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An innovative path for reaching kids with Down syndrome

August 29, 10:55 PMHealth ExaminerAngela Spears
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Jim with his son Logan and Landon at the Little Gym

 Last July, I was looking for a summer activity that would channel the energies of my hyperactive four-year-old son in a productive manner. I stumbled upon a local franchise of the Little Gym; a nationwide development gymnastics program that is non-competitive and designed to build motor skills, fostering enhanced emotional, intellectual and social skills. My husband and I had spent a good deal of time looking for a program or school that would respond to our son’s needs. It was an instant hit with our son. 

But why was this place so different and successful with children, especially those with special needs? 

The secret was not just the concept; a progressive motor skills program but the personal commitment and nurturing approach demonstrated by the owners and staff. Jim a former exec in the corporate world in IT and then as a software trainer at one of the Big 6 accounting firms and his wife Paige a veterinary technician and business owner learned their son Logan, born in 2005 had Down syndrome.

"We knew very little about this, but soon learned that low muscle tone affects many children with Down syndrome. We went through physical therapy (fine and gross motor), occupational therapy, you name it, we were doing it. When we moved to Brentwood, CA we realized how valuable a developmental gymnastics program would be, not only to Logan, but for all children in developing their physical, emotional, perceptual, social, and mental skills," said Jim.

The announcement that Republican vice presidential candidate – Alaska Governor Sarah Palin – has a son diagnosed with Down syndrome hit home for Jim and Paige. "I do hope this will generate more public awareness about the condition and shed some light on the special challenges we face, but  also know we feel very fortunate and blessed to have our son," said Paige.

Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies. The physical features and medical problems associated with Down syndrome can vary widely from child to child. While some kids with DS need a lot of medical attention, others lead healthy lives. Though Down syndrome can't be prevented, it can be detected before a child is born. The health problems that can go along with DS can be treated, and there are many resources within communities to help kids and their families who are living with the condition.  

According to the National Association for Down syndrome two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.

At this time the most commonly used screening test is "The Triple Screen." This is a combination of three tests that measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks of gestation.  Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome.  Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur. 

Three diagnostic tests are currently available:

  • Amniocentesis is performed between 12 and 20 weeks gestation
  • Chorionic Villus Sampling (CVS) is conducted between 8 and 12 weeks
  • Percutaneous Umbilical Blood Sampling (PUBS) is performed after 20 weeks

The National Association for Down syndrome offers many programs to support parents and families. To learn more visit: http://www.nads.org/pages_new/programs.html

 

 

 

 

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