How Parents can Prepare for a Child with Down Syndrome

How Parents can Prepare for a Child with Down Syndrome - Have you just found out that you are going to have a baby with Down syndrome? While your baby with Down syndrome will most certainly have challenges that other children do not have, and while you will have some adjusting to do, Down syndrome, of all the developmental disabilities a child can have, is relatively manageable. Having worked with children with various developmental delays and disabilities, my personal experience has taught me that children with Down syndrome tend to be adored by other children and the adults in their lives because of their generally friendly, social nature and attitude.

The other schoolchildren in our elementary school, the "developmentally normal" children (if such a thing can ever be precisely defined for a child), were all in love with our special needs tots - but none more than three year old Bill, a tiny little boy with Down syndrome whom we always joked was the most popular kid in the school. Whenever you walked down the hallway with Bill, you would have to make three or four stops as he said hello to everyone he met, child or adult.

Our little Down syndrome man was not unusual; in every special needs classroom I have worked in or volunteered in, Down syndrome children tend to be the leaders and the diplomats; the children who try to make other children feel welcomed and who rarely have any unkind words for anyone (even when they are being characteristically stubborn).

Below you'll find a few facts and resources to help you in your new journey of having a baby with Down syndrome. And by the way - congratulations on the wonderful new addition to your family!

1. When you find out you are going to have a baby with Down syndrome, going through a grieving process is a normal stage which will not last forever.

As one mom of an eighteen year old with Down syndrome puts it: "When I meet a new parent of a child with Down syndrome, I like to assure them that the way they feel today IS NOT the way they will feel in days to come. Today I feel blessed to be able to see the world through Matthews's eyes, eyes that only know love. I believe that if we all had a child with Down syndrome, the world would be a better place." (Source: National Association for Down Syndrome)

2. The more you treat your Down syndrome child as "different", the more different he or she will be.

Working with special needs children has given me a unique perspective on developmental disabilities. As a teacher of special needs kids, part of your job is to bring out their fullest potential. In so doing, you learn not to assume "He can't do that - he's autistic" or "She doesn't understand - she has Down syndrome." The fact is, children with developmental disabilities perceive the world very differently than we do, and it takes them longer to learn how to do basic things that we take for granted, but this does not mean that they are not capable of learning and growing. The more you treat your child with Down syndrome like a normal, healthy child, the more he or she will rise to your expectation.

If, on the other hand, you treat your child with Down syndrome as if they are incapable of doing things for themselves or growing beyond a certain point, you will indeed limit his or her growth. This is one of the most common mistakes new parents of children with disabilities make. Believe in your child with Down syndrome, and they will surprise you with their capabilities.

3. Not all Down syndrome symptoms are the same - learn the difference between Down syndrome, Mosaicism, and other forms of Down syndrome.

Down syndrome results from an abnormal number of chromosomes. When a child has Mosaic Down syndrome, some of their cells have the normal number of chromosomes, while other cells have an extra copy of chromosome #21, which is the extra chromosome that causes Down syndrome. Children who have Mosaic Down syndrome have some symptoms of Down syndrome, but not all. In general, these children have higher IQs than children with "regular" Down syndrome, but this is not always the case. How Down syndrome with present itself in a child with Mosaic Down syndrome can vary widely, and there is not as much research in this field yet.

4. Like all other babies with disabilities, successful management of Down syndrome depends upon early intervention.

Try to get your child with Down syndrome started with physical, occupational, and speech therapies as early as possible. In some states, the state is required by law to offer these services through your public school district free of charge when your child turns three, so this is a good place to start, but try to get started with these therapies even earlier than three.

5. Don't be so quick to dismiss the public schools.

It seems that these days nearly everyone has a complaint about special education in public schools, with parents often describing their public school experience for their child with special needs as nightmarish. However, not all public schools are the same, and some are very good at helping children with special needs. Public school is free and filled with trained professionals, so before you assume that your child with Down syndrome will have a bad experience with the public school system and you spend a boatload of money on private therapists and private schools, investigate the school system for yourself.

6. Be aware of health issues that children with Down syndrome are more likely to have.

According to the National Association for Down Syndrome, more than 40% of children with Down syndrome suffer from congenital heart defects and other illnesses. Check with your doctor to find out if this is the case for your child.

7. Be aware that when a child with Down syndrome catches a common illness, he or she is more likely to develop serious complications.

One thing I learned from working in various special needs classrooms is that children with Down syndrome are more susceptible to getting ill (especially respiratory illnesses), and once they are ill, they are more likely to stay that way for a long time. Children with Down syndrome can get very, very sick if their respiratory illness is not well-treated.

8. However, other than leukemia and testicular cancer, people with Down syndrome are less likely to be diagnosed with cancerous growths.

According to the Centers for Disease Control, a benefit of the chromosomal disorder that causes Down syndrome is that people with Down syndrome have a "strikingly low" rate of cancers - with the two exceptions of leukemia and testicular cancer. (Source: http://www.ds-health.com/abst/a0205.htm.)

9. Children with Down syndrome will hit developmental milestones later than normal children - but they will hit them.

Things like toilet training, learning to walk, learning to talk, etc. will probably take your child with Down syndrome longer to achieve. However, with patience and persistence, your child with Down syndrome will be able to do many of the things that normal children can do.

10. The other children in your family can and will adjust to their Down syndrome sibling.

Your other children will follow your example when it comes to interacting with your Down syndrome child. If you do not feel that your child with Down syndrome is someone to be ashamed of, but is a wonderful addition to your family, your other children will follow this example.

11. Beware of falling for alluring alternative medicine treatments for your Down syndrome baby.

"While a few vocal doctors have championed the idea that dietary supplements can help children with Down syndrome, most doctors who take care of these children on a day-to-day basis do not recommend supplements. In 1996, the American College of Medical Genetics stated that it knew of no scientific evidence that treatment with Piracetam or amino acid supplements can improve the mental functioning of people with Down syndrome."- Dr. Len Leshin (Source: QucakWatch.com)

12. If you are thinking about having more children, the risk of having a second Down syndrome child is quite low.

In fact, the likelihood of having a second child with Down syndrome is only about 1%.

13. The likelihood of having a child with Down syndrome does increase with the age of the mother.

However, the occurrence of babies with Down syndrome does increase when the mother is 35 or older.

14. There are many resources available for parents of Down syndrome children.

Down syndrome affects nearly 250,000 families in the United States. As far as special needs go, it is one of the most common. For these reasons, there has been a great deal of research dedicated to Down syndrome already, and as a result there are many Down syndrome advocacy groups and other resources for parents to learn more and educate themselves about Down syndrome. Start with your family physician, or even a simple internet search, and go from there.

15. Join a support group for Down syndrome parents.

You do not have to tackle the challenges of Down syndrome by yourself. It is crucial for your child and for your family that you receive the emotional support that you need, preferably from other parents going through the same types of things. Here are a few support groups that you can consider:

Atlanta Area - http://www.ndsccenter.org/

Chicago and Surrounding Area - http://www.nads.org/pages_new/support_grps.html

Chesapeake Bay Area - http://www.cdspg.org/

For Asian Parents of Down Syndrome Children - http://health.groups.yahoo.com/group/asianparentsgroup/

List of online support groups - http://www.ds-health.com/lists.htm

Google's list of Down syndrome support groups - http://www.google.com/Top/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Support_Groups/