Congratulations to 9 YO Aedin Piper (article and video)

[Guest guest]

Deeds, speaking louder

Friday, March 12, 2010

By ANN GIBBONS

Freeman staff

For Aedin Piper, diagnosed at 1 1/2 years with apraxia of speech, speaking

correctly and consistently has little to do with tripping of the tongue. Apraxia

affects the entire speech process and all the muscles involved in speaking.

But, the vibrant 9-year-old found this week that apraxia could not stop her from

raising $955 as her part in The Master’s Plan, a Confraternity of Christian

Doctrine program for fourth graders at St. the Evangelist Church in

Saugerties.

As part of the program, each child receives $10, which may be used however the

child decides, to raise funds for a charity of their choosing and in memory of

someone they love who has died.

“Aedin chose to honor her great grandmother, n Brown, who died in 2008,

by raffling off a jewelry box. She remembered that Great Nana loved jewelry,â€

said Aedin’s mother, Wendi, during an interview this week. “They were very

close and Aedin misses her a great deal.â€

Wendi Piper said Aedin had a wonderful response to her project. Family members

and friends donated additional items for the raffle, including Wendi’s mother,

Brown, who baked and made gift baskets.

“And lollipops,†Aedin reminded her mother. “And lollipops,†Wendi Piper

repeated for the reporter’s benefit. “It was a very BIG idea,†she said

about her daughter’s project.

With regard to the response to Aedin’s project, Wendi Piper said everyone

rallied around her. She noted that her own mother said she had watched Aedin

struggle for years and felt helpless. “She said, for once, there was something

she could do,†Wendi Piper said.

She said she set up a fan page on Facebook for Aedin to keep everyone apprised

of her progress. On March 1, the raffle tickets were pulled � " and Aedin

learned she had increased her $10 to $995. Her charity was The Childhood Apraxia

of Speech Association of North America, which has been extremely helpful with

current information about apraxia.

“I was born with apraxia. That’s why I picked it,†Aedin said and her

mother repeated.

When asked how she felt about her project’s success, Aedin said, “I feel

good.â€

Her mother did not need to repeat that.

Wendi Piper explained that apraxia is a motor planning disorder that makes

physical movement difficult, but most profoundly affects speech. Children with

apraxia think clearly, but cannot clearly articulate their sounds so are very

hard to understand, she said.

Aedin, who is quick and bright and as mischievous as any 9-year old, continues

with speech, physical and occupational therapies several times a week. But, her

mother said, she made a quantum leap in the past year or so via an approach to

assisting persons with apraxia of speech.

Wendi Piper said she spends “hours and hours†on the Internet, looking for

ways to assist her daughter. That’s how she found PROMPT, Prompts for

Restructuring Oral Muscular Phonetic Targets, which was founded by Deborah

Hayden in the late 1970s.

“PROMPT uses a tactile approach by touching or manipulating the mouth to show

how to make the movements that produce the sound,†Wendi Piper said. She said

she and her husband, Jon, learned that a respected PROMPT therapist, Olympia

Avignon, has a second home in Greene County. On her way there, she stops at the

Piper home in Saugerties for therapy with Aedin.

“Aedin has worked so hard and has made so much progress with Olympia,†Wendi

Piper said. “She has been making sounds we have not heard before.â€

She demonstrated the process by holding a finger to her closed lips for the

“m†sound and using two fingers to push her lips into a grimace to show the

“e†sound. She said Aedin has been working “so hard†with Avignon once a

week on muscle memory.

“Some children won’t allow a therapist to touch their mouths,†said Jon

Piper. He said the success of the approach also relies on establishing a

relationship with the child.

Aedin is now home-schooled and Jon is her teacher. When asked if he were a good

teacher, Aedin grinned and said, “pretty good.†Both parents laughed.

Wendi Piper is the instruction planner, working with National Association of

Child Development on lesson plans. Every three months, the family travels to

West Chester, Pa. for an evaluation of Aedin’s progress.

“They got her reading and now she reads at grade-six level,†said a pleased

Jon Piper.

“Aedin also knows when people want to listen to her and she opens up. If not,

she shuts right down,†he said.

Wendi Piper said St. ’s CCD welcomed Aedin right from the start with open

arms. She and two other fourth-graders, White and Carly Utter, were team

mates on The Master’s Plan. A recent bake sale raised $200 for the

Mc House charity. Combined with Aedin’s $995 raffle, the three girls

raised more than $1,100 for the two charities.

“The Master’s Plan teaches children that they can take something small - $10

- and make it into something big,†said Barbara Brenner, who teaches the

fourth-grade CCD class with eight students this year. “Even though they’re

just children, they learn they can make a big difference in someone’s life.â€

Brenner said she started The Master’s Plan in 2004. Since then, the succeeding

classes have raised about $8,000 for various charities. The projects have varied

widely, and she continues to be amazed by the children’s creativity and

resourcefulness in increasing their small $10 into something much grander.

“The best part,†she said, “is that the parents get involved.

Fourth-graders can’t do these kinds of projects by themselves.â€

As for Aedin, she has another idea she’s taking to her Facebook page - a

recycling and environmental tips project. She plans to post a “green†tip or

fact on the page every day.

When asked about today’s tip, she said, “Take shorter showers.†Her mother

repeated the rest of the tip, “Turn off the faucet when you leave your

house.â€

Insurance does not pay for Aedin’s private therapy, so Wendi works full-time

at CSIG, a software development company in Kingston. Jon works 4-8 a.m. at UPS

and nights and weekends at Lowe’s.

“We have what we call the 15-minute exchange of information as we pass each

other,†Wendi Piper said with a laugh.

“What helped,†Wendi Piper said, “is that we’re both 100 percent

committed to our kids.†The couple has a younger daughter, Caelin, 5, who has

no problem understanding her older sister. “Sometimes, Caelin translates for

us,†Wendi Piper said.

Getting Aedin this far has been “quite the journey,†Wendi Piper said as Jon

nodded. “It was rough in the beginning,†he said quietly. But she said she

and Jon draw a lot of strength from their faith.

Freeman photos by Tania Barricklo

ABOVE: Jon and Aedin Piper, 9, hold up a poster for her raffle to support

apraxia causes. They made the poster together.

RIGHT: Aedin and her mother, Wendi Piper.

Aedin holds a photo of her great grandmother, n Brown, who died 1 1/2 years

ago. The two were very close and Aedin did a raffle in her honor.

http://www.dailyfreeman.com/articles/2010/03/12/life/doc4b99c557c8b2c461026599.t\

xt

Aedin we can use your help http://pursuitofresearch.org/pursuit.html

Congratulations!

(Does anyone know Aedin's parents? I have a feeling that we can help Aedin

too!)

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