October is Down Syndrome Awareness Month. My goal is to educate others on what life has to offer when you are blessed with a child that carries this extra chromosome. Our journey began a little over 11 years ago. I was told over the phone that my prenatal testing showed a high probability for Down Syndrome and I was, of course, given the option to terminate like every other mother who receives this prenatal diagnosis.
For me personally, abortion was not an option. I was, of course, afraid. I was afraid I would not be enough for her, to properly meet all of her needs. Through this journey I have realized, that I am enough. There are have ups and downs, but overall, Chloe is just like any other child. I have six children total and have dealt with ADHD, OCD, health problems, the teenage years, and honestly can say that Down Syndrome is not a big deal. When you can look past the diagnosis and see your child as a child, the rest just falls into place.
Down Syndrome occurs when an extra chromosome shows up on the 21st pair. Even though there are three forms, Trisomy 21, is the most common. The extra chromosome is responsible for the facial features and short stature. Outdated ideas and misinformation still lead doctors to have a grim outlook on our children’s future.
I am part of several support groups and find it astonishing that mothers are still told their children with not walk, talk, read or function like other children. Down syndrome babies are not the only ones to have heart problems at birth, but the focus is still very much on potential health issues and developmental delays. The doctors don’t tell you how much your child will make you smile, how your heart will almost burst when you see her do her ballet routine, that her antics will make you laugh daily.
Prenatal testing is being offered to women at a younger age now. In the past, typically women over the age of 35 where considered to be at greater risk. Now more physicians offer the screening at any age. Over the past few years Down Syndrome births have declined as a result. In the early 2000s when prenatal testing was introduced in Iceland, close to 100 percent of women who receive a positive result on the screening choose to abort. The country of Iceland doesn’t see this as murder, simply preventing suffering for the child and family, as it is seen as a deformity. Termination rates are not as high in the U.S., but still come in at 67 percent. Prenatal screening is still not 100 percent accurate, Therefore a percentage of babies aborted don’t have Down Syndrome.
Ohio lawmakers are considering a new bill that would make it illegal to abort a baby based on the prenatal diagnosis of Down Syndrome. If the bill passes, doctors who perform the abortions would receive a fourth degree felony charge. Most of us feel that aborting a baby based on a chromosomal anomaly is a form of modern day eugenics. Many children are born with health issues, cancer, cerebral palsy, developmental delays and yet our society still focuses on Down Syndrome.
Over the years I have been asked questions like… Will she outgrow it? How severe is it? Is she autistic? It still amazes me 11 years later that people don’t understand what Down Syndrome is. Finding acceptance can be difficult even in this day and age. We try to include her in everything and expose her to as much as possible.
Chloe participates in dance at Final Bow. She is a quick learner and has an amazing memory for the dance routines. As she walks past me to go upstairs she looks back and says, “Go play mom.” No, our life is not all that different and I would not change this life for anything. We don’t see Chloe’s Down Syndrome, we see our child, the gift that was given to us.
Chloe will look at me with her hand on her hip and sass me. There is no lack of understanding what is said to her. Speech has been slower to come as have many other things, but I have learned through this journey that our kids have the ability to learn anything that they are taught. It may not come naturally in all areas, and may not be in our time frame, but it is achievable.
The only reason children with Down Syndrome 50 plus years ago didn’t thrive is because they were locked away and not worked with. With medical advances and therapies, we have a lot more to offer. Even with all these advances there is still a huge need for education of the public and health care system. Doctors should be required to provide updated information to expectant parents. Support systems should be in place at all hospitals for parents after babies are born.
So many of our kids go onto have jobs, college educations, live independently and are also advocates for the Down Syndrome community. The only disability our children have are the ones others place upon them. With a world full of different classes of people wanting acceptance and special consideration, why should something as small as Down Syndrome be perceived any different?