I highly recommend this moving and well-researched article by Campbell K. Brasington, from the website of the Journal of Genetic Counseling. It’s called, “What I Wish I Knew Then … Reflections from Personal Experiences in Counseling about Down Syndrome.”
Ms. Brasington recounts her own professional journey, and tells how regular interactions with people with Down syndrome and their families caused her to change her attitudes toward the condition. Like many health professionals, she says, she had been taught to think of Down syndrome as a “devastating and mostly tragic event.” But after many conversations with families, Brasington says she came to understand that “children with Down syndrome are more like other children than different, ” and that “families can and do thrive with a child with Down syndrome.”
She debunks old beliefs that adults with Down syndrome are not capable of working, living independently, having relationships or experiencing quality of life. “In my experience, I have found none of these old beliefs to be universally true,” she says.
Here’s an excerpt:
From getting to know many people with Down syndrome, I’ve learned they are not so different at all, they want what we all want: love, acceptance, respect, dignity. Adults with Down syndrome are achieving more than ever before. With a lifespan now reaching into the 60′s, people with Down syndrome are dreaming big dreams. More and more are finishing high school and moving on to [post]secondary education. They are moving out of the sheltered workshops and working real jobs for real pay. People with Down syndrome take real pride in their work and in their paycheck!
… They have friends, boyfriends and girlfriends, and even get married. They enjoy music, movies, reading, sports, hobbies and church. They enjoy volunteering and having the opportunity to give back to others. They want and enjoy the same things as you and I. What makes their lives difficult are the attitudes of others, not Down syndrome! (Emphasis in the original.)
Ms. Brasington, who practices in North Carolina, offers some suggestions to genetic counselors on how to share “unexpected” news when giving a diagnosis to parents of a newborn. She says the term “unexpected” is more appropriate than “bad,” as it avoids placing a value judgment on the information given. Among her suggestions:
- Congratulate the family on the birth of their new baby;
- Help the family put the diagnosis in the proper perspective, and understand that this child will be more like other children than different;
- Reassure families that they have the skills to raise this child;
- Remind them to have expectations for this child; and
- Emphasize the importance of a balanced family life, in which each family member is important and has something to contribute.
She goes on to note, quite perceptively, that “many families describe having a child with Down syndrome as a life changing event, but it is not a life they would change!” (Emphasis in the original.)
They tell me later they feel guilty that they were so sad at the birth of their child; that their child is a joy to them and they would not change him or her now. They have come to learn what is really important in life, lessons they probably would not have learned if not for their child with Down syndrome: the strength of love, the importance of family, an appreciation for what is inside a person, that IQ or the acquisition of material things are not the only measures of success or happiness.
The full article is available online to subscribers, and can be purchased by nonsubscribers at a cost of $32.