The impact of a life with Down syndrome

What is the impact of a life with Down syndrome? A new study reports on the impact on families and one young woman’s life testifies to the impact a life with Down syndrome can have.  

The impact of a child with Down syndrome on a family

Dr. Brian Skotko and his team of researchers have published new information on the impact of a child with Down syndrome on a family. The new study is the result of a reevaluation of the surveys his team conducted of parents, siblings, and individuals with Down syndrome, themselves. Here are the crib notes taken from a report on this significant study:

In 87 percent of families, everyone expressed feeling love for members with Down syndrome, who in turn expressed love for the other family members; in 83 percent, everyone was proud of members with Down syndrome, who also felt pride in themselves.  The extent to which the abilities of members with Down syndrome were impaired had little or no relation to attitudes within the family.

Small minorities of respondents – less than 10 percent in the following examples – did report some negative attitudes.  Younger siblings (ages 9 to 11) were more likely to report being embarrassed by their sibling with Down syndrome if their parents also reported embarrassment, and siblings over the age of 12 were more likely to want to “trade in” their sibling with Down syndrome if their parents expressed regret in having the child. Parents’ perceptions of the quality of relationships among their children with and without Down syndrome proved quite accurate.

As the report on the new study shares, the main question expectant parents have when receiving a prenatal test result for Down syndrome is, “what will this mean for our family?” My conclusion (note not that of Dr. Skotko and his researchers) is that the parents have the ability to determine what having a child with Down syndrome will mean for their family. Based on the example the parents set in accepting and loving their child with Down syndrome, their other children and the child with Down syndrome will likely share those same feelings of acceptance and love. The full study can be viewed here.

The impact of a life with Down syndrome

I somewhat regret the subtitle to this section, since its subject never highlighted how many chromosomes she had.

Laura Lee lived an impressive life: George Mason University alum, employee at the World Bank, and an advocate who testified at local, state, and Congressional hearings on the importance of inclusive education. Her verbal advocacy was preceded by her actions: she walked the walk, before talking the talk. Because of the life of Laura Lee, there are inclusive education programs at many Catholic schools, at over 250 colleges, and there is at least one teacher at one of those programs.

Sadly, Lee passed away in her sleep in February, coming as a shock to all who knew her and her parents, Stephanie Smith Lee and Gen Lee, all leaders in the Down syndrome community. The Washington Post published a very moving tribute to Lee’s life. The story of Lee’s high school classmate is what I’ve chosen to highlight here:

Megan Battle was a freshman at the school when Laura Lee was a sophomore. Battle had no experience with people with intellectual disabilities and all the teenage angst of fitting into a new school when Lee and another student in the Options program chose her as their friend. “I was like, ‘Now what do I do?’ ” Battle recalled recently.

But by her junior year, Battle was sharing a limo to the prom with Lee and her classmates and cheering Lee on as she rocked out on an inflatable guitar by the stage. Later, in college, Battle gave up studying nursing for special education and now works as assistant director of the Options program at the same school where she met Lee. What started as a program with six students now serves 16 a year. Administrators receive calls from schools nationwide asking how they might replicate the program.

“I needed that friendship more than Laura did,” Battle said. “Everything I am now and everything I hope to do in the future is fueled and driven by those friendships.”

As relayed in the previous section, the first concern of expectant parents receiving a test result for Down syndrome is “what does this mean for us?” The connotation of the question is negative, based in worry and understandable fear of the unknown. But studies like that of Dr. Skotko’s as evidenced by the life of Laura Lee should change that question to not be so negatively-tinged, but rather one with more hope and wonder of what this child will mean for all of us.

Lee’s obituary advises that donations may be made to memorial funds benefiting students participating in the inclusive programs she helped start at her Catholic school or at her university. If so moved, instructions may be found near the end of her obituary here.