Community of support

Giving parents a community of support

Giving parents a community of support

When their son Austin was diagnosed with autism, Jen and her husband Chris initially felt – as many parents would – lost and anxious.

“At the beginning you’re floundering,” Jen says. “It seems daunting and overwhelming.”

A life-changing diagnosis means coming to terms with a new reality, learning to navigate services in the health, education and social systems,  and meeting the many complex needs of their children can be incredibly taxing, both mentally and physically.

As front-line advocates for their children, it’s easy for parents and other family members to put their own needs last – which can harm their own mental and physical health as well as fray their relationships. Sometimes this is described as caregiver burnout. At Holland Bloorview, our family-centred care approach helps ensure that parents can confidently support their children and coordinate services while practicing self-care and managing all that day-to-day life brings.

Parent Talk is one program that embodies the values of family-centred care. Funded entirely by donors, this program pairs the best of peer support and the expertise of doctors, clinicians and researchers at Holland Bloorview. It helps parents adjust to raising a child with a range of disabilities including autism or cerebral palsy.

Family-to-family workshops provide a safe space where parents can meet, socialize, voice concerns, share resources, and tap into a wealth of lived experience. These two-hour sessions include a topical presentation by an expert, Q&A, and plenty of time to mingle. In 2019 this program will expand to be as convenient as possible to parents, with in-person, online, and “pop-up” unstructured sessions where parents can learn and connect.

Holland Bloorview hosts up to 15 Parent Talk sessions each year, and Jen hasn’t missed any of them over the past three years. “You’re with people who really get you,” she says. Through Parent Talk, Jen says she has learned valuable tips on managing feeding, acceptance, sexuality, sleeping, toilet training, and the use of technology.

"This program helps keep Chris and I on the right path," Jen says, adding that it fostered new friendships as well. “I don’t know what we would do without Parent Talks. It’s given us a sense of safety and peace in what can be an incredibly difficult journey.”

 

 

“I don’t know what we would do without Parent Talks. It’s given us a sense of safety and peace in what can be an incredibly difficult journey.”

“I don’t know what we would do without Parent Talks. It’s given us a sense of safety and peace in what can be an incredibly difficult journey.”

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