Thursday, July 8, 2010

Custody or services?

Stacey Berton of Kitchener, Ont. is a single parent raising Wesley, 9 (above), who has autism and symptoms of bipolar disorder. This past spring, Wesley's aggression increased to the point that he was hurting himself and others. "The school couldn't manage it and I was covered in bruises and there was no help," Stacey says. Twice in June, Wesley was hospitalized in the child psychiatric ward at Grand River Hospital. Stacey looked for a specialized day program that would meet his needs but none existed. She was told her only alternative was to sign over temporary custody of Wesley to Child and Family Services so that he could be fast-tracked into Kidslink, a residential program for children with mental-health issues. A week after being admitted, Stacey learned Wesley would have to be moved because Kidslink couldn’t maintain the one-to-one support he needed.
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.


I don't have much insight into this, all I can say is that sounds terrifying. I couldn't imagine having to give custody to Child and Family Services just to get access to the support needed. I hope you guys can come up with something that works for your kids.

Stacey, how difficult this must be for you. And how limited the resources. I am happy to "friend" you on Facebook and help in some small way --

When I called CPRI years ago they told me "we don't have a behavioural/social skills program, but we'll come and tell you how you're doing it wrong".

So.... I did it myself b/c that's useless.

I know there are many parents that have put their autistic children into group homes and have had to move to be near them. ALSO, doing so, make certain you do not run the risk of losing custody after your year is up. The Ombudsman went after them, McGuinty (useless) stopped it for a few parents and then reinstated it.

My daughter is mentally handicapped and became very aggressive at age 11. I think it's puberty that precipitated her aggression. She's eighteen now and is on two anti-psychotics to deal with her aggression. They work but leave her quite tired. I'm hoping to wean her off them when she hits her mid twenties.

I've never found any good resources to deal with this problem. There is a woman in England though who knows a lot about this. Her web site is

Her email address is on her site and I vaguely recall an English place that deals exclusively with challenging behaviors. But you can ask her.

I don't think you can combine any therapy and separate the child from the parents. What she is advocating is just basic common sense. What is incredible is how they think they can help a child in one area, ignoring the basic support needs every child has for the parent(s). Family always helps. Integration is key. These organizations need to get more efficient so they can work in smaller populations. Even if you look at it from just a purely economic standpoint, the payback from a lifetime of taxes from work will pay for it. Productive people are good for the country. Insightful people see abilities that can be used by the patient later for work. If the parent(s) aren't worried all the time about their child they will make more money generating more taxable income. Mental health is crucial. But we also must try different environments to make sure this cannot help: Examine your home/area for air/water/food pollutants. Processed food is a pollutant! It may not effect your neighbor's kid but if it affects your kid, isn't it worth it to replace it with real, live, natural food? No, it doesn't cost much more if you are knowledgeable. Many foods can be grown indoors for almost free.