Down syndrome group making an impact

By Greg Gross, Sentinel Reporter, March 7, 2010

Last updated: Monday, March 8, 2010 10:58 PM EST

In Focus

Each Monday, The Sentinel revisits a compelling person or issue covered in the past.

This week’s story revisits the Central Pennsylvania Down Syndrome Awareness Group, which was founded by local parents of children with Down syndrome.

For more information about the group, check out their Web site at www.cpadsag.org.

It began as chance encounters by total strangers and has become a group of friends that are more like family.

What the three Carlisle families have in common is that they all have a child with Down syndrome.

That spurred them to create a non-profit organization, the Central Pennsylvania Down Syndrome Awareness Group, that promotes awareness of Down syndrome, said Brian Guilliaume, a founding member and president of the group.

“I felt there was a need for this group in the community,” he said.

Guilliaume’s son, Anthony, 6, has Down syndrome.

About six years ago, Cori Guilliaume, Brian Guilliaume’s wife, met Tori Smarr while in a local store. Smarr’s son Nicholas also has Down syndrome.

In 2007, Heather Fox-Kauffman, vice president of the group, found Cori Guilliaume after reading a short story she wrote in a book called “Gifts,” which is a collection of stories written by mothers who have children with Down syndrome.

Fox-Kauffman noted that the Guilliaumes were listed as being from Carlisle and promptly looked them up in the phone book and called them.

Her adopted son Carson, 5, has Down syndrome.

That was on a Friday night, Fox-Kauffman said, and by Sunday, the two families were eating ice cream and brownies on the deck of the Guilliaume’s home.

“When we met, it was an instant connection,” she added.

Growth

Before meeting the Guilliaumes, Fox-Kauffman said she hadn’t known any other families in the area who had a child with Down syndrome.

Meeting them allowed her to ask questions that had been lingering.

“It was something we so desperately needed,” Fox-Kauffman said.

It also proved to be a friendship for both family’s children. Fox-Kauffman said the two families meet about once a week so the boys can play.

With the awareness group in its second official year as a non-profit organization, Cori Guilliaume said, it has grown by leaps and bounds.

When September rolls around, the group will sponsor its third annual Buddy Walk, a fundraising event held at Carlisle Area High School. The walk was established by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

Though there are a number of walks held around the county, there wasn’t a local one until the group got its walk started, Cori Guilliaume said.

Money raised from the walk remains local and is used to help fund the group’s events and is given out in the form of grants to families to promote the personal development of those with Down syndrome, she said.

The group also puts on family-focus nights that provides information to families with a member who has Down syndrome.

Though it’s tough to say how large the group has become, Cori Guilliaume said, attendance at events is never lacking. Over 300 people attended the 2009 Buddy Walk.

The group has even grown to include three would-be mothers whose unborn children were diagnosed with Down syndrome through prenatal screening.

Over 80 percent of fetuses that are diagnosed with Down syndrome are terminated, Cori Guilliaume said. She said the group is looking to reach out to more women who fall under that category.

Then there’s the wild side of the group.

In February, they held a belated Valentine’s Day dance and party at the community center in Giant Food Stores’ Camp Hill location.

The dance was open to anyone, Brian Guilliaume said, and was the site of at least one first date. Around 125 people attended the dance, he added.

“Everyone walked away smiling,” Brian Guilliaume said.

As for the future, Cori Guilliaume and Fox-Kauffman said the sky’s the limit.

They said they’d like to see the group to continue to grow and for it to evolve into full-time gigs for them. Fox-Kauffman said she’d like to see a facility open to work specifically with people with Down syndrome.

“We are hoping to continue to grow and hold more events with families with Down syndrome,” Cori Guilliaume said.

Training helps disabled juveniles walk

Friday, December 04, 2009

BY EMILY SHENK

For The Patriot-News

"The journey of 1,000 miles begins with the first step."

And now pediatric Down syndrome clients of UCP Central PA can embark on their life jaunt at a younger developmental age than in the past because of a physical therapy program known as pediatric treadmill training recently set in motion at the center.

"Infants with Down syndrome begin to walk, on average, about one year later than regular typically developing infants. Pediatric treadmill's stimulation results in babies who have experienced being able to walk as much as 101 days sooner than children with Down syndrome not participating in the training," said Diane Isham, staff physical therapist at UCP.

Launched this past summer at the agency's Camp Hill-based Capital Area Children's Center, the pediatric treadmill training program came to fruition by funding from the Central PA Down Syndrome Awareness Group in conjunction with an unsolicited donation made by retired state Rep. Jerry Nailor and family.

Mark Claypool and Melodie Corcoran are two of four members of the inaugural class of pediatric trekkers.

Both children aim to achieve the suggested training protocol of five eight-minute stepping sessions weekly. Their legs learn the walking motion by mimicking it on a specially sized treadmill that suspends the youngsters and allows for partial weight bearing.

They participate at the center, walking on its specially crafted therapeutic machine. The children receive assistance from a trained adult family member -- not the physical therapist -- during their sessions, allowing parents to take ownership of their child's therapies, Isham revealed.

Barry Claypool, Mark's father, also is the 18-year director of adult services at UCP. He said he has seen how parental involvement in early intervention therapies positively impacts children's growth and development and how it broadens their capabilities throughout their lives.

"Parents [of children with physical disabilities] are missing vital opportunities for their children if they don't get involved in the therapy process," he said.

