Two years ago Mary (names have been changed to protect the privacy of the family) spoke to lawmakers at Queen's Park about her son Pedro. His story started off happy, a gifted student but by Grade 7 that happiness would take a different path. Pedro has schizophrenia.
During the Queen's Park meeting Mary related events of Pedro's illness. In grade 9 Pedro was in a vehicle that was crashed into a pillar during a joyride. The results could have been lethal. He was ordered to undergo a psychiatric assessment, one which he lied to doctors on and walked away with a clean bill of health.
Mary told of how he danced on the roof, cooked in the middle of the night placing the family at risk of fire, tales of attacks by gangs. He moved out but not to a group home where he would be safe, he lived in Toronto's High Park.
Her son can be violent Mary told the audience, entering the family home via the dog door and beating his siblings. He broke into other homes. Neighbours asked them to move.
Her son was not diagnosed as having schizophrenia until he lived at a youth shelter, Eva's Phoenix. Students told a teacher after he was hospitalized that he swallowed metal screws. Her son also ate wood from his bedposts and pennies.
She told how when her son said that he had a cure for AIDS using mini robots his psychiatrist suggested he go to university. He was 17.
He wasn't given admission to a group home. Instead at his family's home he kicked his younger brother in the head giving him a concussion.
He woke up at the YMCA and ran through the streets naked before the police caught him. He was taken to hospital held down by restraints on all of his limbs.
He set fire to his own hair on December 24, 2005. He was discharged from hospital the next day.
Her son told her a row of elevators was a computer hard drive.
Throughout this period her son was never given the proper medical care that he needed Mary told lawmakers as she finished her dialogue.
When Mary looks back the signs of Pedro's disease started in Grade 7 or 8. Those signs though were not easily put into a box marked mental illness. Pedro like many young men was taking risks. During a phone interview Mary talked about Pedro's journey. His journey would take six years before he was properly diagnosed, six long years as his symptoms worsened into a living nightmare.
Mary said, "Pedro was like a lot of other young teenage boys at that age with risk taking. We didn't think he could be mentally ill."
By Grade 9 the family knew something was wrong. Mary's motherly panic button was beginning to go off. She wanted to help her son, a child gifted in science and math, but she quickly learned as a parent she had little rights when it came to the medical care of her own child. In the United States doctors inform parents of their children's medical conditions until the age of 16, that's not the case in Canada, Mary found.
"When kids are 14 their medical records are private. Parents are not informed about mental health issues that could be putting their families in danger. We need to change the rules when it comes to mental health, put aside some of the privacy regulations in order to protect the patient. Implementing a 'next of kin' intermediate measure could save lives."
Mary related that mental illness can be a serious risk to a family. There are many cases where a domestic violent crime happens because the 'criminal' is mentally ill. Those crimes are not separated though in statistics.
One of the key problems Mary faced is that Pedro didn't have a solid diagnosis for years. As his condition worsened the family had tried to get him into group homes but was denied repeatedly. Pedro would spend time instead homeless, with no help from any mental health professional as he walked around living a delusional nightmare. He was at one shelter though that helped him, but it was a stroke of luck. Eva Phoenix Home is a shelter for homeless youth. One of the workers there had a family member who was schizophrenic and noticed that Pedro appeared to have the same illness. The shelter successfully used a tactic to get Pedro tested, they told the young man that he had to have an assessment if he wanted to continue staying at the facility. That push worked and Pedro was taken to hospital for testing.
"When he went into hospital I didn't recognize my son. He was so skinny," she said.
While Pedro was in hospital Mary called his school to get homework for her son so he could keep up with his studies. Pedro's classroom teachers sent back reports that he had been seen swallowing metal screws. It was the first time that Mary knew of this kind of behaviour.
"I know we can't expect our teachers to be social workers but they are on the front lines when it comes to our children. If a teacher sees a problem they should be letting parents know. I found that I wasn't informed about things at the school level. Once a child turns 18 parents don't have a say in their children's education. Before that parents need to know if something is going on in the classroom that is unusual."
Pedro became to take medication for his illness. Mary understands that the fact that Pedro takes his medication if an unusual positive. Many with mental illness do not take their medications because of the side effects.
"Pedro says that his pills takes away his nightmares. Those nightmares are not pleasant," Mary notes.
Taking the medication is a good step but it's a long struggle to get the proper medication. The YMCA incident happened when Pedro's pills ran out and he had trouble because of the holidays obtaining more. Mary said it is possible that he used marijuana to self-medicate at that time.
She added, "Pedro wasn't wearing clothing because he thought that the material was eating his ankles and knees."
The quick release from hospital was during the 2005 Christmas holiday period highlighted a problem in Canada's mental health acts Mary said. Unless a patient shows that they are a danger to themselves while in hospital doctors have to let them go unless the patient has voluntarily been admitted.
The fire incident has been repeated. Pedro set his hair on fire again while in hospital, the difference was that he had been voluntarily admitted during the other incident. It was reported that Pedro was showing another patient the proper way to do the act with a lighter. Lighters, by the way, are allowed at mental hospitals for smokers.
Pedro has been in and out of hospital. Some of the admissions have been voluntary, some because Mary drove him to hospital and some have been when the police have gone to the home. During his admissions Mary has found that there is no structured programming for the patients per say. She noted that the nurses on the wards try to lower the family's expectations of their loved ones.
"Nothing is going to be cured in 3 months is the attitude," Mary said.
Today Pedro is doing well. His current medication is the right one, although it took years to get him the stronger medications because of the current protocols. Pedro is in school at George Brown in the Redirection To Education. The family's goal is for their son to be able to live on his own.
Mary's learned some important lessons along Pedro's path that she shared hoping that it would be helpful for other families.
Tell your children to not smoke marijuana while they are young.
"Marijuana triples the risk of mental health problems for young people. The brain doesn't stop growing until the age of 25. Science has found that the key risk increases when marijuana is smoked at an early age. The amount that is smoked is also a risk factor," Mary said. "Not that I am advocating marijuana but if you're over 25 and smoke marijuana it's different than if you're younger. The risks are not the same. Tell your kids that there are dangers. We don't know how many young people who are mentally ill are using the drug to self medicate or if self medication is a behaviour of the disease."
Mary said parents of mentally ill patients should journal their children's mental health instances.
Mary said, "I have found that those little incidences are not often written down by mental health professionals. It's confusing what is actually put in the official records. Your child may look to be doing well but in reality they are having delusion ideas. By keeping a journal you have a more realistic view of your child's health."
Mary said that there needs to be more lobbying for better medications from the onset of the disease.
She said, "The protocol is to start with the weaker drugs and then to go up to stronger ones if they don't work. Often you have to go to court in order to get those stronger medications. Doctors have to give patients a choice about their medications because of patient choice acts making the patient being the one to decide which medication is the best."