************Start the year off right. Easy ways to stay in shape.

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aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489[Non-text portions

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[Guest guest]

Hi all! Well, we had our Walk for Now Autism Kick-off Luncheon today and met

Bell from Autism Speaks. He had alot of good info in regards to the

research going on at AS, and I, of course, hit the topic of the dual dx.

Nothing new on that front to date, but they are expanding their research that

will soon include that. Right now, because I guess the numbers are more obvious

right now they are studying the ddx of Fragile X, Rett's syndrome and Autism.

Hopefully, as more kids with DS get diagnosed, the numbers will stagger them and

they will have to bring the research for our DDx to the forefront as well.

Liz

[Guest guest]

Liz,

You are opening the doors as you were able to attend and brought up

the fact of the dual dx's of DS & AU and when they are ready they will

know who to come to when they come across others in a similar path.

I know you will continue here on advocating, so it will not go silence

in the mean time.

It is all baby steps towards this direction. Look how we all came

together when no one else understood us from the educational or

medical arena too. It is time for us to spread out wings and do what

we can.

I must say thank you even across the miles for doing what you are

doing here.

Irma,19,DS/ASD

>

> Hi all! Well, we had our Walk for Now Autism Kick-off Luncheon

today and met Bell from Autism Speaks. He had alot of good info

in regards to the research going on at AS, and I, of course, hit the

topic of the dual dx.

>

> Nothing new on that front to date, but they are expanding their

research that will soon include that. Right now, because I guess the

numbers are more obvious right now they are studying the ddx of

Fragile X, Rett's syndrome and Autism.

>

> Hopefully, as more kids with DS get diagnosed, the numbers will

stagger them and they will have to bring the research for our DDx to

the forefront as well.

>

> Liz

>

>

[Guest guest]

Irma: Mike & I have tried to Autism by the throat. We participated in the

first Walk last year and promote the DDx at all times! I hope the entire crew

on this site finds the strength in themselves and grabs ahold of it and

participates in their local Walks this year. The more we are out there in front

of everyone, the more we will get noticed. Our local politicians know who we

are now...and we will not be pushed in the back of the line. With all of us in

this together, we can get our kids noticed...and supported!

Liz