Sharing and Caring

May 10, 2024

November is National Family Caregivers Month. Yeah us! Did you know that more than 40 million Americans provide care for a loved one who has a disability, is chronically ill or is aging? According to the National Center on Caregiving, family caregivers spend an average of 21 hours per week providing unpaid assistance to loved ones. Many of you may spend more than double that amount of time helping someone with a disability. And perhaps aging parents, too. Unfortunately, the pandemic has only made your jobs harder.

A new book entitled Sit Down to Rise Up speaks to the role that self-care plays in helping us care for each other and the world, too. It reminds me of why taking care of ourselves as caregivers is actually a gift to those we love. Essential rather than indulgent. Recent legislative support of President Biden’s Build Back Better campaign offers some hope for family caregivers. But we must be diligent about recognizing the toll that caregiving takes on parents of individuals with disabilities. We must educate our elected representatives so they understand our version of normal and the needs of our families and growing children. Importantly, we must also support each other as we seek to take care of ourselves and those we love.

A new app called CircleOf is specifically designed to help you do just that. It provides tools to organize, collaborate, and ask for assistance when managing disabilities, chronic illnesses and more. You can download it here for free. Please let us know what you think, or if you have other recommendations for lightening the caregiving load. And don’t forget to celebrate yourself…this month and always. 

Maria Shriver

Fathers, Mothers, Selves.

Parents who are also caregivers for their children with disabilities experience another normal almost daily. While I know all about this from a mother’s perspective, I readily admit that a father’s experience is often completely differently. Perhaps that’s why I’m intrigued by this father’s account of his learnings about “the moral potential of caregiving.” I would like to read his new book, and am captivated by some of the questions he poses in his writing. How does parenting transform us? How does it help us make meaning of our lives? How can we use this learning to help improve the world? These are things worth thinking about and exploring, I believe. And all the amazing fathers out there, especially the one I know and love best, are worth thanking. Again and again.

Father/son photo from the late nineties, I think. An oldie but a goodie!

Dream achievers.

Yesterday, our son with disabilities sent me an email to say thanks. “Here’s to being a part of the life I have always dreamed of,” it read. I’m still giddy when I think of how great he must feel to type these words. While we certainly don’t have all the answers for him or ourselves, I am keenly aware of just how much his independence means to him. For others who may yearn for a supported life “on their own,” here’s another example of what some parents are creating with Damar Services in Indianapolis.

NOTE: I spotlight various programs and services in this newsletter so parents, caregivers, educators and others might learn from them. Reference here does not imply my personal endorsement, nor have I received gifts or payment to feature entities in this newsletter. My intention is simply to make people aware of what’s happening throughout the U.S. and elsewhere to create community, employment and opportunity for others. Please reach out anytime if you have something you’d like spotlighted.

Contact Kris

Let’s get loud.

Speaking of dreams, here’s a great story on the importance of self-advocacy and peer mentoring. Often, children with disabilities struggle with learned helplessness. When the world isn’t hard and cruel, it sometimes offers too much support. Well-intentioned family and caregivers can actually inhibit the growth and development of self-advocacy skills, which are vital to a happy and rewarding adult life. What can you stop doing for your growing or adult child with disabilities? What can they learn to do for themselves? How do they feel about taking on more responsibilities as they get older? Might this be worth exploring?

Lunch and learn.

I know they’re unhealthy, but I loved eating Twinkies as a kid. Just the thought of getting two treats in one package made my lunchbox feel extra special. Thursday, November 18th, is a two-for-one training day. Although not as delicious as my old Twinkies, these upcoming webinars may be helpful to you or someone you know:


12:30-1pm EST — Learn about tools and resources to help guide decision-making as a person with disabilities moves into adulthood, including power of attorney, conservatorship, self-advocacy and person-centered planning. Understanding our choices and how to maximize independence for our children as they grow is challenging. Register here if you’d like help learning more from CT-based experts.

1-2pm EST — Join representatives from Texas’ Brookwood Community to learn about this faith-based community outside Houston. Brookwood celebrates individuals with I/DD and offers individualized services and supports to help them create fulfilling lives. Together for Choice offers regular “take a look” programs like this one to help families learn about different housing and living options for adults with disabilities. One size does not fit all, so learn we must, right? Register here.

Fan mail.

A special thanks to those who reach out and share suggestions for future issues of this newsletter. I really appreciate hearing about what matters to you and am truly grateful for your encouragement and praise:

You find the coolest people, places and groups to share in your newsletter.  I love it!

Thanks for thinking of sharing what you've observed and learned from your experience with other parents. It is a good idea and a generous choice. I hope the best for your seconds, minutes and days forward and admire your strength coming from adversity+love. You have inspired this mom! 

Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, sign-up for your own copy below. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet.

Until next time…

Interested in learning more about one-to-one coaching? Contact Kris for information on what this might look like for you, including outcomes, availability, fees and more.

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