Thursday, November 5, 2015

post-OACRS musings and a unicorn selfie

Proud mom here... my kids' artwork. Some used their hands and pencils; my kid use their feet, fingers and paint.


This past weekend, I had a chance to attend the annual OACRS conference in Toronto. It's a moment when I can savour instead of sorrow over the needs of my kids, when I connect with other parents who are plowing along the path - and a chance to network with clinicians and other professionals who are advocating for kids like ours across the province.

There's the Honorable Minister of Children and Youth Services Tracy MacCharles. An intimate meet-and-greet breakfast with a politician who calls herself a Mama Bear with reference to her own family life. That's not politic-ese, that's real.

There's Donna Thomson, an author and speaker and mom of a son who has special needs. Her attention to care of the caregiver via her blog is relevant for both families who live with special needs and those caring for aging parents.  I've read her book, The Four Walls of My Freedom, twice already...

There's Louise Kinross, blogger and advocate and mom who manages the amazing Bloom magazine. Her wisdom from professional and personal experience is appreciated; she's the kind of person I wish for more conversation time.


There's Sasha Emmons, editor-in-chief of Today's Parent, who spoke openly about working in the publishing industry while striving for a vision of inclusivity. I've referred to my friend Anchel in past posts with her column about her daughter in the online version of the mag. More recently, Today's Parent has featured kids with special needs as models in their issues in a casual way, not shouting out "look at us with a disabled kid on the front cover"... which appeals to me as a parent (see my last post).


And there's wonderful parent friends like Darren and Anna and many more who work hard in their part of the province to promote understanding and increase awareness. That's the really awesome part of getting together. We may not share much history, but there's a unique freedom in our conversations, an automatic understanding of "I get it" when it comes to talking about juggling complex needs, living grief and life.

This year, the opening keynote was the incredibly talented Sonia Lupien who spoke about stress... and reminded me that having a dog is a good thing for managing stress. I will try to remember that the next time Luna pulls surgical gloves out of the trash for a game.


Our closing keynote was Momentum Choir. Having them perform at OACRS was a personal dream of mine for a number of years. When you have clinicians, families and professionals all committed to better care and support of children with special needs, this amazing group of musicians is singing to the choir.  When they sang in the conference that Tuesday afternoon, it was sacred.

And all of this good stuff is now inside me, renewing my sense of gotta-keep-goingness. It is complicated to set up care for my family. We had to balance the care between nursing, respite, and PSW... a total of about 8 different people. Ralph really wanted to attend, so this year, he was able to slip up for the Monday afternoon. Yet, while we made plans for dinner on Gerrard St. on Monday night, Bernice (Ella's mom) was inserting a new g-tube in Janneke at our house.  Of course Janneke's g-tube would have issues while we were both away.  So thankful for community.



I guess if there's a take-away, it's this. It's good to get away.  It's good to be reminded to breathe. I am doing my family a disfavour if I think I am the only one who can take care of my kid - but that's so difficult to believe and to do.  Yet, I don't take it for granted that I can go away here and there. I know there are caregivers/parents that would like to, need to, step away but can't. This makes my heart ache.

We need people to stand with us in providing for our children who otherwise cannot advocate for themselves because of visible and invisible disabilities.  It is tiring to be more than just a mom - when you also have to be the nurse and advocate.We need our communities to voice their solidarity in working to create awareness, support and understanding. We need leaders in our government who will use their roles wisely to make things better.

Want to help? Connect with your local Children's Treatment Centre.  Ask what you can do. Join a local charity group that strives to empower families and persons who need advocacy and support.

In one of the sessions, a mom asked a presenter about advocating for services for her child while living in a remote part of Ontario. The presenter, wonderful and educated, suggested the mom write her local health network to ask for more services. Not exactly helpful. So, this overworked mom is now going to find time to cleverly articulate to someone she doesn't know that her family needs help? Unless she is supported by others or has incredible resiliency, this won't happen. And from what I understand, it isn't happening in many Aboriginal communities.

Recently, there's been changes on the federal level with new cabinet members chosen. I can hope these folks have been chosen based on their merit and skillset... and I am excited to see how Carla Qualtrough manages her new role as Minister of Sport and Persons with a Disability.

I doubt Rachel or Janneke has given much thought as to who's king of the local, provincial or federal jungle. They simply smile and wait for someone to come to them to feed them, change them, and take them places. This incredible dependency is both intimidating and motivating.



And with that, I gotta keep going.

peace,
spot

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