Fw: Arc and Father Learns from Daughter with Down Syndrome

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FYI

Good story.

Ellen

Ellen Garber Bronfeld

egskb@...

Arc and Father Learns from Daughter with Down Syndrome

The Arc of Illinois

June 9, 2011

Leaders in The Arc:

Great story below.

is a member of The Arc and our Family Support Network Committee.

Tony auski

The Arc of Illinois

815-464-1832

Source: Wilmette Beacon

Wilmette man learns from daughter with Down syndrome

Crawford helps raise awareness with national association

by Alan P. Henry

http://www.wilmettebeacon.com/Articles-c-2011-06-08-222818.114133-Wilmette-man-l\

earns-from-daughter-with-Down-syndrome.html

There was a time, not that many decades ago, when parents who had just

given birth to a baby with Down syndrome would be asked at the hospital whether

they wanted to consider permanently institutionalizing the baby right away

rather than take it home.

The National Association for Down Syndrome was founded in Chicago in 1961

by parents who chose to go against medical advice and raised their children with

Down syndrome at home. The association supports families, educates medical

professionals about Down syndrome, and advocates on behalf of the Adult Down

Syndrome Center at Lutheran.

Helping the organization raise awareness and change attitudes has been

Crawford, of Wilmette, who now serves as first vice president on the

association's board.

Crawford understands the importance of the association because his family

has been the direct beneficiary of its services.

Five years ago, his wife Elise gave birth at ton Hospital to Katia,

who has Down syndrome. Immediately, a hospital staff member gave the couple

information about The National Association for Down Syndrome.

Shortly thereafter, a parent support couple involved with the organization

who has a child with Down syndrome came to the Crawfords' home to help them

understand some of what lay ahead.

" I realize how fortunate we were and how important it was to have had that

experience, " Crawford said.

He quickly learned that some parents in other areas are not so fortunate,

and are given outdated or misleading information about Down syndrome, which

helped motivate Crawford to get involved.

" A lot of times, people's first exposure to learning about Down syndrome

is a nightmare, " Crawford said. " It's not as bad now as it used to be, but it is

still met with a lot of not so positive information. "

Education programs for hospital doctors and nurses have been particularly

successful and are at the core of the association's mission, said Crawford. It

also offers direct support to families through a parent support program,

mentoring program, work experience program and other individualized services

aimed at ensuring that all persons with Down syndrome have the opportunity to

achieve their potential in all aspects of community life.

Crawford, 43, and Elise met as undergrads at Notre Dame, have been married

19 years and have lived in Wilmette since 2002.

She is an attorney with the Transportation Security Administration in

Chicago. He is director of disaster services at Feeding America. In addition to

Katia, they have two sons , 11, and Aiden, 7.

Crawford has nothing but praise for the services offered to children with

Down syndrome by the Wilmette schools and park district.

" I had no idea when we moved to Wilmette that people actually move here

specifically because the schools are known to be very supportive of children

with special needs, " Crawford said.

Katia has been enrolled in a pre-school at Romona School for children with

special needs.

" They have an unbelievable team of teachers there, " Crawford said.

She will be entering kindergarten at McKenzie School in the fall.

Crawford has been particularly impressed by the level of acceptance of

children with special needs that he has seen in classes attended by , who is

now at Highcrest.

" The kids have a much more mature way of dealing with people with

disabilities than I would have ever imagined of kids their age, " Crawford said.

" It is beyond tolerance. It is actual inclusion. "

Katia has taken swimming, gymnastics and dance classes at the Wilmette

Park District, with the help of the Northern Suburban Special Recreation

Association.

A happy, outgoing child, Katia will be in a Tiny Tots program this summer

and plans to try her hand at soccer this fall.

Crawford fully understands that while early intervention programs and

local recreational and school programs are all working well for his family, the

road gets rougher once a child with Down syndrome becomes an adult.

As Crawford knows, Illinois " is at the bottom of the heap " when it comes

to funding and support for independent living and work programs, in part because

the state commits so many resources to large institutions, some of which date

back to the Civil War.

Crawford is hoping to help boost the government relations arm of the

National Association for Down Syndrome in a long-range attempt to get the State

Legislature to better understand the negative personal and cost-inefficient

consequences of its focus on institutionalization.

The association's board includes several members who are " self advocates, "

meaning they have Down syndrome, and their successes living and working

independently as adults have been uplifting and educational to Crawford.

But Crawford is quick to say that no one has taught him more than his own

daughter Katia.

" We all want the best for our children, but sometimes it gets out of

whack, " he said. " Parents living vicariously through their kids. Their

self-worth getting wrapped up in their kid's ability to win the spelling bee or

be on the travel team.

" Having Katia around grounds me to the point that we want our kids to be

happy and be able to pursue the things that they are most interested in to the

extent that they can, whatever that means. "

For more information on the National Association for Down Syndrome,

contact www.nads.org.

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