Being the Other Children...

As many of you may know, October is Down Syndrome Awareness Month.

In previous postings I have written posts about Clark to bring awareness of having a child with Down syndrome and how he affects family life, getting out the door in the morning, the need for his socks to be ironed, a Christmas tree up in August along with his quirks and funny stories about his larger than life personality.

However, this October I felt compelled to write about “Being the Other Children” and what life is like having a sibling with special needs….from my perspective anyway…

The birth of a baby with Down syndrome comes as a shock to most parents. In addition to the feelings of love and protection come feelings of sadness and grief…Clark’s birth seems so long ago that I can’t say as those feelings were first and foremost… our biggest emotion was fear…fear our baby would not live.

The fact that he had Down syndrome seemed less of a concern …..it was the hole in his heart that we most feared at the time… Gord and I said, “– Clark having Down syndrome we can deal with…but a hole in his heart?? … keep him alive…make him healthy.”

It is one thing for us as parents to receive this news, but what about his brother and his sisters? How would this affect them? Thank goodness Clark was number four and we knew (or felt we knew) the steps and stages of raising a child, so anything that arose we at least had a point of reference from having had three other children already.

In the first year of Clark’s life we were busy keeping him happy amidst open heart surgery, hernia repair etc…Annie, Emma and Harrison were always curious, patient and helpful as our lives revolved around Clark and his surgeries, countless appointments and endless treatments.

Because our first year was so insane, we decided as a family to home-school. The girls were super excited (Harrison oblivious to what school actually meant). We put the plan in motion. Many of our friends thought we were crazy and did not agree but it is what the girls wanted and to spend more time with them after that intense year...it made sense.

We had a great start to our home-school year…science experiments in the back yard, the kitchen table overrun with books, paper, pens, novel studies, and hands on activities all planned and in place…and then it happened…a tiny bruise on Clark’s ear lead to another doctor appointment which a few days later became a diagnosis of leukemia. Hands on home-schooling became worksheets and booklets – the complete opposite of my pedagogy as could ever be….

Gord and I remember that time in our lives vividly…Annie, Emma and Harrison would travel back and forth to Edmonton and home-school was independent and self-directed and probably not much fun. Grading their papers as they played with Clark and re-connecting from being a week or two apart. However, they were great! The girls did their work and accomplished what needed to be done.

Gord still often comments on how much he relied on Annie during that time and how she was a great help and how Emma was always so willing and so positive. Harrison was there for the ride and found he had gained two more mothers in the process.

Throughout it all we tried to maintain a balance of childhood for them and not to have them feel burdened or resentful of their youngest brother. We put the question to the girls about going back into the mainstream school system or home-schooled again – they both wanted to be home-school and to try re-capture time together that was so sporadic and emotional the year before…

Since the day Clark joined our family, Gordon and I have witnessed the incredible growth, independence and wisdom of Annie, Emma and Harrison as a result of “being the other children.”

They are compassionate, caring and accepting of people with differences. They often have maturity beyond their years and have an outlook on life that make them very aware of their blessings. They seem to recognize what are the important things in life and which are not.

We can see when Clark accomplishes something the pride they feel and their protectiveness over him. (Don’t get me wrong we have also witnessed how he can be the typical pain-in-the-butt-annoying little brother and he gets treated as such right back.) We also see these characteristics carry over to a broader consciousness of the needs of others and they take on that role of supportive friends towards others from their experiences as a sibling.

Many people have commented on our children and how compassionate, patient and understanding they are – we can’t help but think that having a sibling with special needs has added this dimension to their personalities.

We have been cognizant of spending time together, however, family holidays can be somewhat allusive. So often we have had to do individual activities with one child and then the other…

As Gord and I age and our children move into adulthood (okay… so the girls are already there…) new issues and worries come to mind…what will happen to Clark when we are gone? Who will love him like we do? Will our children’s future spouses accept him? I admit, on occasion those thoughts race through my mind causing sleepless nights…until Gord’s voice of reason says….”you only have to look at our other children to know he will be more than fine!”

So, this October, in support of Down syndrome Awareness Gord and I want to say how proud we are of Annie, Emma, and Harrison and the absolute wonderful, intelligent, sensitive, fun, caring, grateful and responsible young people they have become.

To all “the other children” out there with special needs siblings… we salute and admire you.

Feel free to add the names of your "other children" in the comments so we can say well done with a "wow"!.

To us, you are Down right awesome!