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Getting support
The Down Syndrome Association of Northeast Indiana began as a support group for families of people of all ages affected by Down syndrome. It offers information and support to affected families and professionals and promotes awareness and acceptance of individuals with Down syndrome in the community.
Here’s a sampling of DSANI offerings:
•Informational packets for new parents and those who have received a prenatal diagnosis for Down syndrome
•Networking opportunities for parents
•Friendship groups for children and adults with Down syndrome
•A library of materials on Down syndrome
•Speakers on topics related to Down syndrome
For more information on the Fort Wayne-based organization, visit www.dsani.org, or call 471-9964.
Beth Price doesn’t downplay the anxiety and uncertainty of having a child diagnosed with Down syndrome.

Bearing ‘Gifts'

Moms upbeat in Down syndrome book

Photos by Dean Musser Jr./The Journal Gazette
Jude Price, a 2-year-old with Down syndrome, reacts to the camera. Jude works with therapists on motor skills and speech.
Markle resident Beth Price, Jude’s mother, contributed to a book titled “Gifts” that details experiences raising children with Down syndrome.

First he shook maracas as he paraded around the living room.

Then it was the toy drum kit that set Jude’s musical imaginations alight. Eventually, the 2-year-old took to pushing his twin brother, Simon, around the room in a red Radio Flyer wagon.

Finally, if only for a moment, he settled in on the couch next to his dad, Steve Price, who was watching tennis on TV. Simon bounced up and down beside them, shifting Jude’s 23-pound body with each bounce.

Beth Price watched her twins’ zig-zagging movements, smiling at intermittent interruptions for show and tell.

Shortly after Jude was born, she was already thinking of comebacks to bullies’ insults. They were for Simon, who she imagined might be made fun of because of the disability of his brother. She wonders some about how differences in their development will affect Simon and Jude, who has Down syndrome.

“I think it will probably get a little more complicated as they get older,” Beth Price said.

In many ways, raising Jude is like raising any of their children, say the Prices, who have two other children, Jacob, 14, and Chloe, 10. (The Prices lost their son Seth, who drowned in 2000.) There are challenges and rewards just the same.

“I wish that I had known when Jude was born all that I know now about the bright future that is within reach for him,” Beth Price writes in a book titled “Gifts.”

The Markle resident is one of 60-plus contributing authors to the book, a compilation of mothers’ stories reflecting on raising children with Down syndrome. Published by Woodbine House this spring and now in its second printing, “Gifts” is meant to go beyond clinical warning labels to detail enriching experiences of mothers with children who have Down syndrome.

Its release follows a recommendation by the American College of Obstetricians and Gynecologists in January that all pregnant women – not just those 35 and older – be offered screening for Down syndrome.

About 90 percent of pregnant women receiving a prenatal diagnosis of Down syndrome have an abortion, according to a 1999 report. (Many who don’t consider abortion an option forgo screening for Down syndrome.)

Kathryn Lynard Soper, the editor of “Gifts,” says she’s not opposed to screening for Down syndrome. But she sees a disconnect between the high rate of abortions for women who receive a prenatal diagnosis and the positive experiences of most parents of children with Down syndrome.

“You wonder what’s happening in between,” said Soper, a mother of seven, including her youngest, Thomas, who was diagnosed with Down syndrome at birth. She says doctors need to take care to present balanced, comprehensive information to pregnant patients.

Soper and other “Gifts” contributors, who include abortion-rights opponents and supporters, believe that expectant mothers would be much less likely to have abortions if they had a fuller picture of life raising a child with Down syndrome. But many pregnant women and new moms never receive such nuanced, in-depth information on the subject.

Mothers of children with Down syndrome diagnosed prenatally reported that doctors did not tell them about the positive potential of people with Down syndrome, according to a 2005 Harvard study, the most comprehensive on the subject. Nor did the women surveyed believe they received enough up-to-date information or contact information for parent support groups, the study said.

What’s more, those surveyed said they received incomplete information at an emotional time while they were deciding whether or not to continue their pregnancies.

“We wanted to show the world that the life of a child with Down syndrome is something to celebrate,” Soper said.

Beth Price’s account – like others in “Gifts” – doesn’t downplay the anxiety and uncertainty she felt when Jude was first diagnosed with Down syndrome.

“My first fears were for my relationship with Steve,” she writes. “The responsibility of parenthood is daunting under any circumstances, but would we be able to rise to the occasion of raising a child with a disability.”

But Price’s candid storytelling doesn’t stop there. She goes on to revel in the details of bringing up young boys. Reflecting on the Fourth of July 2006, Price predicts that both the twins will be asleep before any fireworks light the sky.

“They will no doubt be worn out from a day of toddler mischief – climbing on stuff they shouldn’t, pulling books off shelves, throwing food from their trays,” she writes.

Although all parenting is fraught with challenges, Beth Price says her worries about raising a child with Down syndrome are much diminished from when Jude was first diagnosed. The Prices say it’s important for parents of children with Down syndrome to connect with other parents in the same boat. Such networking has helped alleviate many concerns and answer many questions for the couple.

As for special needs, Jude works with therapists motor skills and speech. But beyond an underacting thyroid, he’s been healthy – the family’s healthiest child so far, Beth Price said.

The Prices say they’ve been lucky in that regard.

About 40 percent of children with Down syndrome have congenital heart defects, according to the National Association for Down Syndrome. That’s in addition to a higher incidence of infection, respiratory, vision and hearing problems, and thyroid conditions. Life expectancy is shorter, although most people with Down syndrome live to age 55 or beyond.

Most noticeably, for the outside world looking in, the genetic condition slows physical and intellectual development.

The institutions of years past have given way to integration into mainstream education. As with proper medical care leading to healthier lives, personal attention and instruction have opened up new horizons for children and adults with Down syndrome. By the same token, people with Down syndrome face challenges that are unique to their counterparts, and are uniquely shaped as a result.

So it goes with Simon and Jude. Simon walked earlier, is about 10 pounds heavier and a head taller, and is quicker to learn language.

But play time is still play time.

The “developmental differences between them are noticeable, but do not keep them from being partners in crime,” Price writes in “Gifts.” “They are both sticky-fingered imps, typical little boys.”

mschroeder@jg.net

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