Claypool said that throughout his tenure he has seen adult constituents unintentionally held back from greater community inclusion because they hadn't explored or known about therapies that could have enhanced their skills and developmental potential.

Isham and Claypool said they desire to lead more consumers to greater community inclusion.

They said they hope that programs like pediatric treadmill training can expand to serve clients with other physical disabilities and reach those in a broader geographic area.  Claypool said he wishes to accentuate his advocacy of such programs through his roles as both a consumer and leader.

After only a few months of involvement in the program, Mark and Melodie are both inching closer toward the developmental milestone of independent walking.  Their bodie are less fragile.

Melodie stands more, smiles more and is better able to play with children of her same chronological age.  Mark attempts to take side steps around the couch and has begun to reveal his humorous side.

Participants end the training as soon as they are able to take two or three steps on their own.

UCP Joins Forces with CPADSAG

Pediatric Treadmill Training Hits the MidstateUCP Joins Forces with Central PA Down Syndrome Awareness Group

"Infants with Down syndrome begin to walk, on average, about one year later than typically developing infants. Treadmill training is an evidence-based technique that ideally should be available to all families of babies with Down syndrome. The treadmill provides repeated opportunities for the child to improve balance, build strength in the legs, and stimulate the nerve connections that are involved in independent walking. This stimulation results in babies who have experienced treadmill training being able to walk as much as 101 days sooner than children not participating in the training."

That’s Diane Isham, UCP staff Physical Therapist, talking about the benefits of treadmill training. The statistic about children being able to walk up to 101 days sooner as a result of such training was all the motivation she needed to begin exploring ways to adopt this practice with her clients. Diane first became aware of the value of pediatric treadmill training in 2007 when working with Heather Fox- Kauffman and her son Carson, a baby with Down syndrome who was receiving physical therapy services from UCP. Together, Diane and Heather tried to implement the treadmill training with Carson sing a regular size treadmill. Unfortunately, his weight made it too hard to hold him suspended over the treadmill.

At that time, there was no money available or any other means of obtaining the necessary equipment—a walker with suspension system—that would make the training possible for Carson. So, with mounting frustration and great regret, the training was discontinued. At that point, Heather made it her mission to find a way to purchase the suspension system so that other children facing similar challenges would experience a different outcome.

In 2008, Heather and her husband Steve joined two other families of children with Down syndrome to form the Central PA Down Syndrome Awareness Group. A key element of the Group’s mission is to provide grants to families of (and agencies providing services to) children with Down syndrome. The funds are granted on an individual request basis to aid in promoting personal development of individuals with Down syndrome.

The group’s first such request--and the first approved-- was Diane’s request for funding to enable the purchase of a pediatric treadmill and suspension system. In approving the grant application from UCP, the Down Syndrome Awareness Group agreed to provide funding to cover the full costs of the walker/suspension system and half the costs of a pediatric treadmill machine. That still left half the cost of the treadmill to cover.

In a moment of serendipitous timing, retired PA Representative Jerry Nailor and his wife Donna sent an unsolicited donation to the UCP Foundation of Central PA. Their only request was that the funds be designated for use by childhood programs. Their donation was sufficient to cover the remaining costs of the pediatric treadmill machine.

Finally, it looked like Diane and Heather’s shared dream of bringing pediatric treadmill training to the midstate was going to become a reality for some lucky family.... That’s when Diane came up with a brainstorm: why not make plans to house the newly funded treadmill equipment at UCP’s Capital Area Children’s Center, where it would be accessible for multiple families to use?

During this time, Diane began working with Ed and Wendy Corcoran, parents of Melodie, an 18- month old girl adopted from Korea. The Corcorans were owners of an adult treadmill and were working with Diane on treadmill training with Melodie. Once again, the baby’s growing weight was becoming an issue.But this time, the outlook is much better. Thanks to the pediatric treadmill and suspension system, Melodie is able to continue her training.

The treadmill training takes place in eight one-minute increments a day, with the child eventually building up to eight minutes at a time. The remainder of the time the equipment is left idle.

Under Diane’s plan, rather than just one family being able to avail themselves of the equipment, any number of families can schedule the training at the Children’s Center at their convenience. In fact, the Corcoran family “testdrove” the new equipment for a week in August... and the results were amazing. “Using the treadmill suspension system made all the difference in our treadmill time with Melodie. Rather than becoming frustrated within a minute or two of training, she giggled nd smiled the entire time we used the system,” Wendy marveled. “Our family is so grateful to Diane Isham and all who made this innovative tool available to children in our community.” Just as exciting, it is anticipated that this service will be expanded for use by families of children with other physical disabilities, such as cerebral palsy, in the future.

Way to go Diane! Talk about fulfilling a mission... both her own and that of the agency that employs her.

For more information about the treadmill training, or to take advantage of this opportunity, please contact: Diane Isham 717-975-0611 / 800-998-4827 Email: disham@ucpcentralpa.org

2009 Buddy Walk

The 2nd Annual Carlisle Area Buddy Walk was held on Saturday, September 19, 2009 at Carlisle Area High School. [slideshow id=2]

We had an absolutely beautiful day, as 317 walkers enjoyed the day walking, meeting families and friends with Down syndrome, food, games and music. We trust that you enjoyed your day with us and that you had the opportunity to visit our silent auction, DJ Bob Foltz, the United Cerebral Palsy booth, Cumberland Goodwill Fire Company and Empire Friendship Fire Company.

The participants at the Buddy Walk raised over $13,000 to benefit the Central PA Down Syndrome Awareness Group!