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It's More Than 'Venting' When I Speak Up For My Special Needs Son

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Marcy White

I was a very private person before I became a staunch advocate for my son Jacob. I would rather have had gum surgery than talk about my feelings.

Things are very different now.

Parenting, in general, is hard. Parenting medically fragile children and teenagers is fraught with unimaginable stresses, heart-crushing decisions and endless battles to ensure our kids are receiving the best care and access to the fullest lives possible. Our children's needs don't fit neatly in a box, and a cookie-cutter approach to caring for our kids creates additional problems for all involved.

As medical technology advances, kids with complex needs are living longer than in previous generations. Hospitals are discharging children with complicated care into the community in ever-increasing numbers.

Unsustainable pressures are placed on moms like me to act as doctors, nurses, speech/physio/occupational therapists and problem-solvers for our children's medical needs around the clock without a break. This goes on for years, often decades, until our children pass away or are placed in full-time group homes.

It's no secret that I have publicly stood up to the Toronto District School Board on more than one occasion to make sure that Jacob's educational needs are met.

I'm thrilled to report that it has been recognized that in addition to benefiting from the academic inclusion, Jacob has taught teachers, students and administrators some wonderful lessons about perseverance and tolerance. He has won over many skeptics and proven that he is more than simply a body in a wheelchair -- a degrading position nobody should ever be in.

It is also widespread knowledge that Jake's medical needs have increased exponentially over the past year and a half. I've shared many details about the struggle I've faced with the home care system that is supposed to help me manage his medical needs at home.

Despite sufficient government funding (and not many people can say that!), home care nurses and the inherent dysfunction in the system are failing miserably, making our lives even more arduous and depleting than they need be.

A few days ago, I was surprised when a friend commented that she is used to seeing me "vent" on social media. I didn't think I regularly used online groups to unleash my frustrations (aside from the groups that are intended for such purpose, and thankfully there are a few).

"To the doctors, nurses and social workers who hear our struggles and witness our breakdowns, please don't just listen and commiserate. Step up and gather the courage to instigate change."

Sharing the obstacles I encounter as an advocate for my son with severe medical issues is done with the hope that people will begin to experience a bit about what I, and many others in similar situations, deal with on a regular basis. My objective is that if people know and empathize with our tribulations, change will be more likely to occur.

So I share.

Broadcasting these battles has never been for the express purpose of "venting." I share the demands of our lives in such a public way in order to assemble the strongest, safest and most comprehensive team of caregivers and opportunities for my son. The educational and home care systems in Ontario have not kept pace with the medical advances.

I am speaking up to draw attention to the deficits in my community. I am exposing some (not all!) of my challenges with the hopes that it will make a difference. I am sharing my experiences because most people are unaware of the flaws in the system. And if people don't know how the parents, caregivers and families are suffering, then changes will not happen fast enough for our generation.

I'm disseminating details about my conflicts for the slew of other exhausted, beaten-down parents who don't have the time, energy or ability to do it for their children. Just because I'm the loud mouth, pain-in-the-butt parent, don't assume that I'm the only one. There are so many of us.

To those in a position to effect change, whether you are in a government, medical or another field, please don't continue to stand by and watch us sink under the enormous pressure in which we find ourselves.

To the doctors, nurses and social workers who hear our struggles and witness our breakdowns, please don't just listen and commiserate. It might not be in your written job description and I know you are worried about alienating some of your colleagues and being viewed as trouble-makers in the eyes of your superiors, but you are the ones who see and know our desperation. Stop watching and wishing you could make things better for us. Step up and gather the courage to instigate change.

Please do your part to get the help we desperately need for our beloved children. They deserve it.

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