By Denise D. Resnik, Founder & President/CEO

I’ve never seen anyone express as much joy cleaning their home as Matt Resnik. While I doubt he actually enjoys the loud vacuuming or quiet dusting, he certainly values checking things off his list.

From doing laundry and emptying the dishwasher or trash to cleaning all the counters and doorhandles, Matt meticulously advances through each step with confidence, earnestness—and a smile.

Routines and practice over the past several years are paying dividends—not only for Matt, but for his parents and family, too.

We find great joy in knowing how much he loves his independent life at First Place–Phoenix, which includes hanging out in his rocking chair, and watching videos and listening to music whenever he wants. Or helping himself to a bowl of popcorn at all hours (crumbs don’t lie!) and nightly reading with Grammy. And he loves playing Scrabble, Mario Kart and air hockey with friends who teach him new techniques and cheer him on.

Matt’s days are filled with his SMILE Biscotti business, where he’s learning new skills like navigating transportation, entering data and making sales calls with coworkers. He also volunteers each week at the Heard Museum, where he has mastered the library filing system. Wherever he goes, Matt constantly shows us the ways he works at overcoming the myriad challenges of autism as he also teaches us about kindness—and how to listen with our ears, eyes and hearts.

While we don’t know what Matt dreams about at night, as parents we do know we’re living the dream while he confidently continues to build a more joyful, independent life outside of our family home with friends, a supportive community—and a smile.

By Denise D. Resnik, Founder & President/CEO

Recharging. It’s something we do daily and in a variety of ways. Consider the lengths to which we’ll go as we plug in our computers, phones or watches to avoid missing a message or a call.

We’re also willing to go the extra mile to plug in cars or in search of caffeine to make sure we’re supercharged and ready for the day. We even approach total strangers for “a little juice” if we’re really in a bind.

When it comes to your own personal power sources, how far will you go to plug in?

Admittedly, I don’t plug into my pillow as much as I should. Perhaps that’s because I get a charge out of what I do every day and the chance to connect and dream with other trailblazers. I also value moments to disconnect, take deep breaths and re-center through solo hikes or with family, friends and colleagues to explore all kinds of topics—like what’s good for our planet, its people and those we care about most. 

Leadership can be lonely at times. We allow ourselves to be vulnerable when we put our big ideas out there, hoping others grasp and appreciate how hard and fast we’re pedaling to keep it all moving forward.

So how do we stay grounded as we remain steadfast in our commitment to finding sustainable solutions to what stands in the way of more independent living for adults with autism and other neurodiversities? By surrounding ourselves with people we trust, who fortify and inspire and guide us toward what we need to know. That’s how we approach the work of the First Place Global Leadership Institute.

As we plan for the annual symposium this October, we’re cognizant of the myriad ways life is predictably unpredictable—and how trusted sources make us stronger as we navigate diverse, merging paths to get us closer to our goals and dreams for those we serve.

Join us to recharge by plugging into the amazing synergy we produce together as we work to fuel a new marketplace of home, job, healthcare and community options for adults with autism and other neurodiversities. And we’ll have plenty of charging sources available!

By Denise D. Resnik, Founder & President/CEO

Flip one’s wig (v.): To react to something, good or bad, with strong emotion

Matt loves my hair. Always has. He likes playing with the curls, sticking his nose in them for a whiff and making sure they’re lying on his pillow when we snuggle. While Matt never cared for the wig I wore while I was transitioning from dark to gray, he had no problem announcing Mom’s “wig hair” whenever he reached for it—never mind when we were out in public at the grocery store or pharmacy! 

Several years ago, after a long workday, Matt and I were driving on the freeway. He reached over with loving affection to touch my hair. What happened next was completely unexpected…

Matt pulled the loosely placed wig from my head, placed it on his and proceeded to lower the sun visor to check himself out in the mirror! Not much to do at that point but laugh.

Living with autism and Matt’s honesty, humor, idiosyncrasies and loving ways never ceases to fill our family’s hearts with an endless range of emotions that constantly reminds us of his many gifts.

As the First Place Global Leadership Institute’s 12th symposium, October 18–20, fast approaches, we’re committed to following Matt’s lead and transferring that honesty into candid conversations. Our agenda addresses the challenges, risks and opportunities of housing and community development—and what we can do together to maintain momentum for a new and improved marketplace that includes homes, healthcare, employment and education options for the special populations we so passionately serve.

