Tuesday, December 9, 2008

Down syndrome

21 things I have learned about Down syndrome:

1. Down syndrome is a genetic condition. 95 percent of people with Down syndrome, like Polly, have Trisomy 21.

2. People with Trisomy 21 have 47 Chromosomes instead of 46 in each cell. This is because of an error in cell division called nondisjunction. At some point, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, an extra chromosome is copied in every cell of the body.

3. It occurs once in every 733 live births.

4. John Langdon Down, an English physician, named the anamoly “Down syndrome” in 1866.

5. More than 350,000 people in the U.S. have this genetic condition.

6. Individuals with Down syndrome, and their families, prefer “people first” language when referring to them. They are individuals who have Down syndrome. Babies with Down syndrome are not down’s babies.

7. Most people with Down syndrome fall into the mild to moderate range of mental impairment.

8. Several health complications could occur in individuals with Down syndrome. Some include heart defects, low muscle tone, thyroid disease, and vision and hearing problems. However, most of these conditions, when treated, do not get in the way of people living full lives.

9. Down syndrome affects people of all ages, races and economic levels.

10. People who have Down syndrome are active participants educationally, vocationally, socially and recreationally.

11. Polly is not always happy, although that is a generalization that people make about individuals with Down syndrome. She absolutely can be happy. She also gets mad, grumpy, tired, selfish, and frustrated, just like the rest of us.

12. Individuals with Down syndrome are more like you, than different.

13. Most little ones, from birth to age three, take advantage of early intervention therapies, like physical therapy, occupational therapy, speech therapy and developmental therapy.

14. Years ago, people with Down syndrome were usually institutionalized, with the assumption that they were unable to learn. That assumption has been proved inaccurate.

15. Quite a few people with Down syndrome are ultra-flexible.

16. Down syndrome is not a death sentence for the individual, nor for the family.

17. All the chromosonal material in individuals of people who have Down syndrome is normal. There is just more of it.

18. Many children with Down syndrome are in included now in typical classrooms throughout the U.S.

19. People with Down syndrome are not all the same. They are individuals with individual strengths, weaknesses, desires and struggles.

20. The diagnosis at first is based on physical characteristics that are usually seen in babies with Down syndrome. Things like: low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. Then a blood sample is taken to confirm or disprove the suspicion.

21. I am thankful for my two daughters with Down syndrome.

Some helpful links about Down syndrome:

National Association for Down Syndrome
Downsyn(a wonderful network of parents for kids with DS)
Reece's Rainbow (International Down syndrome Orphan Ministry)

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