(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)

This month marks the two-year anniversary of the First Place–Phoenix groundbreaking. I’m happy to report that our culture of inclusion and learning is alive and well.

We are enjoying the daily comings and goings of residents, including First Place Transition Academy participants, as they head off to work, study, volunteer, shop or simply to recreate. Seasonal highlights include everything from visits to the Desert Botanical Garden, ZooLights and the Musical Instrument Museum to shows like Elf the Musical, Winnie the Pooh and Swan Lake—with sunny hikes, holiday choirs and festivals in between.

Within First Place, shared experiences and collective memories are building our culture and an authentic and active community life. Consider these weekly happenings: Sunday brunch, Taco Tuesday, Thirsty Thursday, bingo night (called in four languages by one of our residents) and barbecues at Joey’s Grill. And consider friendships being created naturally and nurtured daily!

On a very personal note, our 27-year-old son Matt has embarked on his journey of transition and taken us right along with him as he teaches us daily how best to support him. Together with First Place staff, private therapists and SARRC’s parent training, we are helping to shape his new routines and identify where he needs assistance.

Consider how we’re progressing together toward Matt’s more independent life at First Place:

Still a challenge: interpreting Matt’s tricky “yes” and “no” answers. When asked whether he brushed his teeth or took his medicine, he may answer no because he hears the question as a repeated request and doesn’t want to repeat the task if he’s already completed it. First Place support specialists are helping us explore other ways to frame questions. 

Matt is enjoying Bingo night, yoga, bowling and all kinds of community activities, including a recent Suns game with fellow residents. When he hosts dinner parties for neighbors, chicken drumettes, chips, cookies and apples are his go-to menu items, along with UNO, Scrabble, his favorite songs (The Beatles tunes included) and those of his guests.

Together with like-minded parent, grandparents, passionate pioneers and our uniquely supportive community, we are expanding Matt’s sphere of opportunity and independence, and helping him—and us—embark on a major new life chapter. Thank you to each and every supporter of First Place for believing and trusting in us—and giving us all greater peace of mind this holiday season and throughout the coming years.   

Matt’s Mom

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.”

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

Matt and I love to go bowling.  Others detect how much when we roll in with our own bowling balls, making us look much better than we are!

Let It Roll- New Options, More Choices for Adults with Autism 3Last year, we connected with a social group for young adults with autism and special needs and now find ourselves bowling most Saturday afternoons. With or without bumpers, bowling is a great equalizer. While some adopt more traditional bowling forms or use the aid of a ramp, others display creative streaks that make the experience even more fun and entertaining. There’s the two-handed, side bowler; the basketball bowler who throws the ball like he’s shooting hoops; the Wii bowler, who attempts to influence the ball through whole-body gestures and; of course, the let-it-roll-from-between-your-legs ‘granny style’ bowler.

Let It Roll- New Options, More Choices for Adults with Autism 2
Matt Resnik gets ready for his turn

Style doesn’t really matter.  There’s plenty of room for individuality.  The fact is each ball arrives to its intended destination knocking down the pins, sometimes quite surprisingly.  Smiles and high fives or frustrating sighs and words of encouragement often follow.  Strikes command a special criss-cross high 10!

Consider other great equalizers like karaoke and karate, or a business like Matt’s SMILE Biscotti, which makes customers smile (the shortest distance between two people)!  Differences and diversity can connect us and add character to a place, culture or Saturday afternoon—and they should be celebrated.

As we proceed with plans for the groundbreaking later this year of First Place-Phoenix, a new residential option for adults with autism and other special abilities, we’ve been focused on celebrating neuro-diversity. To accommodate for differences and support people to live more independently, the property features supportive physical space like smart home technology and sensitive design through sound reducing appliances, soothing color palettes and durable materials.  The property also includes a suite of supportive services, amenities and navigators for life skills, health/wellness and community connections.

Integrated into the fabric of community and located within the heart of the urban area, First Place embraces life’s ‘equalizers’ at every turn. We have big plans for this initiative, based on more than 15 years of research at SARRC and in collaboration with the Urban Land Institute and Arizona State University. To learn more, check out this brief film:

We also celebrate our participation in the Coalition for Community Choice, a national grassroots alliance of individuals with intellectual and developmental disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and service providers, which aims to increase options for, and decrease barriers to, housing and employment choices.

Let It Roll- New Options, More Choices for Adults with Autism 4Together we advocate for more options that are person-­centered and based on individually defined preferred settings, support needs and meaningful life goals. We need more options so individuals and their families have more choices for what works best for them.

We hope you’ll join us in this effort and learn more about First Place, its Transition Academy now underway and operated by SARRC, and the First Place Apartments available fall ’17.

