Advocate and Elevate
Why not?
It is a question I have asked myself for numerous years.
I truly believe that when you live with a child with a disability, the last thing you want to talk about is that disability. I fight with this every time a friend or someone at work asks me about the boys. I got used to giving short concise answers because I didn’t want to retell the story.
Now, I am starting to understand that the story is the part I should be telling.
In the early years, we told our story a lot. To every therapist, every doctor, every emergency room nurse that we saw.
By the end of it, we were more exhausted fighting the emotions of the story than the lack of sleep or the numerous trips to the hospital.
Sometimes you just want to listen for a change.
We started bringing a printout of the ailments, medications, and other facts so that we didn’t have to recite the words again. Not saying it out loud seemed easier at times.
Fast forward to now – we are telling our story in front of crowds. Amy and I were honoured to speak at the Austim Services of Saskatoon Gala last month. We talked about how the programs benefited our lives and the boys’ lives in numerous areas. I believe we had the opportunity partially due to this blog and our podcasts, but also because I chose to become part of their Board of Directors and answer the question of “why not?”.
Advocating is an interesting concept. You realize that you are a very small fish in a very large pond.
In many ways it feels like voting, it matters, but when you are one out of millions, so how much does it really matter?
We decided that we had to start somewhere and a month later Amy was speaking in front of parents at the boys’ school on our journey and how the treatments we used, and early intervention affected our lives. One small step for man…blah, blah, blah.
The publicity and recognition are nice at times, but honestly, it is the private messages that mean more. I have received some very heartfelt messages from parents of children with disabilities and it’s something I wasn’t prepared for. I started writing to help myself, call it therapy, but it has ended by helping others who are thinking the same things. It is honestly a unique experience for me, as I try to avoid emotion as much as possible.
The other thing I noticed is how much I now pay attention to others who advocate.
Most recently the Kelce brothers podcast (New Heights) and how they work with autism groups on a large scale in Philadelphia. Or actors and sports stars who have children with disabilities or other issues. I most likely heard it before, but never really took notice or paid any attention.
I just want to continue to thank those that read, subscribe, and have reached out.
This was a way for me to tell a story without having to say the words. A way to talk without feeling the emotion or nervousness of how others would react, and a way to showcase our boys who are wonderful kids, and I love dearly in their own little way. It was a way to advocate and elevate.
