Kids Come First Annual Golf Tournament
Friends and families, kids, thank you so much for inviting me to be with you today. It’s been a great day and I’ve had a wonderful time getting to know you.
It’s been four and a half years since I’ve been on Parliament Hill as a Senator and I always say, “a day off the Hill is worth two on the Hill.” What I mean when I say that is that a day off the Hill, getting to know different people, listening to them, and learning about what matters to them, that’s the kind of work I love.
The Committee work, the backroom political stuff, the time spent in the Chamber … well, we know that’s important too, but it’s the time I spend with people like you that make my job the best one in the world.
I decided when I became a Senator that I wanted to devote my efforts to helping kids. That decision has put me in touch with some wonderful organizations tackling important issues.
Organizations such as Special Olympics which makes sports available to people of all abilities, SOS Children’s Villages which establishes homes for orphans in countries devastated by war and conflict, and different groups fighting child poverty right here in the Ottawa Valley. It has also brought me in touch with some great people, people like you at Kids Come First.
I was so moved when I went on the Kids Come First website and read about the families that make up this organization. When I read the stories from Danick, Hunter, Devlin, Emily, Cassidy and Jackson, I thought, “Everyone needs to read this. Everyone needs to know what it’s like to live, learn, and play when you have autism.”
Everyone should learn about days full of challenges and barriers. That’s important. But it’s just as important to learn about the positive – the breakthrough moments, whether it’s the day that eye contact is made, when a gesture communicates a need, when some words express an idea, or a hug says “I love you.” And it’s also important that people know that kids with autism are just like other kids. They play hockey, join Cubs, go to school, and spend their days just being kids.
As someone who spends his days in the often complicated, and sometimes unpleasant world of politics and government, I like the simplicity of Kids Come First. You raise money for schools like Mary Honeywell and Brother André so that they can help kids reach their full potential. You raise money and give it to families respecting that they know best what they need to cope and move forward with autism. It could mean a night out for a couple who haven’t spent one-on-one time together for years. The money could be spent on alternative therapies that aren’t funded by insurance or OHIP. It could also be for vitamin or dietary supplements.
It’s for the parents and the families to decide. Families with autism know best.
This became abundantly clear to me when the Senate Social Affairs Committee conducted its enquiry into autism. We heard from medical experts, policy wonks, researchers, and decision-makers, but it was the people with autism who spoke, and their families, who made the deepest impression. Our final report, Pay Now or Pay later, Autism Families in Crisis called for action and funding now. The government response, however, was a lot less action-focussed than we had hoped.
Yet action is what we need. Autism is on the rise around the world and we don’t know why. The U.S. Centers for Disease Control and Prevention have called autism a national public health crisis. The problem is such that April 2 has been declared by the United Nations as World Autism Awareness Day.
Here at home, I have introduced a Bill to make Canada recognize World Autism Awareness Day.
Now I know that having World Autism Awareness Day won’t change the everyday reality of Danick, Hunter, Devlin, Emily, Cassidy, Jackson, and others. But it will draw the attention of Canadians to this important issue. And when more people know about autism, more people will insist that we take action, so that we may eventually have a positive impact that WILL change the reality of your kids.
The sad fact is that way too many of Canada’s children are falling through the mesh of our social safety net.
In addition to delivering non-stop care, parents of children with autism need patience and persistence to understand the intricacies of what they are entitled to, which lists to get on, and where to ask for help. For a rich country, such as Canada, this isn’t right.
As part of the work of the Senate Social Affairs Committee, we traveled to Cuba to do research about health issues. While there, we visited a school for children with autism. It was impressive: a one-to-one ratio of teacher to student. Parents and grandparents were involved. It felt like a really good place.
So if Cuba, a poor country with so little, can do so much for their children with autism, surely Canada can step up to the plate and do more.
After all, if these children had cancer, would we debate whether or not they deserved radiation, surgery, or chemotherapy? Would we fight amongst ourselves about which treatments deserved funding and pass the buck .… LITERALLY …. about who should pay? Of course not.
I believe that declaring April 2 World Autism Awareness Day, although a small step, is an important step in the direction.
We will be saying to people with autism, to Danick, Hunter, Devlin, Emily, Cassidy, Jackson, and others “yes, you matter”. “Yes we care”. We will be saying to all Canadians that autism is a growing problem that affects our communities, our schools, our workplaces, our neighbourhoods, and our country.
Just as today we are all together to celebrate generosity and caring and to help people meet the challenges of autism, so are we here to celebrate small victories and to celebrate each other. We must remember that we are all here together. There is no “us” and no “them” with autism. We’re all in this together.
Thank you very much.