Time Flies

Volume 42

Our son, Andrew, turns 25 this week. How did that happen?!  In my mind’s eye, I remember his infancy and early youth like they were yesterday.  In reality, he graduated high school 6 years ago and often sports a five o’clock shadow by lunchtime.  He is a grown man who has dreams and passions, as well as spastic quadriplegia cerebral palsy.

Pre-covid, Andrew lived in his own apartment supported by professional caregivers. With help from his family, he managed his staff, schedule, transportation and community involvement. Mastering these skills has been no small undertaking, but Andrew learns more everyday…and so do we.  Because of the pandemic, Andrew returned home to live with us more than a year ago. He yearns for his independent life. And we miss it, too.

Independence means different things for different people. For individuals with disabilities and their parents, it means taking risks, learning to do things differently, and reducing our reliance on one another. As a very wise woman told me long ago, parents come with an expiration date.  It’s vital that we encourage independence in our adult children and prepare them for a future without us.

If only it were that easy.  Independent living options for adults with disabilities are too few in number and too high in price.  Government assistance is insufficient, and families often struggle with the increased financial burdens of caregiving in the home.   Changes proposed by the Biden administration don’t go far enough to help individuals with complex needs.  The stories are heartbreaking and far too common across the U.S.  We can and must do better.

In this newsletter, I try to highlight successful outcomes and spotlight families who are finding ways to thrive, despite the challenges of aging with disabilities.  Below are a few more that you may find interesting or wish to explore further.  Clearly one size doesn’t fit all. No matter where you are in your journey, however, I hope you’ll celebrate steps to independence whenever you experience them and plan for a future that fulfills the needs of both you and your “child.”

Although he’s been planning for weeks, Andrew’s 25th birthday crept up on me.  Amidst my disbelief, I find myself wondering what things will be like in another 25 years.  And so our planning continues, as does the joy and celebration.  Thanks for being here and sharing in the adventure.

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I always did something I was a little not ready to do.  I think that’s how you grow.  When there’s that moment of ‘Wow, I’m not really sure I can do this,’ and you push through those moments, that’s when you have a breakthrough.

--Marissa Mayer

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Home sweet home.

Tampa’s new affordable housing development, The Heights, offers residents the chance to live in style within walking distance to shops and other neighborhood amenities.  The complex’s developer utilized a number of creative strategies to create a property where 70% of the units are set aside for persons with disabilities, including seniors.  Annandale Village outside Atlanta offers a more comprehensive approach to independent living for individuals with developmental disabilities or acquired brain injury. L’Arche is a broad network of communities across the U.S. (and worldwide) where people with and without disabilities live, grow, connect and thrive together.  Three different approaches to fostering independence. How might you “imagine community differently”?  

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Between the pages.

This beautiful book is the perfect gift for yourself or those you love.  Enjoy the following “read aloud” to get a feel for a truly special graphic novel about kindness, empathy, perseverance and love.  Here’s a longer news segment, which is how my family found out about this extraordinary author and artist.  So many kernels of wisdom shared.

Melody’s Magical Flying Machine is another sweet read where the main character is a 10-year-old girl with Down syndrome.  This beginning chapter book for people with a guided reading level of P (Lexile 650) is creative, clever and truly compassionate.  I spoke recently with author Elaine Ambrose, who said that a personal friend with Down syndrome inspired her to create Melody and her special story. “I wanted to show that a child with special needs can combat bullying, use technology, and have big dreams,” she said. “Melody is filled with strength and joy.  And we all need more of both.”

Life is in the Transitions explores the non-linear nature of our lives. Author Bruce Feiler asserts that living life out of order, as we all do at some point, enables us to slow down, free ourselves from expectations and make better meaning of what we’re experiencing.  Sub-title is “Mastering Change at Any Age.”  How can you argue with that?  

What are you reading these days?

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Worth 1,000 words.

Spotted on the streets of New York last week. How’s that for accessibility?!

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Special thanks to those who share this newsletter, comment, and send me personal feedback.  It means a lot.   Also appreciate your hitting the heart button at the end of the email, which helps people cut through the clutter and find us on the internet 🖤.

Until next week…

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