You know, dear readers, seeing your child suffer shouldn’t be put on any parent’s heart.
None.
To understand that your child will be handicapped forever is sometimes to feel like a parent in a straitjacket woven with tears that no medication can burst. Yes, there are magic moments and small victories – we love them so much, our children – but it is often, depending on the degree of the child’s disability, very difficult.
And the most heartbreaking moment for caregivers or parents of disabled children who have become adults is often the placement. Placement, this word that drips with guilt and shame. Unfortunately, for my part, after nearly 20 years of diaper changes, disorganization and roller coaster with my beautiful son so handsome that I love so much, I had to resign myself to settling him in a respite home with continuous assistance, because I could no longer pay the multiple babysitters who left one after the other and the stress had simply become too great. And the respite offered was non-existent.
PHOTO PROVIDED BY THE AUTHOR
Loïc, son of the author
The analogy I could make to explain the life of a single mother with a non-verbal autistic child who also has a significant impairment is that this life is similar to diving in the deep sea with a Speedo and flip-flops as flippers. When you swallow water while swimming, it’s bearable at first, but if you’re pushed your head under water for 19 years every day, your lungs end up not being able to support you and swimming turns into a nightmare.
I ended the full time adventure with my boy spitting water and trying to catch my breath.
Long story short, it was my life against his full time. And selfishly and also intelligently, I chose myself.
I chose to stay alive.
Alive to take care of it, alive to protect it, alive for it. And prefer to see it and take care of it on weekends, and especially see it and take care of it in good shape and in good health. Solid as a rock, like at the start of this parenting adventure. Solid and kind. Solid and protective. We had found a balance in this journey.
Assault
Unfortunately, and this, in a horrible way, dear readers, a news has broken this beautiful balance finally found. My son was allegedly assaulted at his residence1.
Imagine my pain and dismay when I learned that workers at his residence would have hit my boy. We are not talking about disorganization between clients of the residence, we are talking about assault on the part of two workers hired to take care of disabled adults with intellectual disabilities in this residence. Not only was my boy beaten, but other residents were also beaten.
Eventually we will find out whether these accusations are true or not, but I fear the verdict. Since I was informed of the charges related to this file, which is, I want to emphasize, judicial and above all public, I have been fighting with the government to have cameras installed to monitor the common areas of these residences.
Cameras to avoid other tragedies, to protect these eternal children, and cameras that could also protect those involved. Images that I would like not accessible to parents, but accessible on an ad hoc basis to managers who should be there to ensure the well-being of residents and also employees. Employees who are often dedicated. Moreover, the vast majority of employees are dedicated and caring. So, I naively thought it would be easy to install… rookie mistake.
It’s a real battle.
However, the child abuse law proposed cameras for CHSLDs. To my amazement, I realized after multiple calls, meetings and emails that helpless adults like my son have been overlooked regarding the installation of cameras.
Yes, forgotten. There will be surveillance cameras in CHSLDs, but not in residences with continuous assistance. So, I have to fight to get this addition to the child abuse law for my son’s residence.
For a year, I have been told that it may be a good idea, even that some senior leaders would be for it, but the administrative maze, and blah, blah, blah… and in passing I have been told that there would be a probable reluctance on the part of the unions in the face of the cameras.
Ah good ? If I understand correctly, as a society we agree to be filmed when we are on the road, in almost all the businesses we frequent, the same for restaurants, cinemas, performance halls, etc. ; but would it be a lèse-majesté crime to install them in these residences?
We think it’s important to film the meat counter at Walmart to avoid thefts, but we think it’s very complicated to install cameras to take a benevolent look at helpless adults? Adults with disabilities and, moreover, who cannot express themselves verbally!
Where are we?
A year of nightmares
You will tell me that changing laws is complicated, I grant you that. But my battle has been going on, I remind you, for almost a year and I am still waiting for a positive response from the CIUSSS and the government. A year where anxiety has permanently settled in all my dreams and all my thoughts. A year of nightmares.
What exactly are we waiting for to act? That other children or adults are still hit? Because my boy may be 26 years old, his favorite doggie is Dumbo and, proof of his intellectual disability, he still listens lovingly for a quarter of a century to Teletubbies clapping and laughing like a child.
It’s just a baby in a big body.
He is totally and completely at the mercy of the people who take care of him. Plus, he only says 50 words, and do I really need to add that he has NO way to defend himself, none?
So, message to Mr. Carmant and Mr. Dubé: can you speed up the process for the installation of these cameras, it is more than urgent?
And, as a proud Quebecer, know that I know full well that my society would find it more normal, urgent and appropriate to take care of the physical integrity of vulnerable adults and children than to watch a steak at Walmart.
Benevolence should be the first concern of these gentlemen and of our government. Kindness. Goodness !
We can no longer close our eyes, because these eternal children need us and our protection. They are speechless. And it’s time to quickly make ours heard!