Shocking research: People with Down syndrome are happy. So are their parents.

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.


How my family survived a highway crash

crash - 2 - 550

The five occupants of this 2008 Dodge Grand Caravan — my son, daughter-in-law, and three grandchildren — survived a head-on collision on the TransCanada Highway Thursday evening. I offer the following details in hopes that other families will find it helpful to understand the factors that decisively improved their chances of survival.

Shortly before 5 p.m, August 26, my family was westbound on Route 105 in Lexington, Nova Scotia, just north of the Canso Causeway, when a severe rain squall hit the area. Daughter-in-law Jenn had just slowed down when an eastbound car apparently hydroplaned and spun across the centerline into their path.

crash 3 - 275

Grandson Jacob, age 6, suffered a broken femur. The others — Jenn, my son Silas, Jacob’s twin brother Josh and sister Maggie, 8 — were badly bruised and badly shaken. Surgeons at the IWK-Grace Hospital in Halifax repaired Jacob’s leg Saturday. Doctors expect all to recover fully. We are grateful to them, and to the EMTs and volunteers who responded to the crash.

The driver and lone occupant of the other car, Marlene MacDonald of Port Hawkesbury and Washabuckt, died at the scene.

I offer my sincere sympathy to Ms. MacDonald’s daughters, grandchildren, and siblings. Events like this cause those affected to reflect on counterfactual alternatives; since Thursday, our family and friends have thought constantly of the MacDonald family’s suffering, and how easily it could have been ours. I am sorry for their loss.

Death and injuries in car crashes result not from a vehicle’s collision with another object but from what’s sometimes called the second collision — that of the occupants with the inside surfaces of the car. The second collision occurs a fraction of a second after the first.

Here are some of the factors that made the second collision survivable in my family’s case:

  • Jenn reduced speed to reflect driving conditions, lessening the force of the subsequent impact.
  • In response to legislation, insurance company pressures, and consumer demand, automobile manufacturers have made tremendous improvements in the crashworthiness of their cars over the last decade. Modern vehicles are better engineered to absorb and dissipate the force of sudden impacts while maintaining the integrity of the passenger compartment.
  • Jenn and Silas drove a 2008 Dodge Grand Caravan equipped with front and side airbags. The Insurance Institute of Highway Safety gives this model a “good” rating (its highest) for “frontal offset” and “side impact” test results. You can check the crashworthiness of your car here.
  • All the occupants were secured with optimal, industry-recommended safety equipment: the adults with standard lap-and-shoulder belts; the eight-year-old with a child’s safety booster seat held in place by a  lap-and-shoulder belt; the six-year-olds by properly secured child safety seats appropriate to their size and weight.

The last point merits emphasis. For many families, child safety seats are expensive to purchase and tedious to install and use. After Thursday, the expense and inconvenience look pretty small to us, the benefits enormous.

Finally, a word of thanks to the numberless, nameless engineers, auto executives, safety advocates, insurance industry risk analysts, and legislators who helped my dear family survive.

Their survival is not a miracle. It is the result of considered steps by real people to improve highway safety.