When I first heard the word "autism" from our doctor, I knew my family was embarking on an epic journey, one we weren't packed for. It's a punch to the gut you never forget, and one that still makes me nauseous when I remember the feeling of fear and uncertainty that came to replace all the typical hopes and dreams we had for our son. In a way, it felt like we had to mourn the loss of a son we thought we had and learn about a new child that no one had a roadmap for.
At 2, our Zane was so connected, hitting all of his milestones. Then, as if overnight, he began to regress, and slowly we watched his brilliant mind become trapped by a body working against him. Zane is 11 now, and it's been 9 years since his diagnosis. Autism Awareness Month is every month for our family, but every April I like to reflect on the year past and the year ahead.
Since Zane's diagnosis, the autism rate has jumped to one in 54 babies born today. We had to learn about this mysterious diagnosis where each child is uniquely affected by repetition, social challenges, and communication in a range of severity. While we haven't missed a beat when it comes to supporting him with therapies, and we've made hard-fought progress . . . ultimately it's a marathon, not a sprint. Amid our search, life kept moving. In the last nine years, I grew Happy Family Organics into the market leader for organic baby food in the US, sold the company, and have since started my second venture, Healthynest.
My personal mission in life is to protect and enrich the health of babies, especially given our own experience. With Happy Family Organics, I set out to change the trajectory of children's health with accessible organic food. Since having Zane and then our daughter Asha, I've also learned so much about how to support mothers and babies in that special early window of life when babies' brains are developing. Our search to help Zane has connected me with the brightest minds in pediatrics and neuroscience, and if there's one central theme that has been resoundingly clear, it's that a baby's brain is extremely sensitive to their environment - which became the inspiration for Healthynest.
Healthynest was set to launch in March 2020, then boom, COVID happened. Like everyone, my family was forced into isolation, cut off from our routines and resources that Zane relied so heavily on. More than your average family, special needs families depend heavily on their network of support across schools, therapists, caregivers, and activities. Overnight, everything disappeared, and it was devastating. Zane lost all sense of grounding in his life besides me and my husband Joe. He regressed and started engaging in self-injurious and obsessive behaviors as a way of showing his pain and fear. It was the worst time of our life since the diagnosis.
It feels like always being at war – fearful of what will happen every day when he's not near us, wondering if he will become independent, if he'll be able to communicate more, if he'll ever have a true friend. It's a constant fear of the future, and I've had to learn to accept this as my reality. Some days are filled with tears and sadness, and some days are filled with brightness when we see a ray of hope in the dark. Being a special-needs mom makes you a forever advocate for a child who needs you to be their voice. It's a privilege, but the responsibility is sometimes more than I ever imagined I could bear.
We've all learned a lot from COVID. While I would have preferred that we had avoided the heartbreak it brought, much like when we first received a diagnosis for our son, it ultimately led to my husband and I to reset our values. It turned out that our definitions of "success, perfection, or normal" for our children and our own lives were a tad hollow and narrow-minded - Zane has taught us to stop with the judging.
I still get scared for him, sure, but I also get to revel in the beauty of Zane, in his uniqueness in the day-to-day amid the chaos. He's so special, and yes, so challenging, but so, so special; like a magical creature that speaks with his eyes and smiles knowingly when you least expect it. It would be a lost opportunity to not use this pandemic-induced inflection point during Autism Awareness Month to examine how we think about success in our lives as a family. Maybe we parents, who have the highest of expectations for the outcomes of our children, can also learn to breathe and live and laugh in the special, everyday moments as they wash over us. And then maybe our kids will have the opportunity to learn from us that being a kindhearted person with the ability to love anyone and everyone might be the highest form of success that there is.
COVID has reminded me how important the small moments with our children are for their development. There is no replacement for the connection you have with your child, and there's no one better to help them develop into who they can become. Asha likes my jokes better than anyone else's, and Zane knows my arms are the safest space to quell his anxiety. Being a CEO of a startup and working through the pandemic are a cakewalk compared to the role of CEO of Zane's life, but there's nothing more important in the world to me to see him make progress and reach his highest potential.
It's the small moments of connection that matter, the routine of our day-to-day lives that we gloss over as we're rushing to what's next that are ingrained. It's those moments that remind our children that they are safe, they are loved, and they have the freedom to explore and be curious.
The world appears to be slowly emerging from the grip of COVID, and there's still a long way to go. But before we all hurry to resume the lives we once knew, I hope we can remember that the biggest gift we give our children is our presence, our attention, and our willingness to connect, not for a preferred outcome but for the joy of being in the moment.