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Fatherly support

Dads help their children deal with?Down syndrome

June 19, 2011
By RODNEY MINOR , The Leader Herald

For Jim?Swart, raising a child with special needs has taught him how to be a better dad. The disability made him focus on what mattered most in life.

"Some things are more important than the ball game on?TV or playing golf," he said with a laugh.

When it comes to raising their daughter, Madison, Swart said he and his family treat her like the 13-year old she is despite the fact she has Down syndrome.

Article Photos

Jim Swart receives a hug from his daughter Madison outside their home in
Johnstown on Thursday.
The Leader-Herald/Bill Trojan

"We keep [Madison's disability] in the back of our minds, but we treat her like a teenager," he said.

Swart, 46, said he and his wife, Veronica, got a lot of help from people in the Capital Region about how to handle Madison's disability after she was born.

Swart said he hopes The Dad's Place he developed at his job at Parent to Parent of New York State can provide other men with the same type of support he and his family received.

"We got a lot of help from other people, a lot of good people," he said.

Swart said when Madison was born in 1998 and diagnosed with Down syndrome, it made him wonder what her future would be like.

Before the diagnosis, Swart said, like any parent he had goals and dreams he hoped to see Madison achieve. Also, he said, he felt he had an idea of what to do to help her reach those goals.

The diagnosis of Down syndrome changed everything, Swart said.

Down syndrome slows mental and physical development, and people with it usually show mild to moderate disability in intellect and skills for everyday living.

The first family the Swarts went to visit to learn more about raising a child with Down syndrome was a local one.

Lisa and Scott McCoy of Johnstown have a daughter, Kelsey, with Down syndrome.

Scott said Kelsey, now 17, can do some things on her own and sometimes needs help with others, such as getting dressed properly or tying her shoes.

"She loves swimming in the pool, but we have to keep an eye on her," Scott said.

Swart recalled watching Kelsey play in the pool. Watching her play made him realize that many aspects of life would still be open to Madison.

"It helped me visualize the potential [Madison] had," Swart said, also noting Madison now loves the playing in the water.]

A videotape from the Down Syndrome Aim High Resource Center in Albany also was helpful, Swart said.

Of course it took him a long time to watch it. Swart said he put it off, concerned it would focus on things Madison would not be able to do.

When Swart finally worked up the nerve to watch it, he said, he was relieved to find it was the opposite: focusing on positive images for her future.

"It made me realize [Madison] can do a lot of things," Swart said.

Part of being the father of a handicapped child meant having to learn how to plan ahead for daily activities, Swart said.

Even something as simple as getting ready to catch a school bus requires some thought, he said. Cassandra, 16, Madison's older sister - who is not disabled - can be ready to leave much quicker than Madison can, Swart said.

Madison just takes a little longer to process information, he said. That put the responsibility on Swart to learn how long it takes Madison to get ready.

"It didn't come right away [for me]," Swart said, about learning how quickly Madison processes information. "It is still a learning process."

Scott said helping Kelsey also has made him a better father to Kelsey's twin brother and her younger sister, neither of who are disabled. The close supervision Kelsey can require has carried over to the other two, who understand their parents want and expect to know where they are, Scott said.

"They know and expect that," he said.

Scott said he would advise any parent with a newborn who has Down syndrome that it is a life changing experience. While there can be challenges, he noted Kelsey is not the average teenager - she is smiling all the time and doesn't talk back.

"There are some struggles," Scott said. "But it helps to see the smile on her face for 15 hours a day, seven days a week."

Swart, the regional coordinator at the Capital District office of Parent to Parent of New York State, said when he started at the job about 3 years ago, he also started working on putting together The Dads' Place.

The group provides fathers of children with developmental disabilities or special health care needs the chance to support one another, he said.

For men, that can be particularly important, Swart said, because a dad's perspective on a disability tends to be different than a mom's.

For example, men tend to keep their own thoughts and feelings about having a child with special needs to themselves.

"It takes a lot longer for men to come through and accept the disability, realize it is not what they had planned, but their child can still be as capable with some help," Swart said.

Women, in contrast, are more likely to seek out other women dealing with the same issues and get support.

The group meets every month at a restaurant on Wolf Road in Albany. In addition to having food and conversation, sometimes there are presentations planned on topics members see a need to learn more about, such as bullying or financial planning for their child's future.

For more information about the group, call Swart at 381-4350, Ext. 26 or e-mail him at JMSwart1@verizon.net

 
 

 

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