With Lucky Strike bowling alley just a few light rail stops away from First Place, I anticipate Matt will be putting his bowling ball to more frequent use in the years ahead. Joined by more friends, who are likely more fun, I hope he’ll will still want me to play on occasion too!

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

Cleaning out closets, drawers and the garage seemed like a good plan for ringing in the New Year. Matt’s closets took the longest. The biggest challenge: parting with the cue cards, flashcards, Velcro-backed picture cards and all kinds of games, systems and tools that have helped Matt learn, communicate and advocate for himself.

Still significantly impacted by his autism, Matt’s perseverance and our own have empowered him to learn, connect and enjoy the benefits of a job well done. In 2013, Matt launched SMILE Biscotti®, his Phoenix-based baking business in 2013, to further his independence.  It has done much more than that already! SMILE reflects daily how the early intervention and many efforts through the years have paid off.  While completing over 100 holiday orders late last year, we saw new evidence of Matt’s supervisory skills, as he modeled for co-workers how to more efficiently package their biscotti, quietly correcting a few of their mistakes along the way.

Community building is something we’ve been demonstrating in Greater Phoenix for nearly two decades through SARRC®, and now First Place AZ®. For us, community speaks broadly to embrace differences and celebrate diversity; involving our neighborhoods and schools, places of work and worship, health and wellness centers, and creation of new home options.I also paused to reflect on our unexpected life’s journey while reading the newly released historical account on autism, “In a Different Key,” written by  journalists John Donvan and Caren Zucker. Powerfully written, informative and captivating, the book evokes the many struggles, triumphs and chapters of our life with Matt, which were shared by the pioneers in the field and those who have joined the fight since his diagnosis.  Caren is a fellow mother on a mission who reinforces, “how good a life can be when your community embraces you!.”

SMILE Biscotti’s success is a beautiful example of how a community has embraced Matt and his coworkers. Also noteworthy is the community they’ve built together, connecting through teamwork, common interests like “Uno” breaks and shared satisfaction of a job well done. These young adults and hope are the most important ingredients in SMILE Biscotti.

I’ve clung tightly to my hope. Hope that the California doctor who confirmed Matt’s diagnosis was wrong when he said, “love, accept and plan to institutionalize him.” Hope that his epileptic seizures could be controlled and not stand in the way of greater independence. Hope that he would find a community where he can live successfully and happily with friends and away from our family home.

What I didn’t find in our closets or in those three-ring, four-inch binders documenting Matt’s history was a roadmap that would predict his future — something I longed for during those early years. I wanted someone, anyone to tell me it was going to be OK, that he was going to be fine, as would our entire family. Instead, we created our own hope and dreams together with other parents, family members and a supportive community who wanted the same outcomes.  And together, we are moving mountains.

Excited to share more in the year ahead about the expansion of SMILE Biscotti, groundbreaking of First Place-Phoenix, a new residential model for adults with autism and other special abilities, and more community building, big dreams and history in the making.  Onward!

PHOENIX, Ariz. – January 26, 2016 – First Place®AZ, an Arizona-based nonprofit serving adults with autism and other special abilities, has received a $50,000 grant from the Phoenix-based Board of Visitors to launch the 360 Health & Wellness Initiative, increasing health independence.

The initiative will establish a continuous spectrum of health within a community framework through the creation of 30-40 learning modules for individuals with autism, their families and support providers, and health care professionals.

Far too often, medical issues are addressed through the lens of autism, such as viewing frequent drinking or urinating as obsessive and repetitive rather than as possible signs of diabetes; or framing irritability as increases in autistic behaviors rather than as potential underlying G.I. distress or other pain.

“Early detection of health issues is frequently missed due to the core characteristics of autism, which include social impairments, communication difficulties, and restricted, repetitive and stereotyped patterns of behavior,” said Denise D. Resnik, First Place president, Board chair and founder. “Through targeted education, the 360 Health & Wellness Initiative will increase independence for individuals with autism, improve healthcare access and empower families.”

More than 1.5 million Americans are living with an autism spectrum disorder, a number on the rise. The increased prevalence from one in 2,500 a few decades ago to one in 68 today (CDC Prevalence Study) is producing a growing population of children with autism now entering adulthood. More than 500,000 U.S. children with autism are transitioning to adulthood this decade.

First Place is teaming up with the Southwest Autism Research & Resource Center (SARRC) to spearhead and implement the 360 Health & Wellness Initiative. Composed of curriculum, toolkits and assessment strategies, the initiative is poised for a broad and cumulative impact, beginning with early adopter students and residents of First Place-Phoenix, a new residential model breaking ground in 2016; expanding to the greater community of special learners within Metropolitan Phoenix; and then pushing out to a national audience through online education.

