(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