So I heard through the inter-tubes that today is Autism Awareness Day. My late brother Isaac Victor David Wieler was severely autistic and never spoke a word in his life. So I figured I should write a post about that.
I am the youngest of 4 kids. My two older sisters moved away from home before I can remember. Isaac was a few years older than I.
Firstly, I want to make it clear that Isaac died a long time ago and I am past the grieving period; so please there is no need for sympathy.
Looking back it is weird to think how his developmental disability held him locked in the mind of a child as my cognitive abilities developed at a natural pace. I remember being 5 or 6 and we would play the same games. Then I remember being an early teen and he still played with small toys and I played video games. Then when I was in high school he was still fascinated by spinning tops and I was driving a car.
It seemed normal to me but as I entered my adult life I realized that it wasn’t. Most people never have to face the challenges of having someone in their family with developmental disabilities. Most people react out of fear when they see someone like my brother, or they mock or they are impatient.
At this point I would like to describe his situation in BLUNT detail. Isaac died in his mid 20s. The last few years of his life were truly horrendous. He would defecate in his bed. He would throw violent tantrums, keep in mind he was a 250 pound man! He would punch holes in the walls. He had a few seizures a week. He would chew on his knuckles and violently strike his own head. He couldn’t be brought out in public; so he lived in my parents basement.
My family was stressed beyond the break point. There were people who sincerely cared who tried to help. People from various government agencies, but it was one of those situations where nothing was a win-win. They were on their own. It wasn't always that bad but over time his situation became worse and worse.
When Isaac was about 12 years old, social services and the RCMP just showed up one day and kicked in our front door. They pepper sprayed my dad, handcuffed my brother and pried him away kicking and screaming in the back of a police cruiser. They took me too, but that is another story. They sent Isaac to Margaret House, a mental institution similar to Michener Centre, in Calgary. I was returned to my parents about 10 days later but Isaac was gone for well over a year and my parents became locked in a legal battle with the Alberta government to regain custody of their child.
Eventually they won the court case and got Isaac back. But it wasn’t all rainbows and butterflies. There was permanent damage done, Isaac came out 100 pounds overweight and addicted to medication. Yes, that is how our Alberta government handles situations like that.
After that my parents, rightly, never trusted the Alberta government again. Over the years many different living situations were devised from in-home supports to Alberta Hospital in Edmonton to living in Michener Centre. Nothing was a win-win.
When people hear autism I wonder what they think? Do they see someone like Rain Man? Do they think of someone who can figure out if July 3, 1922 was a Tuesday or a Thursday, in a split second? From my experience autism is such a broad term that its use in our language can be misleading.
Isaac was labeled severely autistic. He couldn’t speak. He rarely made eye contact. He wore his clothing inside out because the seams bothered him. He was deathly afraid of rubber bands and blowing up balloons. He was prone to throwing violent tantrums in public and after the police were compelled to handcuff him a few blocks from our house, we weren’t allowed to take him out in public anymore.
I don’t know the answer to any of this. I wonder what the best course of action would have been. Maybe if the government had taken Isaac away as a toddler and institutionalized him at an early age and given him the professional care right from the beginning things would have been better?
When faced with the option of living in an institution with padded cells, rubber mattresses and large men with latex gloves restraining you to change your diaper; living at home with your parents seems like the best decision. But then when the situation at home perpetually grows worse as your parents age and they become unable to work, unable to provide care and unable to mentally cope; eventually the government will intervene anyways; as they did a few times throughout Isaac’s life. The options are bleak.
In a sense it was best for my brother to die when he did, because if were still alive today he would be a ward of the province wasting away in a padded, cell drugged into oblivion. Yes; even in this magnificent country of ours with all our wealth and prosperity, that is still the endgame for people like my brother.
He was innocent.
When I hear of other people going through what I went through I am filled with compassion. It is easy to retweet that it is world autism day. It is easy to write a blog. It is hard to do something that actually helps; but there is a lot that we can do to help.
Scientists and doctors have done some amazing work. There have been breakthroughs in behaviour modification. There are better medications. There are treatments available which can help. But there is always a battle for resources. All too often our political leaders count the nickels and dimes and forget about quality of life and doing the right thing. All too often our society pushes the problem out of sight so it becomes out of mind. People like my brother are often marginalized.
Even I am guilty of this. There are so many people out there who need help and so many problems to solve which one should I pick? Should I help the autistic people like my brother or should I help the sick kids with leukaemia? Should I help the homeless woman on the streets of Red Deer or the starving family in Africa? I don’t know.
I am not in this world to change everything, I am in this world to change something; whatever I can, hopefully for the better.
& IRL (In Real Life) - lets go for coffee!
Also, Alberta is about to enter a provincial election and my wife Krystal Kromm is the Alberta Party candidate for Red Deer North.
Check out her website to learn about her platform!
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