The Board of Visitors is the oldest charitable organization in Arizona, serving the healthcare needs of women, children and the elderly. The Board of Visitors has distributed more than $17 million to nonprofits in the greater Phoenix area since 1908.

“The Board of Visitors, the oldest charitable organization in Arizona, is proud to support the work being done in our community by First Place and their ‘360 Health & Wellness Initiative.’ The program, which meets our mission statement of serving the healthcare need of women, children and the elderly, will have a positive impact on individuals with autism and provide support to their families,” said Sydney Fox, chairman of The Board of Visitors.

360 Health & Wellness Initiative collaborators:

Project Lead/Manager: Valerie Paradiz, Ph.D., First Place curriculum specialist and Director of the Autistic Global Initiative, a division of the Autism Research Institute. Dr. Paradiz serves as an NGO representative to the United Nations and brings many years of curriculum design, technical assistance and strategic planning to the team through her national work with schools, universities, corporations and agencies that support individuals with autism and related disabilities.

Medical Consultant: Raun Melmed, M.D., is director of the Melmed Center and co-founder and medical director of SARRC. He has set up physician training programs for the early identification of infants and toddlers with developmental and behavioral concerns, and authored a program geared toward the early screening for autism spectrum disorders.

Medical Consultant: Javier Cárdenas, M.D., is the director of the Barrow Concussion and Brain Injury Center, a multidisciplinary clinic that is nationally recognized for comprehensive patient care. He is also the director of the Barrow Concussion Network, the most comprehensive concussion program in the U.S. He serves on the NFL’s Head, Neck & Spine Committee, is chair of the Arizona Interscholastic Association Sport Medical Advisory Committee, and chair of the Arizona Governor’s Council on Spinal and Head Injuries.

By Denise D. Resnik, Matt’s mom; To students at GateWay Community College, who have welcomed differently abled adults on campus through the First Place Transition Academy, allowing our First Place students to benefit from campus life and life skills classes while also benefitting from employment opportunities and a supportive culture.

To employers that are opening doors more easily and broadly, recognizing the skills and abilities of individuals with autism and other special needs, and bringing out goodness and kindness in co-workers.

To customers who learn about SMILE Biscotti and become enthusiastic promoters, helping us spread the word that individuals with autism are productive, contributing members of our community.

To the families who walk through the doors at SARRC, entering as overwhelmed, worried strangers and leaving as friends empowered with resources, support and, most importantly, hope.

To the grocery store shopper in aisle 10, who volunteered to rummage through my purse for Matt’s seizure medication when he fell into my arms during last week’s grand mal seizure, easing the stress of a very stressful situation.

No longer are we strangers. We are moms, dads, neighbors, friends, employers and communities working together to write new history for how adults with autism and other special abilities are paving the way for our society to be more aware, accepting and engaged –giving us all more reasons to smile.

Please join us in spreading holiday cheer this season through your acts of kindness, compassion and sharing.

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

When our son Matt graduated from high school in 2013, his daily routines and patterns, developed for years within the same supportive environment, came to an end. We asked ourselves, “how can we fill 168 hours each week with meaningful, purposeful activities and not allow Matt to slide backward?”

At the age of 24, Matt is part of a generation of more than 500,000 U.S. children with autism entering adulthood this decade. As the school bus stops coming, parents and communities are faced with autism’s perfect storm: an increasing population of special needs adults, many whom cannot live independently; dwindling government resources; and few housing options. Families are also faced with medical issues, developmental regression and aging parents.

In response to this challenge and with the support of the Southwest Autism Research & Resource Center (SARRC) and its Rising Entrepreneurs Program, our family created SMILE® Biscotti (an acronym for Supporting Matt’s Independent Living Enterprise) and home bakery business. Matt’s now a proud, hard-working entrepreneur, an employer and is contributing to the community through his food bank donations and so much more.

We are not just in the business of mixing, baking and packaging, but of spreading the word that individuals with different abilities can be valued, contributing members of our communities. We are also in the business of making people happy—the happiness that comes with hope. We’re talking about the promise of a future we can embrace, not the one so many of us anticipated when our children were diagnosed and we were told to “love, accept and make plans to institutionalize them.”

Matt at Peet's Coffee & Tea
Matt at Peet’s Coffee & Tea

We had bigger dreams back then and still do. In 1997, I co-founded SARRC with the bold mission of advancing discoveries and supporting individuals with autism and their families throughout their lifetimes. The year before Matt’s graduation, in 2012, I also formed a separate nonprofit to develop new and innovative housing options for adults with autism and related disorders, something I’ve been dreaming about from the first day the school bus arrived. First Place AZ continues the important work of SARRC, and importantly, separates the real estate ownership from the supportive services, creating more opportunities for choice.

