Lara Stolman, filmmaker, journalist and mom to a son with autism, recently visited First Place–Phoenix and brought her award-winning documentary “Swim Team” with her for special screenings for staff and residents and their family members. Swim Team follows a group of teenage boys on the autism spectrum and their families after the boys join a competitive swim team and learn the meaning of trial and triumph. They discover how their abilities in and out of pool help them overcome limitations and experience what it feels like to reach their potential in life—and to win, too! Stolman has done work for NBC, MTV, and HBO, among other media companies with a national audience. We sat down with her for some personal insights into the amazing journey that led to the making of Swim Team.

Q: Give us a sense of how and when Swim Team came to be. What compelled you to make a movie about this unique group of swimmers? 

A: When you’re a creative person with experience working with media companies, it’s common to ask yourself, “When am I going to tell my story?” I didn’t know what my story was. Then I had a child diagnosed with autism. I spent lots of time during the early-intervention years becoming an autism expert. I also learned that the leading cause of death for kids with autism is drowning, so I began a search for swim lessons for my child. That’s when I found the McQuays [Mike and Maria]. Within minutes of meeting Coach Mike, he made a huge impression on me. He said his Special Olympics swim team was going to “dominate the competition.” I had never heard this kind of positivity before. For so long I had heard so many negative things from so many people. Children with autism were constantly being defined in terms of what they couldn’t do. Coach Mike had a whole different take. He focused on all the things his kid and other kids like him can do. The story unfolding before me needed to be told. My instincts as a producer kicked in. I knew I was at the right place at the right time to make an impact with a film like this and change minds about what people with autism are capable of.

Q: How did your son inspire you in your approach to the creative process for the film?

A: Swim Team is entirely influenced by our story and experiences and everything I’ve learned raising a child on the spectrum.

Q: Describe your own challenges and triumphs making Swim Team. 

A: I was ready creatively. I also had lots of production experience. The challenge was fundraising and figuring out the marketing and distribution of an independent film. No one hired me to do this. I needed to make it happen. Every step of the way I wanted to make sure it got to the next step. Before we finished editing, I sent a 10-minute sample to the New York Times—and they loved it. This led to their commissioning a short film for the NYT website. After that, people started sending money, supplementing private donations, grants and a personal investment. Film festivals, community screenings, broadcast by PBS’s POV, excellent reviews and the availability of the film on Netflix, Amazon and iTunes all contributed to its success, both nationally and internationally. Robert DeNiro [who has a son with autism] introduced it at the Tribeca Film Center. And the McQuays were even chosen as ABC World News Tonight’s Person(s) of the Week. Swim Team has won 14 awards—and every single one was absolutely thrilling!

Q: How do you see your home state of New Jersey—as noted in your film, the state with the highest incidence of autism (1 boy in 26) in the U.S.—as a nexus for more public support for special populations in the future? 

A: That was when the film was released in 2016, but the rate has increased since then. Not all states report figures on autism. New Jersey does a more thorough job of gathering data. Filming Swim Team allowed me access to public schools, where I shot some scenes in special ed classes. I learned a lot about the system by observing, especially how important it is as a parent/teacher/coach to have high expectations. Coach McQuay never saw limitations in these kids. Believing what’s possible can turn into reality.

Q: Can you give us an update on former and current Jersey Hammerheads, including the amazing McQuay coaches in the film?

A: The Jersey Hammerheads are still swimming, as are the four boys who are the focus of the film. I know that Mikey still works at the zoo and Kelvin, who communicates with me via text, is part of a job training program. I stay in very close touch with the McQuays and generally keep up with everyone.

Q: What are your thoughts on the current housing crisis and what you’re learning at First Place and across the country?

A: This film was a huge transformational experience for me. It showed me what the future looks like for my son. It stresses the importance of community, of inclusion. Every community has an opportunity to connect on how best to support people with autism and developmental disabilities. I came to Phoenix because I’ve been hearing how Denise has done wonders with First Place. It’s revolutionizing housing for adults with autism. I want to see it replicated across the country. We’re at a crossroads and we have to change things. Our adults with autism need to be living in a pleasant environment where they can connect with one another and grow, with the support they need and opportunities to learn and work. More than ever, we can’t ignore that we have a huge population coming of age. Old models won’t do. Parents like Denise and me won’t stand for it.

(2019 Summer Series, Blog #5)

Since Matt moved into First Place–Phoenix, we’ve learned that when the skills, training and infrastructure are in place, so much is possible!

Still, we can’t (yet!) claim that everything is perfect for Matt; we still have plenty of things to worry about. His breakthrough seizures persist every six to eight weeks. I’m still pondering foolproof plans for cutting Matt’s fingernails and toenails every week (and checking for hangnails, too). We’re also working with First Place staff on a system for how Matt can take note of empty household and depleted grocery items and add them to his shopping list via his indispensable Alexa Echo.

