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!

(2019 Summer Series, Blog #2)

At 7:30 p.m. one recent evening, Rob and I were alerted via the Life360 tracking app that Matt had left First Place and was traveling down Third Street toward Central Avenue. We knew the First Place van had taken Matt and other residents out for a weekly Tasty Tuesday excursion but had also returned everyone to the property. So, what compelled Matt to take a hike? He never leaves the property alone.

Alarmed to say the least, we proceeded to check out all the systems we have in place. First, Matt’s in-home camera didn’t show any activity. Second, we saw he had not yet checked off the next item on his iPad schedule or contacted me for our nightly FaceTime visit—both of which are listed on his list of daily to-do’s.

What to do next? We switched to a simple phone call to First Place inquiring why Matt had left the property and where he was going. With great relief, we learned from the concierge that Matt was safe and sound in his apartment—but without his iPad. He had left his backpack in the First Place van after the group dinner out at a local restaurant. In his trusty backpack were his iPad and iPhone, both with the Life360 tracking app.

Staff recognized immediately that his backpack was missing because it wasn’t hanging in the usual low-tech “drop and go” spot, an area where residents can routinely charge their electronics and store their keys and other belongings for quick drop-off/retrieval. Whew! What a great test of our systems; we passed with flying colors—this time!

Matt often accesses other items in his personal technology portfolio—namely Alexa on his Echo (high-tech) to bring The Beatles, Elton John and The Beach Boys into his home, update his grocery list and check the weather. Based on the forecast, he consults his laminated “What do I wear?” chart (low-tech!) before laying out his clothes for the next day. Another app allows Matt to recognize who’s at the door and respond to a ring accordingly (after ignoring our knocks and inadvertently leaving us stranded outside his apartment). And he depends on a Sharpie ink mark to tell his right shoe from his left.

Matt still deals with breakthrough seizures despite medication, so keeping a watchful eye on him and making sure he’s safe is priority number one. Nearly all his furniture is soft, and area rugs absorb sound and offer cushioning. A variety of high- and low-tech systems is essential as we strive to balance his personal privacy and independence with safety concerns.

We remain focused on Matt’s many strengths, as well as the caring and capable community empowering him to live more independently as he enjoys more life experiences and benefits from support specialists, community life, technology, family members and neighbors, all of which play a crucial role in his daily life—and ours!

Next up, Blog #3: Gradually Building on Success: Taking stock of the little stuff, too

(2019 Summer Series, Blog #1)

Matt is a 28-year-old man with “classic” autism who has been able to work, communicate with some limitations and enjoy a good game of Uno or Scrabble. We take stock in these and other strengths, including his ability to make most of his meals (in part due to his self-limited menu). And yet, while he’s learned how to peel and cut apple slices (one of two fruits he’ll eat), he’s not able to tell a good apple from a rotten one.

So here’s what Matt can do:

In a relatively short time, Matt has learned the value of his apartment key and what to do if he forgets or loses it, the joys of Face Timing with mom and dad, and the creature comforts of his new digs.

And then there’s what he can’t do:

More about Matt is documented in the First Place Interest Survey, reminding us of his interests and those we’d like him to explore, and his Personal Profile, acknowledging areas where he can be independent, needs some support or is totally dependent.

We’re still working on more accurate responses to Matt’s confounding “wh…” questions, thanks to weekly parent training sessions and monthly staff meetings, including those with clinicians from the Southwest Autism Research & Resource Center (SARRC).

But learning to live independently didn’t start here. It started with dedicated First Place staff to build a week in his life, day by day, figuring out how it would all come together. Matt started with just a few pieces of furniture and a few overnights a week at First Place with me sleeping on the couch—listening, lying awake, scribbling notes about Matt’s many needs (OK, and fretting some, too…).

We’ve started this journey grateful that we’re by his side—and that First Place and SARRC are by ours, keeping us all on the right path and feeling more confident in our futures.

