A Steady Hand—and a Forever Home—for Loved Ones on the Spectrum

She was 80. I was 30 years younger. We bonded instantly as moms of adult sons with autism. Her heart forever touched my own as she shared her journey of moving her adult son 10 times into various residential properties, questioning whether First Place could be his “forever” place. She knew this would be the last time she would direct and accompany him for the move.

That conversation from a decade ago has stayed with me since—along with those from literally hundreds that have included mothers, fathers and people with autism and other different abilities—and helped guide the design and development of and all-important supports offered by First Place–Phoenix, which turns 5 this month. Erik Raschke, fellow father and writer, prompted that memory when he interviewed me for his recent Psychology Today blog addressing that daunting question, “What will you do when I’m gone?”

As year-end approaches, I’m particularly mindful that at First Place we recognized then and have living proof today that the local community is the optimum first place for our grown children to live after leaving the family home. For others, it may well be their forever place. And it is your ongoing trust and invaluable support that have catalyzed our collective efforts to make it all possible.

Through the First Place Global Leadership Institute, we continue working with pioneering and innovative leaders in our quest to fuel a marketplace of residential and community options as evidenced through semi-annual Institute symposia (the tenth this past October!) and ongoing research and represented in the most recent collaborative, comprehensive study titled A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities.

While all the dreaming, planning and developing spans decades (along with some requisite sleep deprivation), it’s been worth it. Today, our adult son Matt joins nearly 60 others currently living fuller and more independent lives than we ever imagined.

All those things we’ve pondered and worried about are now things we are advancing or well-positioned to address—like the seemingly small and not-so-small stuff like changing out Matt’s toothbrush every few days because he’s a “masher.” Learning how to shave without cropping off his sideburns, which is still a work in progress. Remembering to tell Alexa to add items to his shopping list. Doing laundry twice a week and cleaning his apartment weekly.

Then there are the really big things, like using a key. Knowing where to go for help if he loses that key or his wallet. Sending a GPS pin drop if he loses his way. And, for me, organizing all those important documents that have been stored and filed away for decades in notebooks and on my laptop thanks to an exciting, potentially life-changing new initiative underway with Amazon Web Services.

With Matt’s unsteady hands, the result of a lifetime of seizure meds, I’m still working on things like nail clipping and other seemingly mundane tasks that take, well, a steady hand along with an awareness that they need doing at all.

Communities are perfectly imperfect. Now more than ever, adjustments and course corrections are part of daily life. With all the uncertainty in our world, it’s important to be proactive, address priorities in the present and—as parents and family members—make sure our fingerprints are all over the homes and communities we desire for our loved ones and, most importantly, ensure it’s where they want to live, too. This is the essence of the peace of mind families crave and the reality of First Place as that forever home.

While no one knows what the future holds—and with more letters in the Greek alphabet potentially looming—we must do everything possible during our lifetimes to help our loved ones succeed and give them the chance to learn how to live more independently in supportive communities everywhere, including First Place. Then elderly parents, and so many others, won’t have to live with the burden of wondering when, where and how they will have to move their adult child—again.

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