I found the prospect of this event very exciting. I’m familiar with Ann Douglas, as her book The Mother of All Baby Books was a regular reference for me when our daughter was a baby. I wasn't sure what to expect from Kristine Barnett, who was speaking about her book The Spark, although I recently heard a similar story about parenting a severely autistic child on NPR's Radiolab (episode title: Juicevose). This event was appropriately hosted by author Jonathan Bennett, who brought his own experience of raising a son with Aspergers’ syndrome.
The event opened with Douglas sharing the opening section of her new book Parenting Through the Storm, which I certainly found encouraging as I am raising a neuro-atypical child. There’s a high probability she’ll be diagnosed with an anxiety disorder, and likely also with ADHD within the first few years of her attending school. As parents, we’ve struggled to learn how to support our daughter through her challenges. Most parenting books have advice that seems to work for other children, but falls short when we're dealing with our own child: she's just that much more emotionally sensitive, anxious, energetic, gregarious and intense.
One of the excerpts that Douglas read from her book that I identified with dealt with the feelings of parenting a neuro-atypical child: “When things were at their worst, I remember feeling helpless and overwhelmed. I felt like a totally incompetent parent. I remember worrying about what would happen to each of my kids. I knew I had to do something to help, but what was that something?” These feelings are familiar to me. In addition, Douglas shared the encouraging conclusion of her book, which details the successes of her children, several of whom are adults living good lives. It was one of the times when hearing someone brag about their children felt good, like the happy ending of a movie.
Kristine Barnett took Douglas’s metaphor of the storm in a beautiful direction. She shared that her experience raising her son Jacob was about learning to accept the storm, so much so that you could dance in it. I found it powerful that Barnett was willing to flip the current educational script from helping children pass grades and tests, to simply celebrating what is great and exciting in her child. Much of what Barnett shared was about letting go of traditional definitions of learning for children who are different. She shared an example of going out late at night and watching the stars from the hood of her car while eating popsicles, how this bonding experience had no purpose other than to just be something to enjoy and celebrate, but nonetheless learning took place.
Douglas’s book is purposeful, not quite as “how-to” as some of her other books, but focused on the practical realities of parenting a neuro-atypical child. She shared critical information on everything from getting a diagnosis and dealing with treatment, to how these things will affect you, your child and your family and what to do about it. Douglas believes in taking purposeful action to support your child, because there is no “mental-health fairy godmother” who will fix everything, and our supposed universal health-care system in Canada stops short of supporting people with mental health or developmental challenges. Barnett’s book is a great companion because it is focused, albeit indirectly, on the question of “who do you want to be?” while raising a child: what kind of parent do you want to be, and what kind of impact do you want to have on your child?
It is clear to me that Barnett fully embodies courageous parenting. She experiences fears and anxieties like all parents, but has chosen not to make decisions based on these fears. Instead, Barnett's focus is on the joy that is available when children aren't limited by "challenges”. For this, I deeply admire her. Barnett deserves a lot of credit for who she has become through the journey of raising her son. Barnett’s metaphor, dancing in the storm, captured something beautiful – that she was willing to experience the vulnerability of having a different child. Because rather than focusing on the limits of her child, Barnett focuses her effort on loving her child fiercely. At one point in the presentation, she made the statement that “by dancing in the storm, you can even change the storm.” Although I’m not sure she changed the storm, but her willingness to dance in the storm has made her far more brave and resilient which is hugely helpful as she leads Jacob’s Place, an organization that serves the autism community in Indiana.
This was a fascinating presentation from both of these amazing women. Both Douglas and Barnett have great courage developed through challenging circumstances and experiences. They bravely shared what they have learned with those of us who need some extra support. I look forward to reading these two books as reference, and hopefully forming different connections with the community of parents who know how exhausting and difficult it can be to parent a child with a mental health, neurodevelopmental or behavioural challenge. Douglas and Barnett each share the hopeful sentiment that if you are experiencing those same feelings and emotions, you are not alone.