Posted by Lisa Kanigsberg, a research assistant in the Autism Research Centre at Toronto’s Holland Bloorview Kids Rehabilitation Hospital. The center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).
The idea came from our ATN Family Advisory Board, which at the time consisted of our two superstar founding members Philippa Howell and Brenda Relf. Wouldn’t it be great for our parents to meet once a month to talk about an autism-related topic of particular interest? We envisioned parents gathering, sharing and gaining knowledge from each other as well as our healthcare specialists. Would people come? What if we could provide child care? We would call it “Autism Treatment Network Parent Talks: Autism Spectrum Disorder.” We just needed a little help to make it happen.
In 2013, our Toronto ATN Family Advisory Board applied for an Autism Speaks ATN/AIRP Training and Dissemination grant to run a pilot series.
The Family Resource Centre at Holland Bloorview Kids Rehabilitation Hospital provided a venue and childcare to help make these sessions accessible to as many parents as possible.
Each of the meetings in our pilot series featured an expert speaking on an autism-related health and treatment topic. Following the talk we invited parents to share experiences and ideas related to supporting their children. Every month, they enriched these talks with their mutual support and ideas.
By the end of our pilot series, we could report that the talks and discussions were both well attended and enthusiastically received. Based on this success, we applied to the Holland Bloorview Foundation for funding to continue the project through 2014.
The foundation had previously funded “Parent Talks” for the families of in-patients. So its staff recognized the benefits of the format. And they were impressed by the numbers and feedback from parents who attended the pilot sessions funded by our ATN/AIRP grant.
Again, the talks proved popular. In response, the Holland Bloorview’s Family Resource Centre formally adopted our “Parent Talks – ASD” In the fall of 2014 – hiring family-centered care specialist Lori Beesley, to organize them.
Since 2014, Holland Bloorview Kids Rehabilitation Hospital has hosted 13 more autism parent talks. We continue to open all of our presentations – free of charge – to all parents and caregivers of children with autism. More than 300 have attended and benefited from the expertise of our speakers and veteran parents.
After each session, we ask parents to complete anonymous satisfaction surveys. Their responses have continued to be overwhelmingly positive.
Our parents also provide a tremendous amount of input. They guide us with suggested future topics and other ways to improve the program. For example, parents reported that there was not enough time allocated to ask questions and talk to each other. So we extended child care by a half hour to allow more time for these important exchanges. We also added a quarterly “Parent Talk & Share” session.
Most exciting, I think, is the continued growth we’ve seen in parent participation since that first meeting made possible by our ATN/AIRP grant. A growing number of parents have volunteered to lead presentations. They’re also volunteering their expertise in helping “newbie” parents navigate the complexities of the autism care system. They’ve become active advocates in the autism community – helping each parent meet their children’s life challenges equipped with wisdom, resources and strategies to ensure greater success.
I’d like to give you a sampling of the topics we’ve tackled in “Parent Talks – ASD.” We hope they’ll serve as inspiration to others:
* Literacy and ASD: Supporting Elementary Level Children with ASD in Comprehension and Reading Strategies at Home
* Encouraging Communication and Speech in Young Children with ASD and considering alternative forms of Communication
* Resiliency: Coping with your Child’s Diagnosis of ASD (parent-led talk)
* Getting supports for your exceptional child at school-JK to Grade3 (parent-led talk)
* Potty Talk: Toileting and ASD
* Fostering Knowledge and Safe Sexual Experiences in High Functioning Adolescents and Adults with ASD
* Feeding Challenges and ASD: Setting the Table for Success!
* Sleep Deprived? Practical Strategies for Improving Sleep in Children with ASD.
* Stressed Out! A discussion of support, coping and self-care.
* Is ASD Genetic?
* Building a Community/Network for children with ASD.
* Fostering Early Social Communication and Play (0-5years)
* Parents: Securing the future – a discussion about support and planning for your child’s future (parent-led talk)
* Behaviors and Technology: Coping Mechanisms
In closing – and with thanks to the Autism Speaks ATN/AIRP for supporting this program – I’d like to leave you with some samples of what our parents have said about our program:
“The most valuable part of the evening was the variety of input from the parents and facilitators.”
“Great overview-loved that the presenter was a parent of a child with ASD”
“Most helpful were the ideas and the feeling we are all in this together”
“I find it valuable that the facilitator has experience with special needs children – her own!”
“Amazing tips that can easily adapted for home.”
“Others live challenging lives and can remain hopeful and resilient. Good to know we are not alone.”
“I learned that I should focus on what my son can do, not on what he cannot do.”