The Advocacy Role
Yesterday, I just spent the entire day on a bus in order to attend an autism rally and advocate for my daughter’s right to needs-based therapy AND for all of the other children with autism in the province of Ontario.
4:10 a.m. Wake up
4:30 a.m. Drive to pick-up location
5:00 a.m. Board bus
10:30 a.m. Arrive in Toronto and attend Question Period
11:30 a.m. Attend Autism Rally on the front lawn of the government office building
1:30 p.m. Leave Toronto
6:15 p.m. Arrive at drop off location
6:45 p.m. Arrive home
I spent 10 hours on the bus for three hours in Toronto - where I joined hundreds of caregivers in a protest for supports and services for children and adults with autism.
I appreciate that travelling 10 hours on a bus is a lot, many of us advocate in small ways, in many situations.
As a caregiver, I am my daughter’s voice at therapy sessions, medical appointments and everyday-situations. While it’s something I do without thinking, it can be very draining.
Specifically, I’ve had to speak up and share concerns when a recreational program where I had paid and signed Summer up for was not offering the support which my husband and I believed was necessary to help her learn to skate.
Speaking up (aka being Summer’s voice) made me feel uncomfortable; writing the email made me feel guilty and having to talk with the Program Director when she called me to express her disappointment in my email made me cry. So. Friggin. Draining.
Keep in mind, that I was simply advocating for my daughter and helping her get the support so that she could learn to skate - which was what the program for kids with special needs had offered us parents.
All of this additional energy is draining and can take its toll on us caregivers.
Then, there’s the big advocacy - advocating for changes to governments and institutions to ensure that our children get the supports and programs they need to live a fulfilling life. This takes a lot more will power, energy and commitment. However, the impact is larger and longer-lasting.
When I start to feel overwhelmed, I ask myself who would actually invest all of that time and energy if it weren’t for us caregivers? I have major skin in the game, so of course, I’m willing to invest some blood, sweat and tears for my daughter.
All I can do is to continue to listen to my body and manage the ebbs and flows of advocacy. Some months I feel more energized and attend more events, write more emails, etc; while other months I’m quieter and am in recharge mode.
Neither is right or wrong. Each caregiver knows his/her own limits.
The accolades are not only for the big advocacy….every single time you represent your child and speak on his/her behalf, you are his/her voice and he's/she’s so darn lucky to have you!
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I am grateful that I get to spend this time with her and her brother. I will honour this time of a more relaxed schedule.
Whichever route a family chooses, what matters is knowing when to ask for help and how to get the right help to care for any family member that needs an additional helping hand.