Guest blogger Tony D’Orazio is the co-founder of Jacob’s Ladder Special Needs Fitness and author of Down Right Joy.
The pro-choice industry has a huge market share and many repeat customers in the community of parents of people with Down syndrome. In the United States, it is estimated that 67% of those who have or are even suspected to have Down syndrome are not allowed to live. In Europe, the statistics are far worse, or far better if you ask them. In Denmark, 95% of those with Down syndrome are aborted, and Iceland proudly proclaims that virtually 100% of people with Down syndrome are not born.
There is some good news in some states in the US. Texas recently passed a law prohibiting abortion after a certain period of time and a few other states seem to be following that lead. Some of these laws are directly related to people with Down syndrome.
Stories abound of parents who say, “We want our child; we accept the fact that he or she may have Down syndrome,” but some doctors and others in the medical establishment keep pressuring. In one article, a mom and dad were told that their child had a high probability of having Down syndrome. They wanted to move forward and have the child, but reported that throughout the pregnancy they were “offered” to abort the child at least 15 times. There are also stories of parents who say medical providers reacted verbally negatively to them about having their child.
In our situation with son Jake, we did not choose or really even think about having any testing done prior to his birth. However, the morning after Jake was born, a neonatologist consulted with my wife Karen, who was alone at the time, and matter-of-factly informed her that there was a 99% chance that her son had Down syndrome. He then added what he probably thought was an encouraging statement when he said to Karen something close to, “You should be happy because they used to take the mongoloid children at birth and institutionalize them.” He then continued his “encouragement” by letting her know that there were some books and information she could get at the front desk about this topic, then stoically turned and walked out of the room. (For more on this story and “Dr. Bedside,” see chapter 2 of my book Down Right Joy).
Of course, this does not happen in all cases. The physician we ended up with for Jake as his first primary care doctor was an absolutely wonderful man who placed no limitations on Jake and what he could do.
Many coworkers and friends will also give you their insight and not well thought out opinions on the issue. One of my work friends informed me that they would not choose to have a child with Down syndrome because “it would place too much burden on our other children.”
Photo credit: Jake Muller on disabilityisbeautiful.com.
Genetics
Some newer technology is now available for embryos created through in-vitro fertilization that offers testing for a variety of serious genetic conditions like Tay-Sachs disease, cystic fibrosis and phenylketonuria. Genetic scientists are also getting closer to testing for other conditions like diabetes, heart disease, cancer, and even mental illness and autism. There are many parents in the in-vitro market who want to test for autism.
One genetic counselor at Sarah Lawrence College commented on the health complications linked to Down syndrome, such as increased likelihood of early onset of Alzheimer’s, leukemia, heart defects, and said, “I don’t think anyone would argue that those are good things.” But, she continued, “If the world didn’t have people with special needs and these vulnerabilities, would we be missing part of our humanity?”
Put another way, what did we miss out on without all those people with Down syndrome in the world? What part of our humanity got torn out, stripped away and lost forever?
This genetic counselor may have hit the biblical bulls-eye, and not even been aware of it.
Some very special people
If you talk with 1,000 parents of individuals with Down syndrome, you will likely hear stories of how much joy their child has brought into the lives of their parents and families, including in many cases the extended families. This is surely true in our family.
Here is a recent post from a Facebook site for parents of children with Down syndrome, from a mom celebrating her child’s milestone 10th birthday: “… someone stop time please, my heart is not ready. With her contagious giggle and her ability to see happiness in everything, I love her even more. Love you (Name) today and always.” This captures the true and pure joy of the relationship with her daughter and demonstrates the humanity aspect of our kiddos.
Often, parents will also post a delightful picture of them and their child with Down syndrome. In many of these posts, all you need to do is look at the picture, and you will be filled with joy, as you see the parent and child together. Parents in this community understand how great that feels.
So, there is a certain joy present in many of these individuals that is noticeable and may be infectious. Please do not think I am saying that every child with Down syndrome is always joyous, loving and never has any issues. That is an old cliché. But there does seem to be something different, maybe a higher sense of simple happiness. Can this be one of the very best parts of our humanity?
In another particularly heartwarming story and video on Facebook, a young teenage boy with Down syndrome sensed that his 2-year-old nephew was “…overstimulated and all attempts to calm him down and comfort him failed.” So the teenage boy took it upon himself to pick up the toddler and simply carry him out on the patio for a quiet-time break in the action. There he held and hugged the boy, bounced him on his knees and genuinely ministered to him. It was probably one of those normal and loud family get-togethers where people talking and laughing at the same time. We have all been there.
So this teenage boy had maybe an innate sense that something was bothering his nephew. He recognized something that maybe the others missed, and more importantly, took positive action to help.
Follow Tony and Jake on Facebook.
Subscribe now on your favorite podcast app!