Following nearly 15 years of research, travels, ideation and the benefit of thought leaders from Arizona and across the U.S., First Place is preparing to break ground in 2016 on its first model property, a residential community development sited in the heart of Phoenix. It will include apartments for residents, a residential academy for students and a national leadership institute for training professionals and support-service providers. The transit-oriented development is leveraging the benefits of a supportive urban area in Central Phoenix that will connect residents to jobs, friends, healthcare, lifelong education and their community.

I’m thrilled to be part of the Different Brains community; eager to share more about SMILE, First Place and life on this journey; and to continue learning many more lessons from Matt and you along the way!

Open. Four letters and a simple meaning. Open embraces and invites. It conjures opportunity and newness. And for many who may have feared closed doors, the fact that new ones are now opening also means hope. A very exciting development for adults with autism, 18 years and older, is now open for enrollment.

PHOENIX (November 20, 2014 -Updated 2016) – Adults with autism, 18 years and older, now have a new post-high school option. It’s called First Place ® and it’s being advanced in collaboration with the Southwest Autism Research & Resource Center (SARRC).  Students are now enrolling in the two-year First Place Transition Academy, which focuses on independent living skills, continuing education opportunities, vocational training and employment.

The First Place Transition Academy is being launched through a beta site at 29 Palms Apartments in Phoenix, which co-locates eight two-bedroom apartments for adults with autism and 13 affordable housing units for seniors. Residents will live at the beta site for two years and then transition into the community to live close to their family or job. They will also have the option to live at the First Place Apartments, expected to break ground in 2016, in Phoenix.

“This program is a comprehensive educational opportunity that focuses on functional life skills, paid work experience and course work to prepare the individual for a successful independent adult life,” said Jeff Ross, First Place program director.

Ross founded the nationally recognized Transition to Independent Living program at Taft College in California. Documented outcomes of the program include that 95 percent of graduates live independently, 89 percent are employed and 88 percent of graduates pay for all of their living expenses.

Orientation for living at 29 Palms begins in December. Classes begin in early January. The program at 29 Palms, overseen by SARRC, has three major components: teaching functional life skills on site, paid work internships throughout the community and independent living courses at GateWay Community College beginning in fall 2015.  Students must be approved for acceptance to the tuition-based program.

“Our focus is to help adults learn the skills they need so they may live where they want and as independently as possible, with access to the people, places, jobs and activities they prefer and that make them happy,” said Daniel Openden, president/CEO of SARRC.

Special features of 29 Palms for adults with autism include:

 

Interested applicants apply online and then undergo a life skills assessment conducted by SARRC and First Place. Annual tuition, which covers rent, classes, individualized services and activities, is $3,500 a month.

Developed by the Foundation for Senior Living and in concert with First Place and SARRC, 29 Palms was designed and renovated to meet the needs of individuals with autism. The renovation was made possible through a grant from the Arizona Department of Housing, a loan from the Arizona Community Foundation and other charitable sources. Del Sol Furniture is providing interior furnishings for the Transition Academy units.

The Arizona Department of Housing recently presented 29 Palms with the Brian Mickelsen Housing Hero Award for Outstanding Affordable Housing Initiative.

Adults with autism will live and learn at the beta site while the First Place mixed-use development is being completed. Envisioned as a replicable model to offer innovative housing, educate adults with autism on life skills and train service providers and other professionals, First Place combines three complementary components: First Place Apartments (for residents), First Place Transition Academy (for students), and First Place Leadership Institute (a facility for service providers, professionals and physicians).

“Backed by 15 years of research, First Place celebrates diversity, independent living and a path toward opening doors to more real estate options for individuals with autism and other special abilities,” said Denise D. Resnik, First Place founder and Southwest Autism Research & Resource Center (SARRC) co-founder.

About First Place

First Place is a nonprofit organization advancing innovative residential options for adults with autism and related disorders. Plans are underway for a mixed-use residential prototype for the individuals who live there, people who work and learn there, and family and friends that come and go. Led by private sector principles, First Place aspires to be a replicable model promoting collaboration among the private, public and nonprofit sectors, and a catalyst for advancing federal public policy focused on housing solutions for special populations.  First Place celebrates neuro-diversity, independent living and a path toward opening doors for more real estate options. For more information or to apply for the First Place Academy beta program at 29 Palms, visit www.firstplaceaz.org.

About SARRC

Established in 1997, the Southwest Autism Research & Resource Center (SARRC) is an internationally recognized nonprofit organization dedicated to autism researcheducation, evidence-based treatment and community outreach. We are one of the only autism organizations in the world that provides a lifetime of services for individuals and their families while conducting cutting-edge research. More information is at www.autismcenter.org.