Adults with Down Syndrome

[Guest guest]

Dawn,

You are asking a good question .. I guess that having a full spectrum of

older kids leads to that. Most parents don't get to adult issues until

their kids are there.

First, there is an email discussion group about teens and adults with

down syndrome. It is run under :

If you go to the website you can sign up for DS_Teens_Plus. I'm there

as are a number of other parents of adults.

All of our children are different and that holds for those with down

syndrome as well. I've a daughter who turns 30 tomorrow. Today I had a

email from her telling me she needed more money in her checking

account. I was able to go on-line and transfer money from her savings

to her checking account, so that problem is fixed.

Jan is 30 and a wonderful person. A week ago, she was skiing with her

family (a lot with me) in Utah. We skied all the intermediate slopes

and a few marked expert. She is living on her own with some support.

She has an apartment of her own and cooks and takes care of herself with

only a few hours a week of life skills help. After high school, she

attended a private program serving the " learning disabled " where she was

the first with down syndrome to complete the program. After graduation,

like most of the other graduates, she moved into an apartment in the

community near the school where she has a lot of friends, social

activities, and classes to attend when there isn't a job.

Jan is relatively recently back to the community after a couple of years

of awful illness (the last being leukemia), but at the moment she is

healthy and happy.

There is a pretty wide range of adult outcomes for people with down

syndrome. I've been watching this for years as I served as a Special

Olympics coach and particularly watched and talked to the the adults on

the bus. No, people with down syndrome are not 'eternal children',

although most of them retain some level of beautiful simplicity to their

outlook.

There are a pretty wide range of options that depend upon family

desires, the adult, and the community. These range from many who

continue to live with their parents. We'd always planned for Jan to

outlive us, so she has happily moved onto her own life and she and I

communicate a lot by email. That works well because I travel a lot.

Shared apartments, group homes, etc. work. Social programs are

available over much of the country, although it may take some work to

find them and make them work.

The vocational outlook isn't very far along and our adults are often the

last to get hired and first to get fired. Fortunately, there are

volunteer oportunities and for some there are day programs.

At this point you haven't met your new son. He will be their own

person. A very few with down syndrome never learn to talk (but almost

none are unable to cummunicate). An increasing number get a functional

education. My daughter can handle arithmetic and money, but she isn't

really ready for full independence with credit cards and taxes. She

reads very functionally, whether it is a book about someone she is

interested in or the TV guide. She hikes and skis with the family, did

gymnastics for 20 years, and swims well. She has a strong personality

and an enthusiastic outlook on life.

Financially, our kids with down syndrome are eligible for the SSI

program when they are 18 (independent of family income). This provides

about $ 500 a month. When you get to 65 and receive social security,

they become eligible for SSDI which is based upon your contributions to

social security. For Jan, that is about $ 750 per month. That comes

close to meeting her rent and personal expenses, although we do pay for

her counsellor time as she's in a private program.

I feel a tinge of jealousy. You know that your child will have down

syndrome and have a chance for some modern fact finding. We learned by

" surprise " . 30 years ago, the information available was just awful,

still we were given exactly the right advice. " She's your child and the

only option for you is to take her home. " Jan has been a wonderful

child and has enriched our lives. She has two brothers, one who is 33

and the other 28. Im proud to have such a special daughter.

By the way, I am working on a plan to climb Half Dome with her next

fall. She did it a few years ago (something of an achievement for

someone with down syndrome) and wants to do it again. We hope to use

the climb to raise money for Leukemia Society. We will undoubtedly have

a full support team of both family and friends on the three day climb.

Adults with down syndrome are nice to have around.

Rick Dill .... dad to 30 year old Jan

[Guest guest]

Rick,

I'm not either! But I have a credit card anyway and I hire someone to do my

taxes. LOL!!

B

GOD BLESS AMERICA !

My daughter can handle arithmetic and money, but she isn't

really ready for full independence with credit cards and taxes.

[Guest guest]

I got the following from Kingsley. It is link to both a NY Times

article and also an audio/video clip that you might find interesting.

Kingsley lives in a modern group home (totally unlike the group

homes we have in our minds) with two other young men with disabilities.

I think that some might find it interesting because it is a reasonable

picture of adult outcomes, at least for three guys. It is an upbeat

picture. is co-author of the book " Count Us In " which is being

reprinted in paperback this year.

http://www.nytimes.com/pages/nyregion/nyregionspecial2/index.html

You should be able to get to the audio/visual clip and to sign up to

read the article is free, so it is worth it.

Rick ... dad to Jan

[Guest guest]

That was an incredible story...and VERY well done!

As 'upbeat' as the piece is...it still brought lots of tears to my eyes!!

-Lori-

Mom to Staci 27, 24, 22, Jayda 6, Shayli 4(DS), and Sophie 2

Grandma to Kendra 7, Tyrance & Terrell (twins) 6

Adults with Down Syndrome

I got the following from Kingsley. It is link to both a NY Times

article and also an audio/video clip that you might find interesting.

Kingsley lives in a modern group home (totally unlike the group

homes we have in our minds) with two other young men with disabilities.

I think that some might find it interesting because it is a reasonable

picture of adult outcomes, at least for three guys. It is an upbeat

picture. is co-author of the book " Count Us In " which is being

reprinted in paperback this year.

http://www.nytimes.com/pages/nyregion/nyregionspecial2/index.html

You should be able to get to the audio/visual clip and to sign up to

read the article is free, so it is worth it.

Rick ... dad to Jan

[Guest guest]

In a message dated 3/11/2007 11:34:37 PM Central Standard Time,

rdill@... writes:

You should be able to get to the audio/visual clip and to sign up to

read the article is free, so it is worth it.

Rick ... dad to Jan

Thanks Rick

The article was great, I sent it to my family

Kathy mom to Sara 15

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

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[Guest guest]

Hi Rick,thanks for passing this along - may I forward it to other parents of children with DS? A friend sent me a signed copy of the book "count us in" shortly after Tristan was born and I was so encouraged by it.thanks so much,Thirza Mom to Tristan, 13, (DS, leukemia survivor), Abigail 5, Ella 3, and 4 monthsOn Mar 12, 2007, at 12:19 AM, Rick Dill wrote:I got the following from Kingsley. It is link to both a NY Times article and also an audio/video clip that you might find interesting. Kingsley lives in a modern group home (totally unlike the group homes we have in our minds) with two other young men with disabilities. I think that some might find it interesting because it is a reasonable picture of adult outcomes, at least for three guys. It is an upbeat picture. is co-author of the book "Count Us In" which is being reprinted in paperback this year.http://www.nytimes.com/pages/nyregion/nyregionspecial2/index.htmlYou should be able to get to the audio/visual clip and to sign up to read the article is free, so it is worth it.Rick ... dad to Jan

[Guest guest]

Between Rick's and Angie's forwards today I feel extra wonderful about our kids

tonight. What great press! What great kids/adults!

I loved Kingley's line, " My life would be so impoverished without (our

kids) . " Isn't that the truth!

Jackie, Mom to 19ds, 16, and Bradley 13

-------------- Original message --------------

From: b4alltoday@...

In a message dated 3/11/2007 11:34:37 PM Central Standard Time,

rdill@... writes:

You should be able to get to the audio/visual clip and to sign up to

read the article is free, so it is worth it.

Rick ... dad to Jan

Thanks Rick

The article was great, I sent it to my family

Kathy mom to Sara 15

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.