The Ever-Changing Path to Independence—Step by Step
August 31, 2023
By: Denise D. Resnik
Our 32-year-old son, Matt, has what I call “classic” autism. With limited communication and social skills — and generally unaware of danger — he struggles to let us know when something isn’t quite right. Occasionally, he suffers from tonic-clonic seizures that are unpredictable and can result in a medical emergency.
But Matt also has a lot going for him. He’s sweet, smart, friendly, and highly adaptable. A very hard worker, he will complete without fail whatever tasks are on his daily schedule. He works, volunteers, and stays active with games, exercise, and cooking. His work life has been focused on SMILE Biscotti (Supporting My Independent Living Enterprise), a business our family created a decade ago upon his high school graduation. SMILE has helped Matt hone his kitchen, social, and organizational skills.
Five years ago, Matt started living at First Place–Phoenix, a consumer-controlled, supportive residential community development for adults with low-to-moderate support needs situated in the heart of what PBS NewsHour acknowledges as “the most autism-friendly city in the world.”
The First Place Apartments offer studios and one-, two-, and four-bedroom suites for nearly 70 residents. The four-bedroom suites are reserved for participants in the on-site Transition Academy, a two-year tuition-based residential program empowering young adults with independent living, career readiness, and interpersonal skills. The broad mix of people, abilities, diagnoses, interests, and ages (from early 20s to early 50s) contributes to this vibrant community.
Supported by a portfolio of independent living services, property amenities, and smart-home technology, Matt and his neighbors learn how to live with greater independence. Support specialists, along with a spirited community life team, workplace and community inclusion specialist, 24/7 concierge, and health and wellness staff all collaborate to assist, teach, guide, and encourage residents.
While Matt’s communication is more challenged than most of his neighbors, he’s also one of the more independent residents based on his ability to learn, as well as his compliance and diligent attention to problem solving. He is also assisted by third-party providers, including Southwest Autism Research & Resource Center (SARRC).
Transitions don’t happen quickly or easily for many people. It takes planning, guidelines, and teamwork. Dreaming about Matt’s future home allowed us to start his transition long before he moved into First Place–Phoenix, which included designing his home, getting his seizures under better control (no easy task!), and familiarizing him with the area by accessing public transit just three blocks away.
Most importantly, we wanted a place where Matt would be happy, healthy, and comfortable —with an able staff and neighbors who have fun and look out for each other.
The transition process began while he was in high school. Here’s a sample checklist:
Throughout the transition to the present, trial and error has helped us figure out what works best for Matt. Natural consequences are powerful lessons for everyone. For example, when he first started shaving, he kept nicking his face despite months of practice and faithfully following the detailed 16-step laminated process checklist taped to the bathroom mirror. We then experimented with electric shavers before choosing his current one, reducing the number of steps in the process. This underscores one of many chapters representing a series of right turns, left turns, U-turns, and we-don’t-know-which-way-to-turns. Along the way, we have found that it’s important not to let expectations of perfection — and our issues as his parents — get in the way of progress.
My husband and I have put Matt’s systems and those at First Place to the test by taking a few trips to celebrate special occasions. Recently, an ambitious plan for a trip to Ireland fell apart (due to circumstances beyond our control) while all of Matt’s systems — including First Place and family support — worked perfectly! Read about our unexpected path to Ireland.
Beyond Matt’s daily and monthly schedules, Alexa’s reminders, and other tech-support tools — including camera apps and Facetime — this trip abroad necessitated updates to our letter of intent, summary of his daily life, wills, and more. It also tested our confidence. The beautiful interdependence of First Place–Phoenix staff and family members who all supported Matt during our shorter-than-expected travel is a testament to the collaboration it takes to navigate this tricky trail.
Matt spends weeknights at First Place–Phoenix and joins us for weekends at our family home. We value time with this lovable man, hiking, working out, swimming, baking, doing chores, testing out new skills, and setting new benchmarks for continued progress. Years of IEPs have helped us appreciate the value of goal setting and the fact that Matt continues to learn at every age, just as we do. Matt is also a skilled Scrabble player, more focused on tying the score and less on winning the game — a wonderful lesson for us all.
While we can’t claim that everything is perfect (who can?), we know that’s life and that navigating the predictably unpredictable strengthens abilities, systems, and routines.
As parents, we also know that we never stop worrying about our kids. Confidence in community makes a world of difference, starting with trust in the First Place–Phoenix team and Matt’s supportive neighbors and friends, who have taught him many things along the way — most recently how to play Mario Kart.
As the next chapters unfold, we continue preparing for Matt’s daily life and beyond. We know things change. Who among us is still working at our first job, living in our first home, or lucky enough to still be with their first true love? (I proudly claim that last one!) We also appreciate the importance of ongoing efforts to build our supportive community here in Greater Phoenix while helping others across the country do the same. There’s strength in numbers — and important lessons to learn together along the way.
Denise D. Resnik is the founder, president, and CEO of First Place® AZ, a charitable nonprofit real estate and community developer focused on individuals with autism and other neurodiverse populations. She was inspired to start First Place for her son, Matt, who was diagnosed with autism at age 2. In 1997, she co-founded the nonprofit Southwest Autism Research & Resource Center (SARRC). She is also the founder and CEO of DRA Collective, a Phoenix-based public relations, marketing, and communications firm. Her board affiliations include the ASU Foundation and ASU’s Watts College Dean’s Council, Home Matters® to Arizona, and The Precisionists, Inc.