BLOOM: Tell us about Wesley.
Stacey Berton: Wesley is verbal and bright and eccentric. He knows every make and model and colour of vehicles. He loves riding bikes and colouring and has a great sense of humour. He also has terrible anxiety and doesn’t under social concepts. He’s afraid of many things: that his Mom might be taken, or our van might be taken, or our home might be taken.
BLOOM: When was Wesley diagnosed and what kind of intervention has he had?
Stacey Berton: He was diagnosed with autism at the age of three. I quickly discovered that early intervention was necessary, but the therapies were inaccessible due to their high cost and limited government funding. Like many parents, I gave up work to try to become adept at what would help my son. I worked with Wesley and I drove him from one therapy to another. Our family fell apart with the financial strain. I moved with Wesley from a rural area to Kitchener where I thought we would have more access to support. But I’m living in poverty and still navigating the red tape.
BLOOM: What precipitated the current crisis you are in with Wesley?
Stacey Berton: He was very functional at school and plans were being made for him to be fully integrated in a regular classroom without an aid next year. Then in the spring, he became very aggressive. He had rages and mood swings and acted out violently. I love my son fiercely but I couldn’t stop him. He’s very strong and I started to have bruises on my body. Then he began hitting other kids and teachers and the strategies we had in place at school weren’t working. On two occasions in June I had to take him to the child psychiatric ward at the hospital. I met with Developmental Access Services to try to find a day program where Wesley’s needs could be met and he could come home at night to me and sleep in his own bed. I was told that these programs don’t exist. The only option to get him into a residential placement – because of the wait lists – was to sign over temporary custody to Child and Family Services.
BLOOM: How did you feel about signing over temporary custody?
Stacey Berton: It’s the most painful thing I’ve ever had to do. I did it because I believed that it would put Wesley in the hands of organizations, alongside me, and we would all have a responsibility to getting Wesley the care he needs. They found him a place at Kidslink, which is a residential program for kids with mental-health issues. The child psychiatrist at the hospital supported this placement. Wesley had gone there once a month for respite days so was familiar with it. They have a water park, a place to ride bikes, a gymnasium and a classroom program with a small teacher-student ratio.
BLOOM: What has happened since Wesley went to Kidslink two weeks ago?
Stacey Berton: I brought him to stay with his father for the weekend and both his father and I noticed a decrease in aggression and he was asking to go back to Kidslink. Then I had a call from Kidslink to let me know that that he was getting worse and they were planning to move him to a group home for children with autism. They had been discussing this with Child and Family Services the week before but hadn’t notified me.
BLOOM: Why do they feel that Wesley needs to be moved?
Stacey Berton: They say they don’t have the funds to continue to provide Wesley with a one-on-one worker. It’s not an issue of Wesley’s aggression, it’s money. I was told that in other cases they’ve had parents pay for the one-on-one worker. And they say they can’t meet his needs based on autism, but they put him in knowing what his needs were. Moving a child to another place would be hard on any child but Wesley is very fragile and anxious. The group homes don’t have any more resources or access to funding than Kidslink, but they just want to move him along. Bouncing Wesley from one place to another will be very traumatic for him.
BLOOM: I know you’ve started a Facebook group called Please Help Wesley. What do you hope to achieve through this group?
Stacey Berton: My goal is to advocate for a day program where we can have our children’s needs met and they can go home to their families at night. It needs to be a year-round program and to offer therapies and schooling onsite. I’ve already made contact with four families who have situations very similar to ours. We’re hoping to meet and find ways to fundraise for this kind of program.