Down syndrome 101
- Down syndrome is the most commonly-occurring genetic disorder. Down syndrome is NOT a disease. People with Down syndrome usually have mild to moderate cognitive impairment, low muscle tone, smaller stature, and a slightly flattened facial profile. As is true of all people, individuals with Down syndrome have their own strengths, weaknesses, interests, and aversions. They are capable of breaking expectations and succeeding in a multitude of ways.
- Down syndrome is a genetic condition, resulting when a baby is born with three, rather than the usual two, copies of chromosome 21. Because there are three copies of chromosome 21, Down syndrome is also called trisomy 21. With the third 21st chromosome existing in every cell, it is not surprising to find that every system in the body is affected in some way,although not every person with Down syndrome has the same associated conditions.
- Down syndrome occurs once in every 691 live births and over 375,000 people in the United States have Down syndrome.
- While the age of the mother can be a factor, 80% of children with Down syndrome are born to parents under the age of 35 (the average age is 26).
- While there are guidelines regarding physical and cognitive development, it is impossible to predict the future of a child with Down syndrome, just as it is impossible to do so for any other child.
- Some of the medical conditions associated with Down syndrome may include:
- 40 to 60% of all infants with Down syndrome have some type of heart defect.
- Hypotonia (low muscle tone) is another common feature, which is the cause of not only delayed gross motor development like crawling and walking, but also constipation and gastroesophageal reflux.
- The prevalence of autism or autistic spectrum disorders is estimated to be between 5 and 7%.
- People with Down syndrome are active participants in the community; schools, jobs, and leisure activities. Some live with family, some with friends, and some independently.
- At the beginning of the 20th century, there were close to 100,000 children in institutions, many of whom were children with Down syndrome. Their existence was dismal, at best, and life expectancy was just nine years. The gains made in the last third of the century in education, employment, and community living have been significant but must be broadened even further. The new century offers the possibility of unparalleled opportunities for individuals with Down syndrome. Life expectancy for a baby born today with Down syndrome is 60 years.
- This is the first generation of individuals with Down syndrome to age. Many healthcare professionals are just beginning to understand what is “normal” aging and what may be certain conditions specific to Down syndrome that help or impede a healthy aging process. For example, there has been a tendency to over-diagnose Alzheimer’s disease in those with Down syndrome because there is a close connection.
- Despite the research, the facts, figures, studies, and advances, what remains true is that people with Down syndrome want to be accepted. They want to be included. They wish to be provided with choices and opportunities. People with Down syndrome have goals and dreams. They want to be heard and given the same respect as everyone else. Individuals with Down syndrome are thinking and feeling people, and they want to be treated as such. They want the same quality of life as everyone else.
- In the USA, the condition is referred to as Down syndrome, not Down Syndrome or Down’s syndrome. Individuals with Down syndrome are people first. They are not identified by their condition. For this reason, we encourage the use of person-first language in referring to individuals with Down syndrome. A person with Down syndrome is exactly that: a person with Down syndrome. A person with Down syndrome is NOT a “Downs person” or a “Downs child”. We say that a person HAS Down syndrome – we never say that a person “suffers from” Down syndrome and we never say that a person IS Down syndrome
GUIDELINES FOR OFFERING SUPPORT TO NEW PARENTS:
Not everyone has experience with Down syndrome. A grandparent or a friend might not know how to react to the news. In general, the best course of action is to treat the new baby as you would any other. Pick up the baby, fuss over the baby, play with the baby. Sometimes you may not know the right thing to say, or worry what you say is in fact the wrong thing. We would like to give some suggestions about what not to say and what to say. The following suggestions are based upon the input of many parents of children with Down syndrome.
THINGS NOT TO SAY – These are the things that parents have said really upset or angered them:
- “I’m sorry” or any form of pity. Pity is not what new parents want or need. What they need is love and acceptance of their new baby.
- “God gives special parents special children” or any variation. The new parents probably don’t feel very special right now. Also, some parents may be a little mad at God – or they may not believe in God. Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this.
- “They’re such loving children.” This is a stereotype of people with Down syndrome and a statement like this demonstrates that you really don’t know much about Down syndrome.
- “Do they know how serious it is?” or any variation. This is also a demonstration of a lack of knowledge about Down syndrome.
- “You are handling this better than I could.” This is an invitation for the new parents to say something like, “No, you would be wonderful.” Suddenly, the conversation has switched to you instead of the parents and their new baby.
THINGS TO SAY – These are the things parents have found comforting or made them feel good:
- “Congratulations.” They just had a baby! What better response to show that you love them and their baby than to say congratulations. Parents tell us that this makes them feel like “normal” parents when someone said this to them. If the hospital allows it, a bottle of champagne could be greatly appreciated. Simply put, treat the birth with the same joy, acceptance, and celebration as you would any other.
- “He/She looks just like you.” The baby probably does look like someone in the family. All of the baby’s genes are from the family. This reinforces the family connection and, is after all, a statement often heard at the birth of a child.
- Tell them what you have learned from the RMDSA website and share the resources you’ve identified. It shows love and concern for the baby and demonstrates your desire to be informed and involved.
- Offer to babysit. It is a fear of the new parents that their family will not accept the new baby. By saying something like, “Well, when are you going to let me babysit?” you are showing the new parents that you want to be part of the baby’s life. This will be a great relief to them.
- “He/She will do fine.” The new parents are probably pretty worried. They might not know much about Down syndrome and they may be concerned about possible medical issues. Having a positive attitude will rub off on them. They don’t need pessimism or negativity from their loved ones.
- “We’ll all learn from him/her.” This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled.
- “We will always be here to help.” Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives.