Sunday, May 17, 2009


Today I had the honour of presenting a session at the Canadian Down Syndrome Society's annual general conference here in Halifax. Not doing the keynote was a bit of a treat, so I was able to sit back and relax and watch it all unfold. I heard an excited, 'Hi Dave' from a Kelly, a fellow with Down Syndrome from the interior of British Columbia. I've met him a number of times and he rushed over to catch up. Again, I was taken with how much life he is living when I know so little was predicted for him.

I asked if he flew from Kelowna and he answered, with Down Syndrome exactness (does anyone else know what I mean) 'No, I flew from Kelowna to Vancouver, from Vancouver to Calgary and then from Calgary to Halifax.' Wow, that's a lot of flying. I shouldn't have done it, I know (I came from an era where people with disabilities weren't allowed to even dream of independent travel) but I asked if he'd come on his own and he said, confused, 'Yes.'

He told me, briefly of his involvement in a self advocate group and his work on medical issues and access to medical care for people with Down Syndrome. He spoke with the clarity of a seasoned advocate. Kelly knew who he was, what he was talking about and the importance of the issue. Wow, encore.

Then after he left me and was returning to his seat a young father was walking his little boy with Down Syndrome. Walking was still an adventure of teeter and fall for the little boy but he was putting his whole effort into it. At one point the boy looked like he was going to fall over and Kelly, as quick as magic, put his finger out for the boy to grab. Then Kelly, the boy and Dad walked a few steps until the little one found his footing again.

Never was a picture more perfect. That little hand with it's tiny fingers holding on to the hand of an elder in his community. That little boy will walk in the path that Kelly made. That little boy will go to places because a thousand Kelly's already gained ground for him. That little boy will owe much to the love of his parents but he will owe much to his other family. The family of people with Down Syndrome. The people who have integrated schools, depopulated institutions, embraced community. That little hand held on for dear life ... a life he'd already been given by two parents and a hundred thousand brothers and sisters.


Word Geek said...

What I like best about that story is not only that the little boy had strong, independent behaviour modeled for him by one of his community, but that his father was there to observe and learn that his son could grow up to be not just independent but proactive in changing the world. Of all the problems faced by the Down's Syndrome young people I've met, the biggest one has been the overprotectiveness and associated low expectations of their parents.
And yes, Down's Syndrome Exactness - perfect description!

Tamara said...

These types of comments are always easy to make when you're not walking in someone's shoes Word Geek. As a parent of a child with Down syndrome, the low expectations typically come from people other than the parents; and what looks like overprotectiveness could well be the proper response to experiences.

Terri said...

I LOVE this post, and I just love that image. Perfect.

Belinda said...

An elder and a hero. I love that there are heroes and role models that are peers because they are the ones that count for any of us.

I recently visited chatted with someone I've known for a few years, from adolescence to young manhood. He was bulking up, growing up and out. He told me of travel plans--a trip he was saving for. I told him about someone else I know who is now in his seventies but still traveling. This man has traveled the world--he can recite more trips than I could hope for--and he has done it on ODSP and now Canada Pension! His budgeting skills and focus in saving leave me in awe.

If someone was planning to learn to read, or take a course, I would tell them of Stanley, who into his eighties never stopped learning, taking courses, being proud of his Special Olympics medals and certificates, framed on the wall. One of his medals now hangs in my home, framed in a shadow box, with the piece of knitting he was working on when he died.

Oh yes, these are my heroes too.

Kris Stableford said...

Your posts often give me goosebumps, in a good way. This was an example of such a post. You certainly have a gift for describing things you see...and for choosing which things you've seen call out for description! Thanks, Dave.

CJ said...

What a wonderful description! I'm sure the father was able to take in that scene and his heart was lifted.

I know mine was.

Katy said...

Beautiful post. I know that meeting other aspies has been a huge help to my boys (and their parents ;) to see that they will get through Junior High and can be successful and happy adults.

Role models are so important for all of us to see what is possible. Unfortunately it can be easy to forget in the day to day struggles...

Karyn said...

I love the post Dave. It is beautiful. It also leaves me wistful for the dream I had for my son. My David was to grow into a beautiful, independent young man. Not without his struggles but triumphing.
Never did I envision the struggles he and I would face in his young adulthood just making sure that those who care for him understand him and treat him with respect and kindness. He shouldn't have to fight so hard to have a life, his life. He is so brave.

Anonymous said...

Thank you Dave. This was just the right post for me at the right time. I am struggling with how to best teach my son, who has Down Syndrome. We just offically pulled him out of school to homeschool him - part of that DS parent "overprotectiveness" (WordGeek) LOL! - Seriously - he has seen a teacher 3 times the entire school year and they worked on 2 colors. In the last three weeks, he has been able to master them.

Unfortunately, for many parent of children with DS, we are constantly bombarded with messages of how what are children are going to amount to. We know differently. Add to that the medical issues that many DS kiddos, like my son, also have to overcome, and the expectations of them go down exponentially.

As a parent, I thrive on hearing stories of those who have gone before and are living wonderful, full lives. We can never be sure of WHAT the future holds for any of us, unless we don't try at all.

Hugs Dave! Let me know if you are ever in Illinois. I would LOVE to meet you or to hear you speak!

Steph and Christopher OurLittleMan

Mark Pathak said...

Like Terri said, lovely post with a lovely image created!!

Nice one Dave.

Charlene said...

Thanks for this beautiful post! My son is the little boy learning to walk. Reading this story brings tears to my eyes. We have big dreams for our son and hope to help him find his way. We are so grateful for people like Kelly who are working toward making the world a better place for a younger generation. And we are happy to report that his walking skills are improving each day :).
Thank you! I will carry this image with me on our journey.

Lisa said...

What a beautiful story. I can see the image of my son and husband when my son was learning to walk, it took him awhile to be steady but now at three and a half he walks, runs, and jumps like a pro! He is the reason that I breathe every day and he has taught me so much and given me so much love that I feel full. Thank you for bringing tears to my eyes today.