Next up, Small Steps and a Big Team: The benefits of high- and low-tech solutions (Summer 2019 Series, Blog #2)

Our 2019 summer blog series chronicles the journey of our son Matt’s transition to life at First Place–Phoenix, thanks in large part to Rob—Matt’s tech-savvy dad, “father of fun” and my husband of 35 years—our supportive family and the talented First Place team. We hope it will assist you or those you love through some valuable lessons learned along the way.

While Matt has been our personal inspiration, we’ve reached out far and wide over the past two decades to inform the design and operations of First Place–Phoenix through the evaluation of 100 properties for special populations across the U.S. We’ve hosted focus groups, national design charrettes and a national family roundtable, acknowledging hopes, dreams and fears.

Much time has also been invested in community life at First Place, with a focus on how residents connect with the broader community where people make friends, find jobs, access healthcare, enjoy lifelong learning—and have fun!

We recognize the huge transition this represents for us as parents seeking to build confidence in the future: Matt’s and ours. Every planning session, every hard hat tour and now every day in real time remind us of Matt’s momentous, complex and profound journey.

We hope you’ll join us on this summer blog series—and benefit from some of the valuable, enduring lessons we’ve learned along the way!

Next: Plugging the Holes: Taking note of what Matt can—and can’t—do (Summer Series Blog #1)

After an exciting, jam-packed week, the very first Transition Academy participants can now call themselves graduates! Last Wednesday, the graduates were honored at a special convocation ceremony and lunch at GateWay Community College in Phoenix. Thursday was the actual graduation ceremony. The week wrapped up on Friday with a leisurely, delicious brunch at 29 Palms generously provided by First Watch. Family members, friends and SARRC and First Place staff gathered to mingle and reminisce. The big take-away was everything they learned over the last two years on their way to living more independent and joyful lives. Great things await our graduates!

A few graduates took the time to share their insights when asked to weigh in on the following:

1) Someone you know is interested in attending the Transition Academy and is asking you questions about your experience there. What advice would you give that person to get them started?

2) Tell us about one of your most special memories from the past two years.

By Denise Resnik, Matt’s mom; originally posted on Different Brains 

In 1993, we were one of those families.

At age 2, our son had just received a diagnosis of autism. Back then, we didn’t know what to do or where to go. We barely knew what autism was. The landscape was barren and the internet just emerging.

I connected with a small support group of mothers of children with autism who met regularly at a local coffee shop. One table became two, then four—then an entire restaurant was filled with moms and dads.

We were all focused on the many pressing questions of the day. We pursued any and all answers and remedies: intensive early intervention; applied behavior analysis (ABA) therapy; vitamins; pork hormones; therapies supported by data and some not—but which might help our children sleep, eat or stop chewing the leather from the living room couch.

Then there were the really big questions: How did this happen? Will he recover? Was I to blame? What happens after school ends? Where will he live as an adult? How can I be the mom he needs and deserves when there’s so much I don’t know and so much I fear?

We found answers in our supportive Phoenix community of friends and families.

In 1997, the Southwest Autism Research & Resource Center, or SARRC, was founded quite humbly—without funding, staff or office space but with big dreams and lots of ideas. We believed that if SARRC focused on what was right for our families and the community at large, then we could create a model for communities everywhere.

Today, SARRC is 150 employees strong, an organization with a $10 million-plus annual operating budget serving as one of the most robust autism research sites in North America, including the enrollment of subjects in pharmaceutical trials.

Thanks to SARRC and our supportive community, the stage was set for the creation of First Place AZ. Established in 2012 as a sister nonprofit to SARRC, First Place is focused on ensuring that housing and community options are as bountiful for people with autism and other neuro-diversities as they are for everyone else.

Answering “What’s Next” for Adults with Autism

Once again, families are gathering in living rooms, coffee shops and agencies throughout the community, planning for what’s next. New residential models are being introduced, informing and empowering a marketplace to offer more choices for the diverse needs of this population. At First Place, we’re adding to the mix with an innovative residential model that is replicable, scalable, financially sustainable, as well as affordable through sources of government funding.

