Oftentimes, when babies are born with Down syndrome, the doctors profusely apologize to the parents, saying that they’re sorry for their loss. Parents are given dark outlooks on the future and kids are looked down upon. Despite the significant challenges that kids with down syndrome face, there are also positives and the opportunity to live a productive and fulfilling life.
Down syndrome is a genetic condition caused by a third 21st chromosome. The additional genetic material causes alterations to intellectual and physical development. Some of the common features of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a crease down the palm. People with Down syndrome may also need heart or spinal surgeries and may face hearing or vision loss. The name Down syndrome comes from a physician, John Down, who in 1866 described the condition as a distinct entity. However, it wasn’t until 1959 when Down syndrome was identified as a chromosomal condition.
In addition to the physical challenges, there are also intellectual and developmental differences in people with Down syndrome. All people with Down syndrome will have some degree of intellectual disability; however, the disability widely ranges in severity. Early intervention is critical in catching up on development, as there are often setbacks in speech and motor abilities. Additionally, most children with Down syndrome in the US will be placed in Special Education due to the variety of support they may need. Physical, occupational, and speech therapies are all critical in supporting development. Many adults with down syndrome are able to live semi-independently in community homes and hold down stable jobs.
Most people with Down syndrome prefer person-first language, meaning that you describe them as an individual/person/child with Down syndrome, rather than Down syndrome child or Down’s kid. It’s also important to stay away from phrases like “struggles with” or “abnormal.”
The cause of the extra chromosome is unknown. Maternal age is one factor that has been linked to the condition, however, there are still many women under the age of 35 who have a child with down syndrome. The additional copy can originate from the mother or the father; however, 95% of the cases are linked with the mother. Additionally, only 1% of Down syndrome cases are hereditary, meaning that just because a parent has one baby with Down syndrome, does not mean their next will have the condition. It’s estimated that Down syndrome occurs in about 1 in every 700 babies.
I appreciate your approach to this topic. I am heavily involved in the Down syndrome community. For the past few years I have been a volunteer for an organization called PALS. Every summer I am a counselor at a sleep away camp for adults with Down syndrome. One of the projects that we have the campers do is participate in something called the Congratulations Project. Like you said, often times people apologize for the diagnosis of their child, but the Congratulations Project alters this perspective. Every camper writes a letter that starts “Dear Parent, Congratulations on your new baby. My name is (name) and I am a camper at camp PALs. I love my life because…” and there are no limits or guidelines after this intro. Most of them write stuff like because I love my mom or because I like to cook. The goal is to show these new parents with a baby with Down syndrome on the way that they can be proud and happy to bring them into the world instead of constantly hearing “I’m sorry”. Most parents who receive the letter are moved by the words our campers share. I recommend you check it out; it’s impossible not to cry when you read these letters.
I have quite a few friends with Down Syndrome that I met through a club in high school. They are each inspiring individuals with their own hopes and dreams and futures ahead of them. I agree that it is unprofessional and discouraging when doctors apologize to parents when they discover that their child has Down Syndrome. While they will have disabilities, children with Down Syndrome also have so many wonderful abilities, just like every child and adult. It is our duty as a society to recognize that.
I liked the way you explained what down syndrome is in a very respectful manner. After being in our best buddies program in high school, I have realized that those with down syndrome are the best people I have ever met. They truly inspired me in their constant positive attitude and outlook on life. I think it is sad that some people may feel sorry for parents who have a down syndrome child, but little do they know they are some of the most extraordinary people on the planet.