When my husband David and I were gearing up to be parents, we had high hopes for the future—neither of us had faced significant adversity in our lives and naively assumed our children’s lives would mirror the same successful pattern as ours—but we had on rose-colored glasses. Finding out that we had two children with multiple, complex mental health and neurodevelopmental disorders, including a son with autism, turned our lives upside down.
It sent us on a rollercoaster journey, which still affects us today. But through the struggles, there have been bright moments that taught us important life lessons about parenting our children. When it comes to caring for autistic children, we can face seemingly endless highs and lows. To help ease the journey, here are two key insights from my book, Hold on Tight:
Remember: you know your child better than anyone else. If you think something is wrong, it most likely is. While it's important to listen to health care, parenting and education experts, if what they say doesn’t resonate with you, keep looking.
David and I learned that many doctors aren't trained or qualified to deal with autism and neurodevelopmental disorders. When our son Andrew was a baby, he cried excessively, flapped his arms and had difficulty maintaining eye contact. Our instincts told us that something wasn’t right—we stayed up all hours talking about it. We read a myriad of parenting books and consulted our doctor, but he kept discounting our concerns.
As Andrew got older, our doctor said that on top of being social and outgoing, Andrew had learned to read and write with his peers. He claimed Andrew was a sensitive child under a bit of stress. One afternoon, I remember leaving his office feeling helpless, even questioning whether I was the problem.
As I write in Hold on Tight: “As new parents, we were inexperienced and didn’t know what we were doing. The constant rebuffs perplexed me, made me despondent and took their toll on my confidence. It was only after a few years -- although it seemed like an eternity at the time -- that I came to understand that our doctor was well-meaning but in no position to help us.”
It’s important to be tenacious. This does not mean being overly aggressive, but when you are not comfortable with what one professional tells you, seek a second opinion—or a third if needed.
Knowledge is power! It's not only key to understanding certain topics, but it helps us find the right services and support to become effective advocates for our children.
Once Andrew was diagnosed with autism, I read everything that I could about it. I spent days in libraries and online— I made tons of calls and spoke with as many professionals, associations and parents of other autistic children as I could. Attending parent support groups became a lifeline for me. It was so helpful and such a relief to listen to other caregivers give their advice and pick their brains. We could be open, share our concerns and fears, and laugh about certain everyday situations.
As parents, we never completely stop learning. There are always new findings, treatments, medications and therapeutic approaches. It’s important to stay current—while it doesn’t require the same intensity as our initial research (unless critical information comes up), it keeps us educated and up-to-date.
An essential part of my research has always looked into the benefits and risks of each medication a child's doctor prescribes. Caregivers are responsible for understanding their child’s medications, weighing the risks against the benefits and observing changes in their behavior.
While the internet is a valuable source of research, it's important to verify information with experts and learn what to discount or ignore. The appalling stories some people write and the promotion of certain alternative treatments can be both alluring and scary. I'm a strong believer in trying anything that may help my children, but several “treatments” online not only make no sense to me but can be harmful—at least to my children.
But alas, it's important to recognize that research can be never-ending. I've learned to acknowledge when I've done my best and need to take a breather.
While it can be overwhelming to identify the right help for your children, it's important to be persistent until you find the answers you are looking for. Don't forget: there is help, hope, and you are not alone.
Jan Stewart is a highly regarded mental health and neurodiversity advocate and Chair of Kerry’s Place Autism Services, Canada’s largest autism services provider. Her brutally honest memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness describes her emotional roller coaster story parenting two children with multiple mental health and neurodevelopmental disorders.
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