First Place–Phoenix, our first model property, broke ground in December 2016 and is proceeding with vertical construction. It will open next spring in the heart of downtown Phoenix.

The First Place Apartments are being formally introduced to the marketplace this month. Informative meetings are taking place as we launch our leasing program. Families and individuals are gathering for monthly Q&A sessions to explore what’s next—and what’s best—for them and their adult children with autism and other neurodiversities.

First Place continues work that is consistent with SARRC’s early mantra of answering questions and questioning answers. We are focusing on the importance of person-centered planning and community-based solutions that offer security, health care, friends, jobs and lifelong learning—all at a “first home away from home.”

This community is hard at work addressing that looming question: “Who will care for our adult children when our families are no longer able to?” This community is giving our children and adults more chances to succeed, filling hearts with more hope than fear and giving us more much-needed reasons to smile.

Thank you, Phoenix, for your leadership and partnership, which are enabling us all to create what just one year ago PBS NewsHour named “the most autism-friendly city in the world.”

The components of First Place fit together like puzzle pieces, forming a clear vision of a bright future, and the path to get there.

Live. Learn. Lead.

When you drill down to the details of First Place, breaking away the various petals of the concept and design, these are the words that stay with you. And depending on who you are, they mean different things. For some, they are ambitious destinations—goals set out for those that will very soon come to First Place. For others, for parents and siblings and family members, they are wishes—dreams that their children will become adults who are able to live fulfilling lives, able to learn new skills, and able to lead us into a future that is accepting, embracing and empowering.

More than 1.5 million Americans are living with an autism spectrum disorder. One in 68 are being diagnosed with autism and more than 500,000 U.S. children impacted by the disorder are entering adulthood this decade. When you consider these numbers, the need to develop a place that helps these individuals live and learn, a place that leads the way and carves a new approach becomes imperative.

The facts are sobering. Most individuals with autism will need some type of support throughout their lives, and the average incremental cost to support a person with autism over their lifetime is about $2.4 million.

But what if we changed that outlook, flipped it on its head, and saw things for their potential rather than their cost? What would happen then? What if we taught people how to live, gave them opportunity to learn and lead the way?

Consider the components of First Place

Our Mixed-Use Property: First Place is leveraging the benefits of a supportive urban community created and facilitated by SARRC. This urban area offers jobs, volunteers and recreational activities, continuing education, friends, and an appreciation that individuals with special needs can be productive, contributing members of society and bring out the best in all of us. It is a special community and living, learning laboratory for the residents and students at First Place, and the important work of the First Place Leadership Institute.

Live

First Place Apartments – The contemporary, 50-unit First Place Apartments will be community-connected, transit-oriented and sustained by a suite of amenities and supportive services.  Here, residents will find the comforts of home, without the distractions that can make life difficult. Residents may choose to live by themselves, with a roommate or with an aide/mentor.

Learn

First Place Transition Academy – Modeled after the celebrated Taft College Transition to Independent Living (TIL) program, founded in 1995, First Place is translating a successful rural- and community college-based program, into the fabric of the 6th largest metropolitan area in the U.S. More than 350 students have graduated from the California program and are living more independently than they and their families ever imagined. The program is also saving the state $300 million based on career-readiness and greater independence early in adult life, and the significant reduction in state-funded support services. Jeff Ross, founder and creator of the TAFT TIL program, recently retired from Taft and has relocated to Arizona to serve as the program director of First Place. He is working closely with SARRC to help the organization build its new residential services program, so SARRC may serve as the program manager and leverage its research capabilities, professional staff and clinical operations.

Lead

First Place Leadership Institute – Represented by a faculty of luminaries from across the country, the First Place Leadership Institute is set to focus on pressing concerns at both the local and national public policy levels.  Through a National Housing Action Plan, First Place is creating a location and platform for geographically and programmatically diverse organizations united in their mission of creating more housing choices for individuals with autism and related disorders.