A tragic rant. Take two.

This past Saturday I sat down to read the newspaper with my morning coffee and once again read about a mother who had attempted to kill her child with severe disabilities.  There is a publication ban so we don’t know the names of the individuals involved. What the news tells us is that the mother of an 18 year-old son with severe autism, whose behavior at times became violent, has spent the last 18 months in prison after the attempted murder of her child. In a desperate act she overdosed both her child and herself on codeine after watching her partner resort to punching her son into submission during a severe behavioural outburst. The presiding judge, Justice Colin Westman, in an act of humane compassion refused to allow the mother to serve additional time and has allowed her to return home. According to the Waterloo Region Record the judge, echoing many of my previously voiced thoughts on the subject, stated that our communal lack of support, including financial support, for parents raising complex children makes us all responsible. His direct quote, “shame on us as a society”. We all know I agree.

The prosecuting attorney, Jane Young, alleged that the mother created the dire situation herself by refusing to access professional supports, arranging her life to support her son, and resorting to self-medication to cope. Ms. Young alleged that it was these choices that led to the mother’s overwhelmed state eventually leading to her utter inability to cope and attempted suicide/homicide. Ms. Young goes on to harshly judge the mother calling her “misguided”, “stubborn”, and “very unrealistic”.

Are you freaking kidding me?

Where do I even begin?

Anyone raising a complex child is fully aware that the resources Ms. Young so confidently allege could have made a difference to this mother simply don’t exist. Services when available are fractured and inadequately funded. Parents are bounced between multiple ministries and funding, none of which offer adequate support. Throw in the fact that parents raising kids with diagnoses leading to behavioural challenges are often blamed for their kids’ behaviours, making the system at times punitive and judgmental (a lot like Ms. Young), and you have a recipe for disaster. Is it any wonder we keep reading these news articles?

Many children upon turning 18, like the child in question, lose all their pediatric supports including respite support and funding, to be replaced by adult services that are beyond inadequate or don’t exist. I live in fear of my son’s 18th birthday and my kid has above-average resources.   Wait lists for services, care, and funding, are brutally long. Parents, including those in crisis, may wait years for a long-term care bed while struggling to manage the care of a child who is becoming larger, harder to care for, and increasingly complex. In other words Ms. Young, where are these supports you suggest could have prevented the mother’s overwhelmed state?

Ms. Young further alleged that the mother became unrealistic about her ability to cope. She labeled the mother misguided and stubborn. It is this part that really gets my goat. Parents like this mother, and like me, get up every day for years and decades and live lives that are unsustainable and unrealistic. It is the air we breathe. The world has been telling us since day one of our child’s life that it doesn’t matter how unrealistic the care demands are we must keep doing what we’re doing. In fact, if we advocate for more resources for our children we are told we are “unrealistic”, “stubborn”, and “misguided” about the availability of resources.    Sound familiar? A few weeks ago I wrote about a mother who was labeled as a “trouble mom” because she had the audacity to suggest her child needed more consistent nursing support.   It appears parents will be condemned regardless.

Extreme parental caregivers often live close to the proverbial edge. We are repeatedly told by a world that doesn’t care, and won’t help, we need to keep functioning. The garbage about not being given more than we can handle is just that, garbage. We don’t sleep. For decades. We lift 120lb kids. Daily. We are financially stretched. We advocate to a world that tells us we are being difficult and unreasonable when we are simply trying to support our vulnerable children or relieve our overwhelming burdens. We quit our jobs. And you know what? We do not have a choice. We do all this because we love our children. But we also do it because society has made it unbelievably clear that they aren’t willing to help in any substantive way. Our lives are unreasonable because society seems to think that we can do it all and then feels justified passing brutal judgment when we inevitably cannot. Look at the Latimer case. Look at the Ali case. How many times do we need to tell this story? How many times will I write this blog post?

And then there is the final point. The legal system suggests that to prosecute these parents any differently than any other attempted murder/murder charge diminishes the value of a disabled child’s life. I am the first to vehemently assert that my child is fully human and fully valuable and should be treated as such. But it is both galling and unbelievably ironic that it is only when a parent understandably snaps that our society demands our children be treated equally. It is only when a parent finally falls apart that our children are deemed worthy of equal treatment. Until that point parents and children with extraordinary needs are told day in and day out that we are unworthy. We are not worthy of adequate funding. We are not worthy of adequate supports and care. We are not worthy of communal compassion. We are not worthy of having a voice in important conversations. We are not worthy of inclusion, or an inclusive world.  Apparently the only thing we are worthy of is unrealistic expectations and harsh condemnation when we fail.  We cannot win.

These tragedies, and make no mistake they are tragedies, do not begin when a parent snaps. They have been years in the making as society stands back and refuses to help and then inevitably judges overwhelmed parents by unrealistic standards they themselves would fail to meet. Once again we have abandoned a parent for 18 years and then crucified her for understandably and inevitably reaching an end point. Justice Westman’s response, while affirming and a breath of fresh air, is too little, too late.

These stories remain our collective shame. How many times will I need to write this tragic rant?

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