Rooted is all about the people, places, and events, that make us proud to call our community home.
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It is not often we see one act directly leading to major changes that have a resounding effect on how places and people are governed. Michelle Jackett can lay claim to a change that resulted from a family crisis but led to an outcome that was better for everyone involved.
“I’m so glad that I fought the fight I did. As hard as it was personally, for my children, and for my marriage at the time, I look at my daughter now and I see a whole person who has a whole life and a circle of people that love her. That’s what any mom wants for their kids.”
Jackett detailed this journey in an episode of “To North Bay with Love” with Lisa Boivin.
The fight that Jackett fought was getting her daughter the appropriate care she needed. Jackett’s daughter Robyn was diagnosed with autism when she was under two years old and “it is severe, her needs are incredibly high, she needs a lot of daily support.”
Jacket has three children, 22-year-old twin daughters and an 18-year-old son. She says the reason they were able to diagnose Robin so early was because she was not meeting the same development milestones as her sister and Jackett had worked as a respite worker at Community Living, many times working with children with autism.
“There was one day where I saw my daughter doing something and it reminded me of a specific individual that I worked with when I was younger and I thought, ‘I think something more is going on here’ and that's what prompted me to start asking questions and start going to doctors.”
As Robin got older, Jackett says her behavioural needs were increasing.
“She had a placement and somewhere to live, but the organization she was with felt they could no longer support her in the placement because those needs were escalating. She was 14 when this went down. At the age of 11, she started developing self-injury behaviours and aggressive behaviours.”
Jackett says the lack of language is a key factor when it comes to those behavioural challenges.
“I think that when you have a child with no functional language to tell you what they want or what they don’t want, it makes things incredibly difficult. If my daughter has a headache, or a toothache, or is just grumpy, it is like a science experiment trying to figure that out. I think that the biggest misconception about autism is that people think the behaviour is a symptom of autism, and it's not a symptom of autism, it's a symptom of a deficit in communication. They cannot advocate for themselves or express themselves and I have a lot of empathy in that regard.”
Jackett says unfortunately for her daughter, the right support wasn’t in place in our community.
“It’s not that anyone is being negligent, it's that most kids with autism have different needs than what the caregivers typically see. So, when extreme aggression and extreme self-injury behaviours occur, they aren’t commonly experienced by medical professionals and support teams. She was on a lot of drugs to try to control those behaviours but I think those drugs made those behaviours worse,” says Jackett.
“Eventually she ended up hospital surfing, she ended up homeless and it was very, very difficult on our family and that started a very public campaign on my part, which was necessary because it resulted in a great quality of life for her and she has a wonderful home with wonderful support now, but it was a very scary and traumatic time in my life where I had to make some decisions I never imagined having to make as a mom.”
Jackett says she had to tell the caregivers she would not come back and get Robyn, forcing a crisis into their hands.
“If I stepped in and filled any of those gaps then there would be no need to act on their part. There would be no need to resolve those issues because Robyn would have someone to take care of that. The behaviour had escalated to the point where it was dangerous for everyone, including Robyn.”
Jackett says, “I had a lot of guilt putting her in. I never thought in a million years that I would be thinking of placing my child in a group home at the age of 14. I knew that would happen at some point in her life, but I thought it would happen much later. Robins' quality of life was drastically reducing, the longer she stayed at her home.”
After a lot of advocating and community protesting and even letters that went up to the Prime Minister's Office, Jackett says Community Living and both ministries came together and decided to fund a home.
“Robin is housed at Robyn's Place Children’s Therapeutic Treatment Centre. She has aged out of that program, but she’s still in the same house. She loves the house and her workers, and she’s got a great life. I go and see her all the time and I feel safe, and my kids have great relationships with her, and she comes and visits me in my house, something I never thought would be possible after the crisis we went through.”
Jackett also has an 18-year-old son, Max, who was diagnosed at 15 months.
“When I realized the symptoms were there, in large part because we already had a child with autism and it has a genetic link, I placed them in a research study group where we could track his behaviour early.”
Jackett says Max is verbal, but his comprehension is a little bit behind and he doesn't always have the words he needs to say to accurately express himself in the timeline he needs them.
“One of the things I think I struggle with, especially as my kids are becoming adults in the adult world, is the way society views them and the value they hold in their own society,” says Jackett.
“I'm not pleased with the way it is right now. I think it's better than it's ever been, but there's a long way to go when we talk about acceptance, there is still a conversation that should be being had all the time. We don't support adults with neurodivergence or intellectual disabilities in a way they can be successful in their adult lives. The underlying message is that they are not valuable, they are less than.”
Jackett points to the $2,000 a month people received through CERB during the COVID-19 pandemic – but says people on ODSP (The Ontario Disability Support Program) only receive $900 a month.
“They felt that the average citizen needed that $2,000 to get by, but for people on ODSP they get $900 to cover everything, transportation, food, housing. The only difference is their mental disability, and money speaks to value. That is a very blatant example of how society just doesn’t believe that someone like my daughter or my son deserves the same things in life.”
Jackett says that’s why these conversations need to happen.
“It’s very easy to sustain those kinds of systems because the people who need to advocate don’t have a voice. They can’t speak up for themselves, they require other people to speak up and draw attention to it. If we did that to any other minority group and trap them into poverty, and let's face it, we do that already, but those groups at least have the means to say more about it. It won’t change until collectively we take a step forward and say more needs to be done in guaranteeing how much adults with neurodivergence or intellectual disabilities can have to sustain a better life.”
Jackett says she is always open to talking and advocating for this and hopes the conversation grows and continues to see positive outcomes.
“Advocating for Robyn was one of the best things I've ever done in my life and I’m happy to talk about her and Max anytime,” she says.
“I don’t think there’s anything wrong with my kids and while I wish things were easier for them, I don’t look at my kids and think ‘I wish they didn’t have autism,’ I’m not embarrassed of it. I’m not ashamed of it. They bring so many incredible things to this world. My son is the light of my life, and he makes me laugh daily. He’s so wonderful and so joyful and wakes up every day and to him, life is great. So, I will always welcome these conversations.”
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