By: Denise D. Resnik, Founder & President/CEO, First Place AZ/First Place Global, SARRC Co-Founder and Matt’s Mom
I know it’s neither advisable nor helpful to lean into the “would have, could have, should have” mindset. But for some reason, I couldn’t resist going there during the Southwest Autism Research & Resource Center (SARRC) 28th Annual Community Breakfast this month.
Hope was present in every personal testimonial, proudly shared accomplishment, data point, new Community School location—and in every person who filled the room at the Arizona Biltmore.
It is also omnipresent in this community known as “the most autism-friendly city in the world,” as named by PBS NewsHour. And for good reason.
I watched 1,500 people pour into the ballroom, all marveling at the videos and presentations about kids of all ages making remarkable progress—and SARRC’s unwavering commitment to putting support within reach of every Arizonan.
While hopeful and joy filled, these annual breakfasts can also be emotional as we listen to how the autism journey is filled with struggles that include long days and even longer nights, months and years.
This year, I became a puddle of tears after Luke’s mom, Margot Blair, spoke. She described herself as the mother who sat in the back of the room just two years prior, feeling lost about how to navigate her son’s journey with autism—and her own.
Margot’s story took my breath away. I understood firsthand what she was saying and rejoiced in seeing Luke’s significant strides (and cuteness!). The stark reminder of being in that very dark place was all too familiar and frightening: not knowing where to turn, whom to talk to, what to do—but knowing we needed to do something.
I know that “look in the mirror” pattern Margot referenced—questioning whether there was something I did, didn’t do or needed to do better.
Filled with emotion, I jumped from my seat as she exited the stage to give her a hug, congratulate her on Luke’s promising future and whisper in her ear, “I don’t know you, but I do.”
Back in 1993 when Matt was diagnosed with autism, I didn’t feel adequate as his mom. There were no answers, no SARRC, no internet. Instead, we turned our home into Matt’s therapy headquarters, commandeering nearly every room in the house, some of which contained evidence of Matt’s autism: chewed-up leather couches, baseboards pulling away from the walls due to flooding from stopped-up toilets and toys where furniture should go.
We seldom watched TV as a family. It was Matt’s videos in one room while our daughter Ally watched programs with her dad, including every episode of “West Wing” in another as he explained what it means to live in a healthy democracy.
Without clinical experience, and too often not knowing what to do, I started doing what I did know how to do: Get really smart people around the table and start building community. That included co-founding SARRC in 1997 and founding First Place AZ in 2012. Together with fellow SARRC founders Drs. Raun Melmed and Cindy Schneider, we turned questions from a support group of moms (and soon dads) into big ideas. We transformed our offices, homes and cars into hubs for resources, research and support.
The goal of ensuring SARRC’s original mission of “supporting individuals with autism and their families throughout their lifetimes” constantly fuels the work of First Place–Phoenix and First Place Global on our aligned missions. And hearing the bravery and dedication in the voices of other parents fuels my own commitment.
Thank you, SARRC, First Place and my bright and shining North Star Matt for continuing to remind us that each of us has a role to play in building a connected community through family, friends, colleagues and a shared, hopeful vision about our future.
And thank you, Margot, for loving Luke as you do and placing a world of possibilities in his future.