When people learn that my son Silas and his wife Jenn Power adopted a pair of identical twins with Down Syndrome, they often say one of two things: “I could never do that,” or “You must be saints.”
I love Silas and Jenn beyond measure, and admire them hugely, but I can attest they are not saints. The explanation for their decision to adopt Josh and Jacob lies elsewhere.
As members of the L’Arche Community in Iron Mines, Orangedale, and Mabou, Cape Breton, Silas and Jenn have lots of experience working and living with developmentally disabled people. It’s what they like doing, and they’re good at it. Like most people who spend time at l’Arche, they describe the experience as one of blessings received more than bestowed.
This week comes scientific evidence they are not alone. Researchers at Boston’s Children’s Hospital and other centers carried out one of the largest surveys every conducted of people with Down Syndrome and their families. Respondents with Down reported overwhelming happiness with their lives, and family members said having a child or sibling with Down had been a positive experience.
The researchers published three studies on their findings in the October issue of American Journal of Medical Genetics. Their study sought to answer the questions most commonly asked by prospective parents of children with Down syndrome:
- What is life actually like for parents who have sons and daughters with DS?
- How many of them love their son or daughter with DS?
- How many of them regret having their child?
The researchers heard from heard from 2,044 parents of children with Down syndrome:
99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.
They surveyed 822 siblings of people with Down Syndrome::
More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.
Perhaps most importantly, they heard from 268 people with Down Syndrome, aged 12 or over:
[N]early 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life.
Longtime readers of Contrarian have encountered Josh and Jacob before, celebrating Canada Day with their rousing rendition of O Canaduck!, and on a fleeting moment when they were definitely not happy with their lives.
The experience of actual parents with actual Down syndrome is the best answer for those who say, “I could never do that.” They might not choose it, but when responsibility for someone with Down syndrome falls upon them, most people rise briskly to the occasion, and look back at the experience as positive and rewarding.