Join us October 18–20 as we stay on track to drive change—together!

By Denise D. Resnik, Founder & President/CEO

Plans for an eight-day trip to Ireland as part of my immersive experience as a Virginia G. Piper Fellow hit big snags in Newark this past weekend. They included flight cancellations, limited routes to Shannon and, even as I write, the unresolved issue of lost luggage upon our unexpected early return to Phoenix. In many ways, I’m reminded of Welcome to Holland, a poem about travel as a metaphor for appreciating the differences of raising a child with special needs—something I’ve shared dozens of times with family members of children diagnosed with autism and other disabilities.

Being trapped for 36-plus hours in the airport without sleep, creature comforts, customer service (in person or online) or the availability of any hotel rooms was dispiriting. The airline finally provided a few cots at 3 a.m., along with some snacks and mini water bottles. As always, my husband Rob offered his quick wit, humor and analytical abilities to help us figure out our best course of action.

Consider the extensive planning for Matt before our departure, like making sure our wills, legal documents and his eight-page Day in the Life summary were updated; detailed daily calendars for First Place–Phoenix support staff, SARRC and family; cash in his wallet for shopping, bowling and dining out; and extra supplies, including several toothbrushes to replace what he mashes almost daily along with food he enjoys preparing himself in neat, portion-controlled bags. 

But wait…there’s more: adjusting daily work schedules along with our weekly routines with Matt; making plans with colleagues and myriad arrangements for my Piper Fellowship field work in Ireland; researching places of interest (Rob had his own including his diligent search for bucket list golf courses); packing rain gear, adapters, euros, etc.—and anticipating what we would need/want to schlep through airports and on the plane; and eating our way through the refrigerator before leaving.

Despite being sleep deprived, we found a few things that saved us: like a $48/hour quiet space designed for exhausted travelers, a free space for meditation, some decent but over-priced food and, most importantly, laughter throughout this unforeseen chance to share our honest feelings and disappointment with each other.

We also witnessed how people find ways to make the most of such situations—like the traveling teen who sat at the public piano during the wee hours sharing her incredible talent with other stranded passengers; the maintenance worker transporting trash while smiling at onlookers as he drummed with one hand to the beat of the bin’s squeaky wheel and pushed with the other. And who could resist smiling at the adorable faces of the children and their bleary-eyed parents as we parted long lines to make room for strollers.

As much as we’d love to be in cool, green, misty Ireland this very moment, we also appreciate that sometimes the trips that get rerouted end up being the most memorable—and a Phoenix-to-Newark-to-LaGuardia-to-Dallas-to-Phoenix journey reminds us there’s no place like home.

By Denise D. Resnik, Founder & President/CEO

Long before a shovel of dirt was ever turned, I had been turning sugar packets, saltshakers, salsa dispensers—and whatever else I had at my fingertips—into prototypes conveying the vision for First Place and the essential supportive ecosystem required for success. From kitchens, living rooms and offices to cafés, restaurants and classrooms, no one could escape the stories I felt so compelled to share—and the bold requests for wisdom, know-how and resources. Some ran the other way while many more listened patiently and rolled up their sleeves to make such an ambitious vision for individuals with autism and other neurodiversities a reality.

Those community champions are the reason for PBS NewsHour’s designation of Phoenix as “the most autism-friendly city in the world.” Maintaining this meaningful moniker requires continuous, 24/7 care and feeding—something to which First Place has been committed since that very first shovelful of dirt was turned in 2016.

While we still enjoy telling our story at every opportunity (i.e., tabletops or annual symposiums), the living, learning laboratory of First Place–Phoenix and the Greater Phoenix community is where we appreciate firsthand what works and for whom, as well as what needs to work better. It’s also where we’re committed to developing new models, systems and infrastructure while building capacity and leading promising public policy to expand our reach and impact.

Whether you come from national or international urban, suburban or rural areas, let’s “shake it up” together!

Join us for the 12th First Place Global Leadership Institute Symposium Oct. 18-20 and connect with aligned, committed trailblazers primed to turn dreams into reality with cost- and time-saving approaches to research, know-how, tools and training. Learn how integrated, connected communities are possible for people living, learning, working and thriving with autism and other neurodiversities—everywhere.

Register here to attend in person or via webinar.

