NRL News

Tremendous progress, but still a long way to go for children with Down syndrome

by | Oct 25, 2021

By Eileen Haupt

1st pay check!

October is Down Syndrome Awareness Month, a time to celebrate individuals who carry an extra 21st chromosome and to raise awareness about this most common genetic condition.

In our family, this month we also celebrated a major milestone for my 22-year-old daughter with Down syndrome, Sadie—her first paycheck! She recently began working at her first job. She is a conscientious employee and takes great care to get up at the sound of the alarm and be ready to leave the house on time. She is thrilled to be employed!

As with any other child, when your child is born with Down syndrome, it is difficult to imagine her future. Understandably, the unknown can be a bit daunting. But little by little, the future unfolds, and you take it one step at a time.

My experience has been that once we reached the step I had been apprehensive about, including this one, everything worked out for her just fine.

I was reflecting on the many ways we have been supported along the way and how far we have come in supporting individuals with Down syndrome.

To start with, newborn babies with Down syndrome are no longer abandoned by their parents and placed into institutions (at least not in the U.S.) as they were decades ago. They are brought home to be loved and supported by their families.

There are laws, such as the Individuals with Disabilities Education Act (IDEA) and Americans with Disability Act (ADA), that protect people with disabilities from discrimination.

There is advanced medical technology, especially open-heart surgery, to correct medical issues that are often present with the syndrome. Not all babies born with Down syndrome have major medical issues, but for those who do, they can usually be treated. Sadie had heart surgery at the tender age of 3-1/2 months to correct an AV Canal Defect. She has been healthy ever since!

Most states provide financial assistance for these treatments, as well as early intervention services from birth to 3 years old, physical and occupational therapy, preschool services, paraprofessionals in classrooms, speech therapy, and inclusion in the classroom. We benefited from all these services, even during the years we homeschooled.

There are post high school programs, such as Project SEARCH, that help students prepare for the working world. Sadie was fortunate to be accepted into this program hosted at our regional hospital. As a result, she was well prepared to join the work force.

There are many organizations that advocate or serve people with Down syndrome, such as, Special Olympics, National Down Syndrome Society, and Down for Dance, which provides dance classes for teens and adults with Down syndrome, based in California, just to name a few.

Our society has certainly come a long way since the days of institutions. Yet, there is a disconnect when it comes to unborn babies with Down syndrome.

A 2012 study estimates that about 74 percent of babies prenatally diagnosed with Down syndrome are aborted in the U.S. Another study that is updated each year, estimates that there is a one-third reduction in the overall number of Down syndrome births each year in the U.S., because of abortion.

To address this tragic trend, about a dozen states, so far, have passed laws that prohibit abortion from being used for discriminatory purposes. Most of these laws are immediately challenged by pro-abortion organizations. The courts typically come down on the side of pro-abortion challenges and issue injunctions that prevent these laws from taking effect.

However, there have been indications that this might be changing. There have been a few cases in which the courts have allowed these laws to go into effect, recognizing that states have a “compelling interest in preventing abortion from becoming a tool of modern-day eugenics.” (From Justice Thomas’ concurrence in Box v. Planned Parenthood of Indiana and Kentucky, Inc.)

Unfortunately, the U.S. Congress and some state legislatures, like Vermont and New York, are moving in the opposite direction. They have passed or are attempting to pass, sweeping abortion laws, that allow no room for restrictions, including anti-discrimination abortion bans. (They do this, while at the same time, apologizing for past eugenic policies, such as sterilization laws from the early 20th century.)

With all the progress our society has made in supporting people with Down syndrome and other disabilities, it is more than sad that we continue to carry the stain of eugenic abortion. We must help pro-abortion legislators make the connection, that the abortion laws they support enable eugenic polices they claim to oppose.

Sadie reached a major milestone this month; all unborn babies deserve to reach the first major milestone – Birth.

Eileen Haupt is co-founder of Keep Infants with Down Syndrome (KIDS).

Categories: Down Syndrome