This is the post I made on Dr. Phil's board!

March 25, 2008

Parents of Kids with Down syndrome & Autism

I want to say KUDOS to Cyndi and her family for bringing our lives to the

forefront. We are a group unto ourselves...Parents of children with the dual

diagnosis of Down syndrome and Autism. We are not recognized by many because

when people look at our family member, they see the Down syndrome..and say,

" Ahhh, he/she has Downs..that's why they are behaving that way. " WRONG!

haven't any on you (those with children, I mean) ever said something like " Oh, I

wish I never had kids or If I knew you were going to be a girl, I'd put in for

a refund...?; ...or something to that affect ? If you say, Never...then you

haven't been a parent long enough yet.

I'm a mom to 3 wonderful girls, 28, 22 and 8. However, our 8 yr. old has Down

syndrome and Autism, and boy oh boy, don't we question over and over again as to

why we had to win the lottery with the dual diagnosis? Not that we don't love

her with all our hearts but WHY us?

Not only do our children have the issues with developmental delays and medical

issues due to the Down syndrome, we also live on a tightrope, never knowing what

is going to set our child off. Massive meltdowns, non-communicative,

aggressive, self-injurious, non-eaters, pica, sensory issues, socialization

problems...I could go on. We don't have a national support group. We have our

online support group where we can support, advise and befriend others who's

lives have been affected by the additional diagnosis of Autism. Yes, Autism

numbers are on the rise; however, not many know that 10% of those with Down

syndrome are/will be affected by it as well.

We don't need criticism, we need recognition of our children and what their

lives are like. They are locked inside themselves..and cannot get out. There

is some research being done on the co-morbidity of these 2 diagnoses; but not

enough intervention out there for us to utilize. We don't fit into the typical

Down syndrome community and we don't fit into the typcial Autistic community.

We are we to go?

Please do not condemn Cyndi for having the guts to go into the public arena and

invite you all in to see what life is like for many of us. Give her the support

and commendations she deserves for seeking help anywhere it can come from.

March 25, 2008

Liz, I warmly embrace and hug you for your post to Dr. Phil's

website. My daughter read what you wrote and said Thanks.She posted

on the Dr. Phil website last night and I cried after reading her post

and her poem for her little brother.Hey Liz who all do you want to

email the help letter to? Cyndi B

>

> Parents of Kids with Down syndrome & Autism

>

> I want to say KUDOS to Cyndi and her family for bringing our lives

to the forefront. We are a group unto ourselves...Parents of

children with the dual diagnosis of Down syndrome and Autism. We are

not recognized by many because when people look at our family member,

they see the Down syndrome..and say, " Ahhh, he/she has Downs..that's

why they are behaving that way. " WRONG!

>

> haven't any on you (those with children, I mean) ever said

something like " Oh, I wish I never had kids or If I knew you were

going to be a girl, I'd put in for a refund...?; ...or something to

that affect ? If you say, Never...then you haven't been a parent

long enough yet.

>

> I'm a mom to 3 wonderful girls, 28, 22 and 8. However, our 8 yr.

old has Down syndrome and Autism, and boy oh boy, don't we question

over and over again as to why we had to win the lottery with the dual

diagnosis? Not that we don't love her with all our hearts but WHY

us?

>

> Not only do our children have the issues with developmental delays

and medical issues due to the Down syndrome, we also live on a

tightrope, never knowing what is going to set our child off. Massive

meltdowns, non-communicative, aggressive, self-injurious, non-eaters,

pica, sensory issues, socialization problems...I could go on. We

don't have a national support group. We have our online support

group where we can support, advise and befriend others who's lives

have been affected by the additional diagnosis of Autism. Yes,

Autism numbers are on the rise; however, not many know that 10% of

those with Down syndrome are/will be affected by it as well.

>

> We don't need criticism, we need recognition of our children and

what their lives are like. They are locked inside themselves..and

cannot get out. There is some research being done on the co-

morbidity of these 2 diagnoses; but not enough intervention out there

for us to utilize. We don't fit into the typical Down syndrome

community and we don't fit into the typcial Autistic community. We

are we to go?

>

> Please do not condemn Cyndi for having the guts to go into the

public arena and invite you all in to see what life is like for many

of us. Give her the support and commendations she deserves for

seeking help anywhere it can come from.

>

March 25, 2008

I emailed it to my ds online group.... I read your daughter's poem and it is so

beautiful. I used to write when I was much younger.....

Re: This is the post I made on Dr. Phil's board!