By Denise D. Resnik, Founder & President/CEO

I remember my early days of learning how to dive from the big board. I practiced my form from the safety of the side of the pool. When I finally braved those reluctant steps to the diving board’s edge, I looked over to the lifeguard—who gave me the nod I needed—and then I dove in!

Before leaping into the water from such heights—or tackling anything new and challenging—it’s essential to surround ourselves with those who teach, train and spot us. We benefit from seeking out those with experience—including both success and failure—whom we trust to hold our hand when leaping into the “deep end.” This is especially important for those of us who have taken, or are considering taking, a dive into housing and community development for adults with autism and/or intellectual/developmental disabilities (A/I/DD).

We thank the dozens of Arizona leaders and stakeholders for joining and “spotting” us in producing the first-ever study to comprehensively address housing needs and preferences of adults living with A/I/DD and informing our collective next steps.

The 2022 Greater Phoenix Housing Market Analysis, conducted by the First Place Global Leadership Institute Make Waves Center for Community Development, was carefully planned and executed. We started by educating self-advocates and their families on their potential options as described in the guiding narrative set forth in First Place’s 2020 A Place in the World study. Then we collected market data through surveys offered in English, Spanish and plain language to identify barriers and explored how the public, private, nonprofit and philanthropic sectors can collaborate to respond to market demand. 

“Meeting the housing needs of people with A/I/DD will result in a healthier and more stable population, which can significantly reduce Medicaid costs, increase quality of life, and prevent involuntary displacement and homelessness,” says Maureen Casey, director of the Colonel Harland Sanders Center for Applied Research and The Daniel Jordan Fiddle Foundation Center for Public Policy at the Institute.

Without options, members of the neurodiverse population lives with family members until a crisis forces rushed decisions, often with traumatic consequences for the individual and their family—and costly consequences for our state. Lack of housing options too often prevents them from moving beyond their family home as integrated, contributing members of society with the support of those who know them best. As with the neurotypical population, they seek homes that are safe, affordable, comfortable and conveniently located with proximity to necessities and interests. They, too, want “community.”

Developing homes and community for adults with A/I/DD must take into consideration varying levels of support, navigation and benefits. Market demand data, housing models that enable us to learn from lived experiences, and outcome and impact analyses provide insights into what members of this population need and want—and enable the design of a blueprint offering more realistic options.

This is our moment to stand for and with the underrepresented, underserved and underestimated through data, proof points and solutions—and together build more housing and community options for the special populations we serve.

Home isn’t simply comprised four walls. It dwells among people, places and moments, offering comfort and security, building strength and celebrating life’s successes. Home and community “spot” us through life as they prepare us for what’s next.

After you dive into this compelling report, we invite you to complete this brief questionnaire to let us know how you would like to get involved in spreading the word.

By Denise D. Resnik, Founder & President/CEO

Remember your firsts? Sure you do. That first love—and broken heart. Your first job and home—and all that followed to help you learn and grow.

During Autism Acceptance Month, I’m reminded of those who have made so many firsts possible over the years for our family at home, as well as First Place–Phoenix and the Global Leadership Institute.

As First Place AZ leaps into its second decade, the charitable nonprofit does so with greater confidence, capacity and collaboration. Together with trusted tri-sector leaders, including SARRC, we are setting the bar higher for how individuals learn, live and thrive as we fuel a new era of housing and community development for people with autism and other neurodiversities—in Arizona, throughout North America and around the world.

Through training and curricula, model properties and programs, data collection and impact analysis, we’re identifying what’s working—and what needs to work better. And through trusted champions across the U.S., we’re pursuing scalable, replicable and financially sustainable models, recognizing authentic community building happens locally and organically. 

Click to access the 2022 Annual Report.

Our supportive community has opened doors and connected us with both like-minded and divergent organizations. It has enabled us to dream, innovate and ensure this all-too-often invisible population of adults with autism and other neurodiversities is accounted for and recognized based on needs and preferences—and not a diagnosis alone. Collaborations like those with Home Matters® to Arizona and the “Home is where it all starts” campaign encourage us to work together to address the broader housing crisis of affordability, accessibility and availability that impacts everyone.

We hope you enjoy this 2022 annual report offering insights into how individual and shared experiences express what’s possible for our loved ones. Whether a first swim, culinary delight or stage performance, we don’t experience it alone but with those who appreciate the power and potential of that first step.

Many have believed early and often in our first and next steps—and joined us in celebrating when we get it right. We’re grateful and inspired to do more!

