(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)

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

By Valerie Paradiz, PhD, First Place Curriculum Specialist

As a person on the spectrum and as a parent of a 24-year-old son with autism, I like to take time during Autism Awareness Month to reflect on the amazing accomplishments our community has achieved. Like the inevitability of spring, I have grown to trust our resilience in seeking and finding answers to the challenges that we face together. For example, we know so much more about educational methods in 2015 than we did when Elijah first began early intervention more than 20 yeas ago. As his generation has grown into young adulthood, it’s very clear that we are embarking on yet another journey toward solutions. This time, the solutions we find will be in adult services. How will we create enough housing and jobs? How will we develop supports that allow the remarkable diversity of spectrum adults to thrive across the life span?

I keep an eye out for such solutions, just as earnestly as when I looked for the first snowbells in spring. One treasure I have found is First Place Arizona, a new, mixed-use residential community for adults with autism and other special abilities, located in the heart of Phoenix. I recently had the opportunity to spend the month of March at First Place’s beta-site, 29 Palms, where 12 young adults with autism will be living and learning together in a multigenerational apartment community that includes seniors as their neighbors. If it’s possible to find a snowbell in the desert, then First Place is it.

The beta site at 29 Palms is the result of more than a dozen years of research and community development led by First Place founder, Denise Resnik. Like me, Denise is also a parent of a young adult on the spectrum. She has a stunning track record of excellence, having co-founded the Southwest Autism Research & Resource Center (SARRC), serving as its visionary leader for nearly 20 years. SARRC is collaborating closely with First Place and is operating the Transition Academy program.

I felt honored to join Denise’s team at First Place to co-develop a two-year curriculum for young adults on the spectrum who are leaving their parents’ home for the first time. This curriculum is the backbone of the First Place Transition Academy, and as you’ll see in the video, the guys living at the beta site are thrilled to be living in their first place, while learning all the skills they need to do so. First Place is not a group home, congregate care, a licensed facility or an institution! It is wholly different from the models that we have known from the past in housing and adult services and transcends some of the entrenched approaches to support that have become broken or that simply do not work for people with autism.

As the beta site gets underway, plans for constructing First Place are also moving into full swing. First Place has launched a $25 million capital campaign representing a mix of philanthropy, impact investment loans and a New Markets Tax Credit, further demonstrating nonprofit, private and public collaboration. Momentum is building and a year-end campaign completion is expected. 

In addition to the Transition Academy for 32 students annually, First Place will house a Leadership Institute empowered by centers for training and education, real estate, research and public policy. Additionally, First Place will co-locate 50, one and two-bedroom apartments on the property for adults with autism and other special abilities, and resident graduate and doctoral student fellows.

Please join us on this groundbreaking journey… Learn more at www.firstplaceaz.org and follow us on FaceBook too.

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.