When Syona was first diagnosed with cerebral palsy I did what most parents do—I turned to Google. However, I wasn’t searching for a definition of my daughter’s diagnosis. I already knew what cerebral palsy was. Instead, I searched what it was like to raise a child with special needs.
One of the first resources I discovered was the BLOOM blog, headed by editor Louise Kinross of the Holland Bloorview Kids Rehabilitation Hospital in Toronto. It immediately made me feel less alone and connected me with an online community of parents in a similar situation to my own. BLOOM includes a regularly updated blog, a print magazine, speaker series and monthly newsletters. It’s a place where parents of kids with disabilities can be heard and can catch up on the latest clinical and research advances.
Since 1999, Kinross has given a voice to parents raising children with disabilities. In this Q&A, she talks about why bringing special needs parenting to the attention of mainstream media is important:
How did you get involved with BLOOM?
I joined Holland Bloorview’s communications team back in 1999. My son Ben, who has a rare genetic condition, was four at the time. My background is in journalism so I jumped at the opportunity to combine work with my fascination for disability issues, which was sparked by Ben’s birth.
How do you generate story ideas for BLOOM?
I track social media and mainstream stories related to disability and parenting. I’m always on Facebook and Twitter and have Google alerts for “child disability” and “disability research.” I reach out to parent bloggers who may want to guest write for BLOOM and to our hospital’s family leaders and staff. I’m always looking for new ideas on how to write about the joys and challenges of parenting children with disabilities.
How do you think BLOOM impacts readers?
I hope our firsthand stories and professional advice helps parents feel less alone and more empowered. I hope they feel supported by a community that ‘gets’ their experience and encourages them to celebrate their child. I hope BLOOM gives professionals a window into how it feels to parent a child with disability in a time when we still face stigma and isolation.
What’s next for BLOOM?
Two things. Until Dec. 31, 2014, Canadian parents David and Lynn Coriat are matching donations made to BLOOM. Readers can support us by going to www.hollandbloorview.ca/helpbloom. BLOOM is provided free-of-charge to families and supported by donations. In terms of content, we’re adding more candid stories from clinicians and researchers about what it means to work in children’s rehab. The goal is to build understanding and partnership between parents and professionals.
What difference has BLOOM made in readers’ lives?
Many parents speak about how our stories have taught them to reflect on what’s truly important in their child’s life. I’ve also heard about families who’ve learned something practical that changed their child’s life. Here’s one reader’s comment: “I feed my daughter in what most healthcare professionals consider an unconventional way because of a family story I read in BLOOM before my daughter’s g-tube surgery. That story opened my eyes to a feeding option [blended real food as opposed to formula] that I didn’t know existed.”
What are some of your favourite parenting blogs and resources?
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.
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