Down syndrome is a fairly common condition caused by an extra 21st chromosome. Typically people only have two copies of each chromosome (one inherited from each parent), but in Down syndrome, something happened at conception that caused the baby to develop with three copies instead of one. This is why Down syndrome is also known as Trisomy 21. It is currently thought that it effects 1 in 733 births today, and there are well over 300,000 people in the United States and over 500,000 people in Europe living with Down syndrome. It is the most common cause of mental retardation.
When a child with Down sydrome is born, it is important for parents to seek out resources to help them along this difficult, but amazing journey.
The Down Syndrome Association of Middle Tennessee provides resources for families living with Down syndrome such as up to date information on Down syndrome, advocacy, family support groups, and social activities.
The Down Syndrome Clinic at the Children’s Hospital at Vanderbilt offers comprehensive care to children living with Down syndrome that incudes genetics, nutrition, speech therapy, occupational therapy, physical therapy, feeding therapy, cardiology, and much more. Parents drive from all over the South just to have their child seen at Vanderbilt. Be prepared to stay for most of the day since they use a multidisciplinary approach to appointments. Within your scheduled appointment you may see many specialists so that you do not have to take several trips to Vanderbilt. Be sure to pack a bag with things to entertain your child along with several snacks.
The Down Syndrome Clinic is an affiliate of the Kennedy Center at Vanderbilt, which provides services for a number of different disabilities. They area also involved in research and will frequently do studies about Down syndrome in which families can participate. For example, they recently had a parent stress intervention project that taught parents how to cope with the stress that comes along with having a child with special needs. They also did a brain imaging study on adults with Down syndrome. Check their website frequently if you are interested in participating in any type of research for Down syndrome.
If your child is under the age of three, you might be referred to the Tennessee Early Intervention System or TEIS. Through this state run program, your child can receive services such as speech, occupational therapy, physical therapy, and an early intervention teacher.
The Arc of Davidson County provides free services for those living with developmental and intellectual disabilities in the Middle Tennessee Area. They have a family support program, which is a state funded grant that provides financial support for families who have a member with a disability. They also have advocates who can help families who feel as though they are not receiving the services that their child needs in the school system.
The best resource for families living with Down syndrome will be other families. Try to find other parents in the community if you can. If you see a family out and about in public, do not be afraid to try to go up and talk to them. Most families who have a child with Down syndrome are very open and are willing to help other parents. Just having the support of another person who knows what you are going through can be the most valuable resource of all.