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

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)

I drafted the first strategic plan on housing in 1999—just two years after co-founding the Southwest Autism Research & Resource Center (SARRC)—but our first published research didn’t follow until a decade later through a study titled “Opening Doors: A Discussion of Residential Options For Adults Living with Autism and Other Related Disorders.” This groundbreaking study represents the evaluation of nearly 100 properties and programs for special populations across the U.S. It also presents 10 specific design goals and guidelines, maps out the steps required to build and advance a marketplace of housing options for special populations and includes a collection of resources. The study included focus groups involving more than 100 individuals with autism and their family members, helping shape our bold vision that endures to this day: to ensure that housing and community options are as bountiful for people with autism and other different abilities as they are for everyone else.

We recognized that collaboration among the public, private, philanthropic and nonprofit sectors is essential to achieving that vision. We brought together leaders from throughout Arizona and across the country to further inform our plans through a national family roundtable, two national charrettes and literally hundreds of meetings dissecting problems, probing solutions and anticipating new challenges.

This graphic is the result of our national family roundtable, summarizing the hopes and dreams of families. It’s stored in our ‘peace room’ and helped guide the development of First Place-Phoenix, together with other significant bodies of work.

We’ve learned a lot through the years and are eager to share more with you as we collaborate to empower a new wave of real estate in this important marketplace. Please join us for First Place AZ’s fall Global Leadership Institute Symposium from October 24 to 26. There’s still much to learn from each other—and even more we can do and build by working together!

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.”

John Donvan and Caren Zucker, award-winning journalists and authors of New York Times-best seller, In a Different Key—The Story of Autism, spent four days in Phoenix this month filming a segment for PBS NewsHour. Their focus is on transitioning adolescents and adults with autism, featuring students from the First Place Transition Academy operated by SARRC.

Here are photos taken by Stephen G. Dreiseszun, Viewpoint Photographers, and Sydnee Schwartz, ASU Cronkite journalism student, who were shooting the shoot. We’ll keep you posted on when the story airs!

PBS NewsHour has aired two stories about Greater Phoenix’s supportive community for individuals with autism, featuring First Place AZ, SARRC, and SMILE Biscotti.

WHAT: PBS NewsHour’s “A Place in the World”

WHEN: Segments aired during the 6 p.m. MST broadcast on Tuesday, August 9 and Wednesday, August 10

WHERE: PBS Ch. 8 Phoenix

John Donvan and Caren Zucker, award-winning journalists and authors of New York Times-best seller, In a Different Key—The Story of Autism, produced the segments.

Giving adults with autism the skills to build independent lives

PBS NewsHour Segment - Giving adults with autism the skills to build independent lives

How Phoenix became the most autism-friendly city in the world

 How Phoenix became the most autism-friendly city in the world

Photos taken by Stephen G. Dreiseszun, Viewpoint Photographers, and Sydnee Schwartz, ASU Cronkite journalism student, who were shooting the shoot.

PBS NewsHour Social Media:

Facebook

Screen Shot 2016-08-09 at 12.46.20 PM

TWITTER: 

Screen Shot 2016-08-09 at 12.49.37 PM

INSTAGRAM: 

Screen Shot 2016-08-09 at 12.51.55 PM

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

Something fell on the sidewalk. I saw it from a distance.  I also saw other cars speeding by.

As I approached, what I saw was an elderly woman lying motionless on the side of the street. I pulled over immediately, explaining to Matt that he needed to stay which was in the car, stuffed with 480 eggs and hundreds of pounds of biscotti ingredients as we were on our way to prepare SMILE Biscotti batter.

Two millennials rushed over to check on us, then kindly offered to deliver her home. I followed and observed as she waved goodbye and blew kisses.Fortunately, Catherine is ok. I was relieved to see she was conscious and ruled out 911 at her request.  Then together we dusted her off, found her glasses and applied some tissue to the scratches on her face. She didn’t live far, but there was no way I could wedge her into our car. That’s when I looked up and saw another stopped car.

Oh, the kindness of humanity at its best. We stop for people who are older or people with obvious physical disabilities.  But will someone stop and recognize someone needing help?  What happens when the disability is not so obvious, or in Matt’s case, autism?

I’m banking on awareness and kindness, the most critical ingredients to creating a supportive community. And the need for community support is significant.

Different Brains Ingredients for a Supportive Community
Inside the SMILE kitchen

At least 60 percent of youth with autism have at least two health or mental health conditions in addition to the autism spectrum disorder, according to the A.J. Drexel Autism Institute Life Course Outcomes’ 2015 National Autism Indicators Report. In addition, one in four young adults with autism are socially isolated, according to the same data.

I’ve often wondered who will catch Matt’s fall, recognize his special needs and his oh so beautiful mind, talents and heart. Who will discern Matt from his autism and medication side effects and be the diligent sleuth always searching for answers to the issue of the day, week, month or year?

While I cannot expect others to care as much as I do, I do expect a supportive community to desire similar outcomes, which are in our collective best interest.  Greater independence and higher quality of life will significantly reduce cost to society. Moving the needle on positive outcomes will increase job satisfaction for direct support service providers, educators and medical professionals. For parents and family members, peace of mind is priceless.

Different Brains Ingredients for a Supportive Community
Inside the SMILE kitchen

Matt and I arrived at the commercial kitchen in time to greet 10 of his SMILE Biscotti co-workers and volunteers, who prepared batter for 3,000 pieces.  Matt and his helpers, with dedication, determination and care, cheerfully spent the afternoon baking, learning employment and social skills in the process.

As we conclude another Autism Awareness and Acceptance Month, and reflect on the enormous number of articles about our cause, hopeful and soulful stories of personal triumphs, and scientific advancements, I am mindful that should Matt be struggling and in need of help, that a passerby would stop and kindly help him to his feet again.