A Portrait of Care:

Being 'Mom' to Two Teen Boys with Special Needs
Part Three: Self-care is also about their care
Part One . Part Two . Part Three . Part Four


Martin and Jackie Tot have been married for 23 years. Martin recently found their engagement photo and placed it prominently on their sideboard. 

London, ON. - The results of Jackie’s tenacity are clear. James and Mark have grown into young men who ski, kayak and swim and who love to socialize. Both were born with hereditary cerebellar ataxia, a rare genetic disorder. “I’ve put them in everything I can find that will challenge them, and help them, and keep them involved," says their mom Jackie who was recently recognized with a HEROES IN THE HOME award for her undying commitment to the boys.

Jackie has used the services provided by Community Care Access Centres (CCAC) since Mark and James were toddlers. The Special Services at Home program provides an annual grant to help pay for support workers because the two brothers can’t be left alone. “There’s a lot of good stuff. I even have a man now come and shower them twice a week from CCAC, which really helps because it’s hard on every body’s back to try and bathe them.”

But where programs are lacking, Jackie tries to do what she can to be a catalyst for change. She is currently working through an issue with one agency in hopes of having them alter their process and criteria. “There needs to be an easier way and that’s why I’m getting vocal about this because I don’t want the next mom to come along who’s ready to pull her hair out and go why can’t I find money for a wheelchair or why can’t I find funding for whatever.

Although Jackie has made the most of the services available in the community there are still times when she gets overwhelmed. But when that feeling strikes she now recognizes that it’s usually because she hasn’t been taking care of herself. “You have to take a break because if you don’t refuel yourself you haven’t got anything to give…even if I go for a walk, for me I just feel so much better. Or if I do something like watch Oprah or read a book, or Martin and I go out for coffee just to refuel myself then I’m a much better mom.”

She remembers the first time that she enrolled Mark and James in an overnight respite program on the advice of a friend who recommended that Jackie send the boys to Bloorview Kids Rehab, a rehabiltation hospital,during an extended Christmas break. “She said: ‘You need to send Mark and James here.’ I can remember telling her, ‘I can’t send my babies away!’” It was during that time that she realized longer breaks were essential if she wanted to remain as the boys’ primary caregiver over a long period of time. Now she says, while laughing, “I can’t wait for them to go to Bloorview.”

Join us on Thursday, March 11, 2010 for Part Four, the final part of our series as Jackie's attention turns to the future.

Part One . Part Two . Part Three . Part Four

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