By Denise D. Resnik, Founder & President/CEO, First Place® AZ

I’m sensitive. Always have been. As a kid, it caused me to carry too much weight on my shoulders, worrying about family, health and the pressing issues of the day. As an adult, I worried endlessly about our son Matt’s autism diagnosis and whether he would ever speak. Then he surprised us at age 4 by spelling words—like octagon, triangle, rectangle—with sidewalk chalk! A year later, he began singing in a loud, clear, sweet voice while on horseback—and on my back, too! In those special moments, all that weight felt just a bit lighter.

The burden returned during the trying times of getting him to eat something other than pureed food—and the leather on our couch and in my car. Then it would lift again through his love of baking and mastering egg cracking at an early age, skills he still enjoys today.

While I stopped carrying Matt around decades ago, the crushing weight of his issues and those of the broader autism community persisted. Early on, I learned to compensate for my small frame through strength-training and problem-solving. Fortunately today, the strength of our connected community is carrying more of the load and moving us all forward.

As the Southwest Autism Research & Resource Center celebrates its 25th anniversary, it also sustains a proud legacy of addressing prevailing issues head on and a history of steady, solid advancements in this ever challenging field.

As First Place® AZ marks its 10th anniversary, I recall countless stories and lessons for how we’ve positioned the charitable nonprofit for transformational societal impact addressing housing and community development for individuals with autism and other neurodiversities. To ensure options are as bountiful for people with different abilities as they are for everyone else, we must build a supportive, sustainable community—beyond the four walls of a home—where they can live and thrive.

First Place is focused on matching the diverse interests and needs of individuals with the right property location, design and amenities—rooted in communities everywhere. A new generation of dynamic housing models is contingent upon collectively tapping the strengths of the private, public, nonprofit and charitable sectors.

When another mother on a mission recently asked me whether I ever imagined back in 1997, the year I co-founded SARRC, that it would be where it is today, I paused. How could I possibly have envisioned the present-day power of its senior leadership and board, strength of its 220-person staff, stable $18 million operating budget, robust research, model programs and so much more?

But I did envision what I needed as a parent, how I wanted to feel and how every person and family member impacted by autism wanted to feel: less burdened. We needed to know we were not alone. We needed hope and to be able to not only dream about a brighter future for our kids but also to get a decent night’s sleep knowing others were in our corner. We had to believe our adults children could one day have a friend, a job and a home of their own.

As sister nonprofits, First Place and SARRC share a common vision for all these things, as well as a common goal to lift the burden from too many families searching for answers. For all our present-day problems, we need healthy hearts and minds infused with purpose and hope, loving family members, good friends—and so importantly—a supportive community.

Always stronger together!

*****************

Join us to experience the power of community during SARRC’s Annual Community Breakfast, Thursday, April 14, at the Arizona Biltmore and a private screening of the award-winning autism documentary, In A Different Key, Sunday, May 15 at the Madison Center for the Arts.

Learn more about our collaborative efforts to lighten the load at A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities.

First Place AZ hosted a Global Leadership Institute Symposium Oct. 25-27, 2017 to provide service providers, developers, educators and families with information on building a supportive community, to include fundraising and collaborative strategies with public, private, philanthropic and nonprofit interests.
 
Participants from 12 states attended the symposium. Participants experienced the First Place Transition Academy, which teaches independent living skills to adults with autism; the Southwest Autism Research & Resource Center; GateWay Community College; and other locations within Phoenix’s supportive community, dubbed “the most autism-friendly city in the world” by PBS NewsHour.
 
The two-day symposium featured a workshop on health and wellness led by Javier Cardenas, M.D., Adult Autism & Developmental Disability Multi-Speciality Clinic at Barrow Neurological Institute; life skills development and independent living by Paige Raetz, Ph.D., BCBA-D, SARRC Residential Transition Director; and leveraging community assets by George Braddock, president of Creative Housing Solutions and faculty member of the First Place Global Leadership Institute.
 
John Donvan and Caren Zucker, award-winning journalists and authors of Pulitzer Prize finalist, In a Different Key – The Story of Autism, moderated a workshop on safety and security. Buckeye Police Chief Larry Hall participated in the discussion with Emily Iland, producer of Be Safe the Movie, along with First Place Transition Academy participants.

Photo creditSydnee Schwartz, ASU Walter Cronkite School of Journalism and Mass Communication student

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.”