My son Nicholas was born in 1985.
My beautiful boy was perfect in every way but one. His brain was broken. I knew it from day one and I was ready to do anything to help him, anything I could. As it turned out, that was going to be nowhere near enough to save him.
A mother’s heart doesn’t know how to let go of her baby, and her baby never grows up in her eyes. It doesn’t matter what they do, or don’t do. Doesn’t matter what they do to you, their mother. Doesn’t matter what they do to others. Doesn’t matter what they do to themselves. You still love them with all your being and want to protect them.
Of course, it’s easier to protect them when they are children, but as they become adults, society turns away. You are told that they “have rights”. Rights to make their own decisions. Rights to hurt themselves. Rights to live or die on the streets. Should they not instead have the right to be protected from themselves? Where should their rights end and society’s obligations begin? I have been asking myself this question for over 18 years.
When Nicholas was a little boy and would get into trouble he always used to say, “it’s not my fault, it was an accident, I didn’t know”. He would say it just like that, not as separate statements but all together. It was his go to response for everything. He would say it with a look of bewilderment on his face and I see now how prophetic that one sentence was. It was a cry for help really, not an excuse.
“It not my fault” because he really didn’t understand society’s rules or how to behave when anxiety ruled his every waking moment. “It was an accident” because an accident is an undesirable happening that occurs unintentionally and there was never any real intent on his part to do harm. “I didn’t know” because he truly never did seem to know what he had done wrong, what the consequences would be or how to make it better. He still doesn’t know how or why things spiral out of control. He didn’t know as a child, and he doesn’t know today as a 36-year-old man.
Waking up was the hardest part for Nick as a child. I dreaded it. It was as though he only found peace in sleep and waking up was a nightmare. As soon as he opened his eyes he would start to scream. Not cry, SCREAM. This would often go on for hours. Doctors said I was spoiling him, or that he didn’t have a father figure or that he came from a broken home. Anything but look for the real reason. I had been telling doctors my son was autistic since he was a baby, but they didn’t listen to me.
When I told them he would rock for hours and bite himself, they didn’t listen.
When I told them that shopping malls freaked him out; that he would cower and wave his hands in front of his eyes, they didn’t listen.
When I told them he would bang his head on his crib until he bled if I didn’t get to him in time, they didn’t listen.
When I told them that he preferred to turn on the vacuum cleaner and lay his head on it instead of watching Sesame Street or playing with his toys, they didn’t listen.
When I told them he needed to be on my hip or sitting on my foot all day long, like a little squirrel monkey, they didn’t listen.
When I told them we had to take everything out of his bedroom except for a mattress, because he smashed everything and kicked holes in the walls, they didn’t listen.
Then in grade nine, he had his first public psychotic break. He ran head on at a moving school bus waving a stick and screaming that he was going to kill the kids on board who had been bullying him. He was taken to the children’s hospital by ambulance, in a strait jacket, where I was told that he was “on the autism spectrum”; that he had Asperger’s. I felt so relieved because I thought FINALLY! Now they will listen and they did, but only for a while. After that day, Nick saw a psychiatrist regularly and was put on anxiety meds and an anti-psychotic but when he turned 18, they stopped listening again.
Our system is broken, and society accepts it because it’s not their child. We are told there are no beds, or institutions to place them in. Psychiatrists refuse to “form” patients who present with suicidal or homicidal thoughts. So, they walk out of the hospital and return to drugs and the street, often alone and forgotten. We as their parents are asked why our loved ones can’t simply live with us, which is ironic because if the medical profession can’t help them, why would they ever imagine we could.
People don’t see a human being when they look into the eyes of a street person. Most people believe it’s their choice to be where they are. IT’S NOT A CHOICE.
No one in their right mind decides that being addicted to street drugs and being homeless in minus 35-degree weather is something they want. No one in their right mind sells their body in a back alley to pay for those drugs. Drugs that come to mean more to them than their own lives or the love of family.
Life has been a roller coaster for Nicholas and the ones who love him. He not only suffers from serious mental illness, autism and life-threatening epilepsy, he has brain damage from his many falls during seizures. He has had two strokes, almost drowned, broken his jaw and punctured his ear canal. He uses meth/cocaine, crack and cannabis to quiet his mind. He has mood swings that take him from a kind, loving person to the opposite of that and because of this he has been evicted from group homes and shelters, sometimes on the coldest days.
Nicholas is currently living at a shelter, after three recent stays in a psychiatric ward, and an attempted suicide. He is desperately trying not to use substances while he waits to get into rehab but that could be months away. I hope he makes it. I am doing everything in my power to help him, but resources are few, wait lists are long and time is running out for my son.
In so many ways, Nicholas is the bravest person I have ever known. He keeps going despite his many challenges and there is so much good in him. He is kind and always willing to help others. He stands up for those more vulnerable, often taking a punch to protect someone else and he shares what little he has with everyone. He has a heart of pure gold, and I am so proud of him.
Nicholas often says he hates living and gets terribly angry with me when I say I understand. He is right to be angry because I don’t understand. Not really and I don’t want to. I can only imagine his hell and it is a life I know I could never survive.
I read a quote that said, “You can’t save people. You can only love them while they learn to save themselves.” It sounds simple enough, but it feels more like watching someone drown, over and over and over again. Watching them slip under the water, gasping for breath and doing nothing. It’s that hard, it’s that impossible. Because if they don’t grab the life saver you threw them, if they don’t understand that reaching for it is their only hope, you jump. I jump all the time, even when I know I shouldn’t. Sometimes I wonder if death might not be easier for my son because at least then he would find peace. Don’t judge me. Losing my son would break me into a billion pieces but watching him live this way is also breaking me into pieces and it’s wearing him down a little more each time.
I watched a video the other day of people rescuing a dog. It had a broken leg, its ribs were showing, and it had open wounds, yet it wouldn’t let anyone near and kept trying to bite its rescuers. Luckily for the dog no one stopped to consider its rights. They got a rope around its neck and dragged it to safety. They understood that it did not understand how to help itself. That is mental illness. Not recognising the life saver. Biting those who try to help you because you are scared, lost, hurting, and confused.
Our brains are computers that control everything about us – our emotions and our thoughts, the beating of our hearts, and the movement of our limbs. Mental illness is like a broken chip in a computer that shuts the whole system down. It’s as simple as that. No more a choice than Covid or cancer. No less deserving of medical attention and support, without judgment or blame, for an illness that robs people of themselves.
That homeless person you pass on the street has a family, has a mother who loves them, but we can’t help them on our own. We need the support of the medical profession; we need society to realise that they belong to all of us. That it could be their child, their loved one or even themselves someday.
I don’t know how to fix the system anymore that I know how to fix my son, but I know this. The medical profession needs to get on side with us, because we can’t do it without them. They sounded the alarm about Covid, alerted the world and quickly found a vaccine in less than two years. Imagine if that same energy was put into helping the mentally ill. What a wonderful world it could be for them, for their families and for society as a whole.