Real-world tips

These tips were developed with input from parents of children who have physical and developmental disabilities, as well as complex medical problems and autism.

What is respite?

It’s an opportunity for your child to enjoy activities with others at home or in the community while you get a much-needed break and re-energize.

Respite is not one place or thing. It can be a worker taking your child to the park, pizza place, exercise club or zoo. It can be a worker, family member or friend cooking with your child at home or shooting hoops in the driveway.

It can be an arts program you drop your child off at in the community, a day program or an overnight stay in a hospital. Respite works best when you build strong relationships between your child and family and the respite worker or community program.

How do you find respite workers?

Be on the lookout for people who naturally connect with your child. It could be an assistant at school, a swim instructor, a camp counsellor, a retired teacher or a university student who wants to learn a skill like sign language. When you visit your child’s rehab hospital or attend a workshop, network with other parents. Find out who they use.

Visit your local community centre, coffee shop, college, place of worship or library and talk to people. You never know where you may find a caring person with skills who can connect with your child. Post an ad at high schools and universities for students who may want experience. Register with www.respiteservices.com to take advantage of their worker database. Ask your children’s treatment centre for a list of formal respite programs. Some parents have found excellent workers through Craigslist. Remember, you have to interview and screen people no matter where you source them.

Respite workers don’t stay forever, so keep networking to ensure you have the support you need over time.

What do you look for in respite workers?

There is no ‘perfect’ respite worker. Look for someone who connects well with your child and has interests or skills that can benefit your child. Parents recruit workers for different roles. Perhaps you want a male worker who can play basketball with your teenage son. Maybe your child enjoys nature and you find someone who loves to garden. Look for people who are motivated to learn skills in areas that meet your child’s needs. For example, a student who wants to learn sign language or someone who’s a whiz at technology and enjoys programming your child’s voice device.

How do you keep respite workers?

Invest time in your worker. Initially be present so that you can model what works best with your child. Be open to questions. Make working with your family fun, rewarding and convenient. Create learning opportunities that fit with your worker’s interests (e.g. a student who wants to be a physiotherapist attends therapy with your child).

When it’s convenient, offer to pick your worker up or drive them home. Recognize your worker and remember little things, like birthdays. Make sure your worker is comfortable with the hourly rate you pay and feels valued. Some respite arrangements may not involve money. For example, one dad pays gas money for a friend to visit and read with his daughter in hospital. Another provides workers with a laptop or Blackberry during visits. The child and worker have fun with the technology and send photos of their activities to the parent. One mom takes advantage of a Sunday morning respite program run by students from a Jewish high school.

Never take your respite worker for granted!

How do you get funding for respite?

Ask the social worker at your children’s treatment centre to help you fill out government forms such as Special Services at Home. Your social worker can also tell you about charitable foundations that fund respite.

Where can I learn more?

Visit www.respiteservices.com or the Family Resource Centre at Holland Bloorview. Or ask the social worker at your children’s rehab centre.

What parents say

“Respite is about my boys having fun, getting to go out and explore and be happy and do things with other people.”

“I look at respite as a day off for a parent to do the things they couldn’t do before. I may attend an appointment. It could be having a coffee and reading the paper. You’re able to relax your mind and re-energize. It takes away the constant worry.”

“It can be hard to trust someone else. You think no one can take care of your child the way you do. But it’s important to let go. You want to be healthy for your child over the long term. If you don’t take respite, you burn out.”

“You have to invest time in your workers. It’s not ‘here you are, take my kid.’ You spend time building a relationship and giving them the tools to be successful.”

“I want my child to be visible in the community, not isolated, and respite workers get her out there.”