And let’s not forget oh-so-important family discussions, wills, medical records and myriad other items, including ongoing updates with his state-appointed support coordinator and services providers.

As the next chapters unfold, we are making new lists of priorities and taking our next big steps with Matt.  We are preparing for his daily life and beyond, because we realize stuff changes—and so do we. Who among us is still working at our very first job, living in our first home or lucky enough to still be with their first love? (I proudly claim that last one!)

And yet, we’ve made exciting progress. Matt can live at First Place during the week and enjoy weekends at our home. He can join us for a vacation or find that he often prefers a staycation. He can hang with friends when he chooses for lunch, dinner or games of UNO or Scrabble. Based on this week’s schedule of bingo, bowling, “Beautiful Beats” drumming class (SUPER popular!) and The Beatles karaoke, I’d say we’re on our way.

What we all need are options and choices and ways to make decisions, so that we can support ourselves and those we love through family, friends, friends who become our family and a supportive community—a community that understands how to support Matt professionally through his therapy, personally through his life skills and more casually when a stranger spots him needing help in the grocery store or perhaps because he has lost his way.

While there’s still a lot of work to do, we’re getting closer to allaying our biggest worry of all about the future: wondering how Matt’s life will be like without us. After 28 years—26 of those post-diagnosis—of living with Matt, we’re now in a position to ensure that he can have a meaningful and enjoyable life. Matt is learning how to live his life (with support), while we’re exploring ways to live ours—all thanks to having choices.

Up next, blog #6 of our summer series, inspired by a collection of images over the past year reminding us of how far we’ve come!

(2019 Summer Series, Blog #4)

After working on Matt’s transition to his new home over several months (years!), Rob and I made the monumental decision for Matt to spend an entire week at First Place–Phoenix without us while we spent our 35th wedding anniversary in Kauai—just the two of us! With Matt making steady progress settling in and an able on-site staff, we took the plunge.

Leading up to our anniversary trip, we prepared and tested a lot: monthly master schedule for work, meals and socializing; daily schedules for his personal routines; high-tech tools, including camera apps and FaceTime practice sessions; and more. The combination of First Place staff and family being front and center for Matt also contributed to that critical peace of mind for us being so far away.

With systems in place, including his established SMILE Biscotti work routine, we just needed to get on the plane and put it all to the test:

Encouraged by the experience, we increased Matt’s time at First Place upon our return. He began spending weeknights there and weekends at our family home. Weekends provide us with valuable, concentrated time to observe what Matt can do, test out new skills and set goals for continued forward momentum toward increased independence. Years of IEPs have helped us appreciate the value of goal setting and the fact that Matt continues to learn—as do his parents!

Our next adventure? Yellowstone National Park this fall. Rob and I plan to experience all of the national parks in the years ahead as we enjoy Matt’s ever-increasing independence—from up close and afar!

Up next, blog #5 in our summer series: The journey continues!

(2019 Summer Series, Blog #3)

During months of trial and error and a detailed 16-step shaving process that Matt followed faithfully, his face cuts continued. That’s when we resorted to the one-step electric shaver solution. On this journey of right turns, left turns, U-turns and we-don’t-know-which-way-to-turn turns, simplicity is often the best solution, along with the attitude of not letting perfection get in the way of progress.

While the move to First Place–Phoenix Apartments happens over a weekend or a night for most residents, the course has been different for Matt, a young man with classic autism who lives in the moment and who has a higher level of support needs than many of his neighbors.

Our family has also had a lot to do with Matt’s extended orientation and transition. It has taken time to build our trust and confidence that protocols are in place, that our questions about how he’s doing at any moment can be answered and that his seizures are under better control. Our love, joyful time together and attachment to Matt also play a big role.

As noted in blog #2, lots of big stuff must be addressed on our watch—but there’s the little stuff, too:

Matt is not as independent as the typical First Place resident, as you may have seen in the PBS NewsHour series acknowledging Phoenix as “the most autism-friendly city in the world.” He has limited communication and social skills, is generally unaware of any kind of danger and lacks the ability to let you know when something isn’t right. He occasionally suffers from full-blown tonic-clonic seizures that are unpredictable and can be extremely dangerous.

But Matt also has a lot going for him. He’s sweet, friendly and highly adaptable. He’s an extremely hard worker and will, without fail, complete whatever tasks are on his daily schedule. He loves playing games with others, is always a good sport and brings out kindness in others. With those qualities in mind, and despite his challenges, we continue to do our part to ensure he’s comfortable, happy—and a good neighbor—at First Place.

Next up, Blog #4 – Test Run: Celebrating Matt at First Place—and our 35th anniversary with a vacation!