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Living with Down Syndrome...Shailyn's story

Sunday, September 5, 2010

(Photo)
Noreen Hyslop photo Shailyn Sandage celebrated her second birthday Saturday. Diagnosed with Down Syndrome at birth, Shailyn is a happy, healthy toddler, providing her family with much more than just the challenges of the disorder.
By NOREEN HYSLOP

Managing Editor

When Kelsey Sandage was expecting her first child four years ago, she was told by her doctor that the baby would be born with Down Syndrome. An amniocentesis performed when she was about seven months pregnant revealed that likelihood.

"I didn't know anything about Downs. I was 18 years old and scared. I researched it somewhat, but I really didn't know everything Down Syndrome involved," she recalls.

When the baby was born two months later, the family realized all their worries had been unfounded. Koghan, now four, was born without a sign of Downs. The doctor had been mistaken by a false positive test.

A year later, Kelsey gave birth to a girl she named Ryleigh. Perfectly healthy, Ryleigh is now three.

One year after Ryleigh's birth, Kelsey had her third child.

"After what happened the first time, we told the doctor we didn't want any testing done this time to determine if there was a problem," Kelsey says. "It just caused so much concern and there had been nothing to worry about."

And so, when Shailyn Blake Sandage was born on Sept. 4, 2008, Kelsey and Jordan Sandage were stunned. Their baby girl had Down Syndrome.

"We suspected it," Kelsey explains, "as soon as she was born and we saw her, and it only took about an hour for the doctor to come in and tell us."

The news initially was difficult for the parents to comprehend and to accept.

"I remember that Jordan and I said to each other, "What are we going to do? Our lives have been forever changed."

Today Jordan and Kelsey Sandage from Bloomfield agree that their lives did indeed change when their daughter, Shailyn, came along, but only for the better.

Named after John Langdon Down, the first physician to identify the syndrome, Down Syndrome is said to be the most frequent genetic cause of mild to moderate intellectual and developmental disabilities and associated medical problems. It occurs in one of about every 800 births in all races and economic groups and is described as a chromosonal disorder.

According to some experts in the field, the incidence of Down Syndrome rises with the increasing age of the mother. Many specialists recommend that women who become pregnant at age 35 or older undergo prenatal testing for the syndrome. While some reports state that the chances are one in 1,000 of a woman under 30 carrying a Down Syndrome baby, others would argue that those numbers are greater.

"We've been told," says Shailyn's father, "that 85 percent of Down Syndrome children are born to parents under the age of 35."

Another aspect of Down Syndrome that has changed over the years involves life expectancy. While years ago a Down Syndrome child was not expected to live past their teens, today it is not unusual for individuals to live well into their 60s and even their 70s.

Down Syndrome children often have some hearing loss due to the abnormal development of the bones in the middle and inner ear. Shailyn is among the fortunate, however, and does not appear to have any significant hearing loss. A test in the near future will determine if that is entirely true.

Approximately half of the number of Downs children have congenital heart disease, and Shailyn fits into this pattern.

"Shailyn was born with a hole in the middle of the four ventricles of the heart," her mother explains. "That hole closed up on its own, which is often the case, but another one now has developed and so doctors are watching that."

So far, the active little blonde-headed Shailyn has avoided surgeries. Further tests, including an echo cardiogram scheduled to take place this fall, will determine if that pattern will hold true.

Shailyn Sandage has brought nothing but energy and joy to the young family that now numbers five. As typical siblings, her older brother and sister are her protectors and her best friends. And as typical siblings, they don't always get along.

"We don't treat Shailyn any differently than we do the other children," Jordan says. "She is taught to behave just like they are. We show no difference between the three of them."

That method of upbringing has paid off well for the Sandage family, perhaps especially for Shailyn, because several factors in raising a Down Syndrome child play into the family structure.

"She can be very stubborn," Kelsey attests. "When she doesn't want to do something, she sometimes just crosses her arms and pouts and grunts, but we let her know that she has to follow rules just like everyone else."

Part of what may appear to be stubbornness, explain the Sandages, comes from the frustration of Shailyn's delayed speech development. Many of Shailyn's achievements are months ahead of typical Downs children. Typically, her expressive language is delayed by several months when compared to the "normal" two-year-old.

A visit with Shailyn reveals quickly that comprehension comes easily and speech does not.

"It's a frustrating thing," says her mother, "to know what you're trying to communicate and not be able to come across with the words."

To lessen that frustration level, Shailyn is learning to sign. Local speech therapist, Belinda Worley, works with Shailyn regularly and teaches her simple signs for various nouns, phrases, and commands. She began therapy with Worley in March and currently has about a 20-word vocabulary using signs. She is proficient at signs to indicate words like "please, thank-you, dog, cat, drink, more, hello and bye."

Some words are spoken, however. "Get it" comes out loud and clear, as does "stop" and others that are put to use daily at play.

Shailyn is a loving child, full of smiles and laughter and undaunting courage as she learns to climb and slide and these days, walk.

Walking, for a Down Syndrome child, does not come easy. At 22 pounds, Shailyn is extremely healthy, but very small for her age. As is typical of a Downs child because of the lack of muscle tone, she learned to crawl using hands and feet, with her bottom raised high in the air. It comes easy, but she is encouraged by therapists and her family to raise off the floor and use her legs to walk, which is coming more natural with each passing day.

Milestones for Shailyn are celebrated in a big way in the Sandage home. From learning to sip from a straw to learning to adjust to ankle braces to help with her stability, the sound of clapping and hoorays is commonplace within the household.

Shailyn receives not only speech therapy, but also help from an occupational therapist and a physical therapist.

"Early intervention is key," says her mother, "and we've had the most wonderful people working with Shailyn. She gets great support, and she keeps gaining ground."

So, for the Sandage family, life has indeed changed over the past two years. And as Shailyn Blake turned two on Saturday, a proud and loving family helped her blow out the candles on the second of many, many birthday cakes for their daughter.

Perhaps Kelsey Sandage sums up the family's sentiments best as she says, "If God didn't want us to have Shailyn---if He didn't think we could do this, He wouldn't have blessed us with her."


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Comments
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I think that these articles are great and very inspiring for families with special needs. I think it would be good if you would put on article in the paper with all the resources available for families with special needs.

-- Posted by apple251 on Sun, Sep 5, 2010, at 8:14 AM

That's a great idea! There are many resources including First Steps, the school system, support groups for Autism, support groups for Down Syndrome, and much more!

-- Posted by robinslp on Sun, Sep 5, 2010, at 10:53 AM

She is totally adorable & I agree, if God brings you to it, He will get you thru it,may God's blessings be with your family each & every day.I worked with grown adults with downs & other types of mental illnesses when I was a teenager & I learned much & for some reason the ones with downs interested me the most. I loved them all as much as they did me.They have so much love to share with all that they meet.

-- Posted by semoeagle1360 on Mon, Sep 6, 2010, at 12:26 PM


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