Being heard as a parent of a child with multiple disabilities sits on a spectrum of various forms of action. On one end, appeals for compassion to have certain needs filled often comes with homemade baking as a buffer so as to say, “I come in peace”. On the other end of the spectrum sits an over caffeinated, sleep deprived mama bear.
I’m trying to keep my collection of four letter expletives in check in front of my son Luke, whilst on hold with one of several social service providers I play an unpaid personal assistant for. The names may change as well as the diagnosis, but the struggles of the caregiver often carry very similar experiences.
I know this story well. Very well.
Luke will be twelve next month. The fact that he’s still with us is nothing short of miraculous given he was born with a rare chromosome disorder called mosaic trisomy 22. For your shortcut introduction to genomics, he was born with an extra copy of his 22ndchromosome which is the one that determines how you grow. He’s about the size of someone half his age. He’s nonverbal and was also diagnosed with autism and cerebral palsy, but he’s also a prankster and a sassy pre-teen.
With age though, comes less appointments. He’s going to do whatever he’s going to do, so we’re really beginning to enjoy some consistent quality time as a family. It’s not as though from here everything is, “and they lived happily ever after”.
Caregivers of kids living with disabilities work hard to carve out a life amidst a broken system. A friend of mine a few years ago introduced me to the concept of patient-oriented research. (POR) Current evidence supports that if people with lived experience are incorporated into the research process not just as subjects, you have better and less paternalistic research. You have research with real life application. This concept is supported by the CIHR who developed the SPOR initiative a few years ago. (http://www.cihr-irsc.gc.ca/e/41204.html)
A friend was telling me about an initiative in Australia a few years ago. The phrasing they used was so fascinatingly simple: a desire for a normal life. While normal is something that can often be described as just a setting on the dryer, we have a lot of work to do to create consensus in Canada as to what a good and full life looks like for persons living with disabilities across the lifespan. An overall wellness model would in fact create a uniform understanding for parents in knowing exactly what their kids deserve in care.
For myself a lot of great partnerships have developed via POR which has given me an open door to start asking questions on how we can best support Canadian kids with disabilities … to make sure that all this great research gets in the hands of people who need it. In 2012 two researchers at CanChild Centre for Childhood Disability in Hamilton, Ontario created a simplified explanation for parents of the World Health Organization’s International Classification of Functioning, Disability and Health (or the ICF for short) called the Six F Words of Disability. This is a concept that truly has my heart as a mom. It’s a concept that we should be filtering the development of all our services and supports through. One F Word is never mutually exclusive over one another.
Function: I may do things differently but please help me try.
Family: Mine plays a supporting role in my life. Please give them have an opportunity for having a voice too, they’re my biggest fans.
Fitness: Please help me find ways to keep healthy.
Friends: Connections with others is important to my development. Please help me find ways to hang out with my peers.
Fun: Fun and play is how I learn and grow. Please help me find ways to be a kid.
Future: I will grow up one day. Please help me find ways to be a part of the community.
Motivated by the F Words, I help facilitate a social media based advisory network for families engaged and willing to collaborate in research. We have spent the past few years getting to know what sort of connection we can make together in the creation of research with real life application and have seen the benefits of real time knowledge exchange in an era where science is making a deeper impact by taking the work to the people. I look forward to seeing the potential in depth research that over time will build in thanks to in this ongoing partnership between caregiver and researcher.
WE WANT TO HEAR AND SHARE YOUR STORIES ABOUT DISABILITY!
Write your story in Word Document. 500 word limit
Send it to firstname.lastname@example.org
Cam will make suggested edits and email you back
Once we agree on the final draft, it will be POSTED
We sit back and see what happens