Judge and Jury by Shauna Lee
Over sixty years ago my grandmother gave birth to a baby boy. He barely survived his birth. After nearly a year of wondering why her son was in pain and not developing along with his peers a doctor gave her a diagnosis of Cerebral Palsy. She was told in the doctor’s office to “put him in an institution and forget you ever had him”. She stormed out of the office that day and began to change the world around her son.
She was often told that her son’s condition was because of something she did. She was told that she was sinful, and that is why her son was afflicted with this condition. She was told that if only she had done something different, the outcome would not be Cerebral Palsy. She was told this by family, by friends by strangers. Over and over the message was, you, as a mother have done something to deserve this situation.
She often took her son on walks to the Alberta Legislative Grounds. She was not afraid to take him out in public. Wherever she went, he went. Whatever the family did, her son did. He was treated equally along with his younger brothers. She told me once that when he was two she had him in his stroller, walking through the park. Two other women, with their own children in strollers, commented loudly to one another “I can’t believe she takes that retarded boy to the park! How awful!” Even sixty years after it happened, this story made me terribly sad.
Waldemar and Ruth Peterson with sons Gerry and Dale.
My grandmother spent her lifetime devoting her energy to changing the way people looked at disabilities. She introduced accessibility to schools and public buildings. She opened a group home for physically disabled adults so that they could live independently. She constantly battled attitudes, judgements and perceptions of the physically disabled.
Society has indeed, come a long way towards physical disabilities in the last sixty years. We no longer chain up children like animals. We do not shut them away. We care for, accept and even applaud parents who struggle with these challenges. We encourage independence, we seek inclusiveness and thanks to media we are no longer taken aback by physical differences in others. I know this is not the case in all circumstances – there will always be judgement but as a whole, we have improved our judgements against the physically disabled.
Now I am raising my own family with challenges.
I remember the first night my first son was born. He could not keep anything down. He struggled to feed and then once done feeding he would vomit everything. My first message as a mother was, you must be doing something wrong. We struggled through the first year. He cried, he was in pain, he couldn’t digest food properly. Over and over the message came back to me, you must be doing something wrong. Not once was it ever said to me that this problem may be outside of my control. I listened to every opinion, followed every grain of advice and ignored my own instincts. Still he struggled. Finally after a year a doctor took a look inside him and said, you are doing nothing wrong. In fact, he said, if you had not been so persistent he would likely have been on a feeding tube.
That was my first taste of relief. It wasn’t anything I was doing, it was a physical problem that I had little control over. I could help, but I was not the cause. People continued to judge and yet I held tightly to the doctor’s words.
As time moved on my son showed many signs of major emotional dis-regulation. I was judged, yet again saying that it was his terrible twos, I should be stricter, softer, more punishment, more reward… and on and on. Then it was a three year old terror, and four year old. I kept telling myself that I am an intelligent person and I should be able to figure out this parenting thing. No one suggested it wasn’t me.
My second baby came with the same stomach issues, and more. I clung to the fact that this wasn’t my doing, and this time I listened to my own instincts, advocating for help. I sought help for my oldest son, and advice was given, parenting books were handed out, classes were attended and I kept saying, I’ve tried all of this. It doesn’t work. That is why I am struggling.
As my third baby came with the same stomach issues I held tightly to my confidence that I could conquer her challenges. Meanwhile my oldest raged on in the background of everything we did. I met with counsellors, psychiatrists and when he was six I began the journey of incorrect diagnosis. I was told he had Obsessive Compulsive Disorder. He had Schizophrenia,Bi-polar, Attention Deficit Disorder. He had separation disorder, he had anger problems… and on and on.
Each label came with pain and heartache. None of them sat well with me. None of the labels fit – exactly. Yes he was a bit OCD, yes he was angry, yes he had severe mood swings… but none of the labels matched him completely. The rest of the missing pieces were blamed on my parenting. A burden I dragged with me everywhere, while dealing with my other two, who weren’t terribly different. It was such a terrible time. I felt like perhaps someone else should have been given the task of raising these children. That if indeed I was responsible for their demeanor than I was not fit to be a mother.
Around every corner was judgement. From family, friends, strangers. I too had the whispers out in public as my oldest chose to lose his mind in public settings. I too faced opinions and criticisms. I talked at length with my grandmother about it. She shared with me her struggles and I thought, society has changed, but regarding mental or neurological issues, they are still the judge and jury.
Finally after a lengthy hospital stay I met a man who made everything make sense. It was probably just another consultation for him but for me, it was a lifeline. The doctor asked my husband and me, does he do this? Does he do that? Do you find this happens? Yes, yes and yes. It’s simple, he told us, he has Tourette’s Plus. I had no idea what any of this meant. He handed us a thin green book and took us on as one of his patients. I remember reading the book ‘Understanding Tourette’s’ for the first time. It was if angels were singing every time I turned a page. It wasn’t me. It wasn’t me.
When my youngest daughter was two I put her in a special program. I said, I believe she has Tourette’s Plus also, and this is why. The psychologist at the program told me that I was probably just seeing that because that’s what I wanted to see. I was outraged. As though I would wish this upon anyone. As though I was not struggling with enough heartache. It made me angry. The anger caused me to seek help elsewhere, which is where a doctor agreed, yes, she also has Tourette’s Plus. It is a genetic disorder so it makes perfect sense that she would have it too.
Judgement carries on for those of us who raise children with emotional, mental or neurological disorders. The unseen challenges. I endlessly see people judging a melting down child, a parent who is losing their cool or a mother with a distant, hopeless stare. We are tired. We are worn out. We are wondering, is it me?
Just lately I had someone comment about a child with a disability that the only disability the child had was his parents. This stung me so deeply. A friend of mine told me that people were constantly judging her over-weight son. No one bothered to find out why… he was facing the battle of his life, taking medicine to help fight his leukemia. We are all doing the best that we know how. We are advocating and protecting our children to the best of our ability. We are loving them through their experience.
We are all humans. Flawed individuals. Whether we have a physical challenge, a mental, an emotional challenge…. It is all there. Some may hide it, some may deny it but there is no one who does not face challenge on some level. My children have bigger challenges than some. But there are many who have much greater challenges.
When you see a parent struggling with a child who is unruly stop and say, I’ve been there. You’re doing a great job, or maybe just ‘kids can be challenging’. Why are we so afraid to talk about mental health? Neurological disorders? Behavior issues? They are everywhere. They affect all of us.
Parents do not need a judge or jury. We need no additional blame within the challenges that we face. We need love, support and acceptance. We need help, encouragement and kindness.
