What Comes Next?
I'm working on a new book, and I need your help! {Plus 3 fun things, 3 things worth your time, and 1 thing I'm pondering}
I’ve had a few different book ideas percolating for a while now, and I would love your help as I work to bring the next one into the world. For the past fifteen years or so, my books have released every three to four years.
My writing cycle typically involves:
Year One: waiting for an idea, then sitting with the idea and trying it out in small ways, like social media posts and essays
Year Two: writing a proposal and finding a publisher
Year Three: writing the book itself
Year Four: talking about the book and learning so much more along the way
To Be Made Well came out three years ago, so I’m already behind in this process. I do not have a publisher for whatever comes next, but I also find myself with a backlog of ideas for at least three new books in my head!
Still, I’ve decided to turn my attention toward a book for parents and caregivers of children with disabilities who want to know that their family matters and that they can take the next step toward a good future. The book is based on my Reimagining Family Life with Disability workshop and has three main sections, which should equip readers to:
Delight in your child
Connect to community
Take the next step toward a good future
I’m still in the early stages of drafting a proposal, chapter outline, and writing this book. And that’s where you come in.
If you are a parent or caregiver of a child (of any age) with a disability (of any type), what are your top three questions about reimagining family life with disability? (If you need more prompts: What feels impossible to you right now? What gets in the way of imagining a good future for your family? What would help you believe a good future is possible?) Leave a comment!
I would love to hear from you (and/or from your friends—please share this newsletter with people who might be willing to respond). I’ll keep you posted on how this process goes. Thank you for your thoughts and questions!
—Amy Julia
P.S. Keep scrolling for 3 fun things and 3 things worth your time, plus what I’m pondering these days.
GoodHard Story Podcast
It always fills my cup to have a conversation with Katherine Wolf. This time we got to talk about how we adjust to a “new normal” after an unexpected diagnosis. We talked about what the good life is all about, about reimagining family life with disability, and about practices that help us hope for and walk toward a good future.
3 Fun Things
Beauty
The flowers in late May and early June startle me with their intense beauty every single time. As it happens, I inherited a beautiful flower garden that I neither planted nor nurtured, and yet I am the recipient of its beauty for months on end.
Sparkle Show
Penny decided to participate in our new church’s Sparkle Show with a friend by singing along to Taylor Swift’s Fearless. It’s no small thing that she wanted to be there, or that we’ve happened upon a church that has a vibrant group of young adults with disabilities who enjoy one another.
Staying Present
The other day, I was stranded in a small town just waiting for William to finish up an exam, pack his dorm room, and summon me to drive him home. I had work to do. I had books to read. But I also had an unexpected few hours in the late afternoon, when I’m usually driving carpool. I’m not much of a wanderer by nature, but I decided to wander. I happened upon an old rail trail, and I was given a few minutes to soak in the expanse of blue sky and the abundance of purple and white phlox. And it all reminded me of the truth of all the wise people who have gone before me and encouraged me to stay present to this moment and wonder at the gift of it all.
3 Things Worth Your Time
SHORT FILM: Loneliness Isn’t Inevitable—See Why
Loneliness is a public crisis.
Friendship is a choice.
I just watched this 6-minute short film from L’Arche. It’s taken from over 18 hours of recorded reflections on loneliness and friendship, and it captures so well both the painful, awkward, heartbreaking experience of loneliness and the heartwarming, connected, surprising joy of friendship. L’Arche communities help create friendships across the social dividing lines of intellectual disability. There’s one man in the film whose words struck me the most. He said that “friendship is being chosen, not scheduled.” This film is an invitation for all of us to choose one another and be present to love.
RESOURCE: Space to Process by Sarah M. Spear
If you are a parent of a disabled child, and if you also like to process your thoughts and feelings by writing, Sarah Spear has offered a wonderful resource. She shares very short vignettes from her family’s life and then offers questions for reflection.
DOCUMENTARY: The Speed Cubers
This short Netflix documentary follows the competition and friendship between two world-champion Rubik's Cubers. One of them, Max Park, is autistic. I was drawn to their story because Max’s parents have talked about how they didn’t introduce him to cubing so that he could become a champion. Rather, they realized that solving a cube was a way for Max to develop motor skills, and then, through competitions, to develop social skills. Even more, Max developed friendships and empathy. It’s a beautiful glimpse of what happens when we as parents notice our kids’ interests, passions, and strengths rather than focusing on their deficits.
1 Thing I’m Pondering
Cinderella syndrome. I coined this phrase in conversation with my counselor a few years ago. I suffer from Cinderella syndrome every time I feel like I can’t do what I really want to do unless I get all the menial chores done. And, beyond that, I know that the only way they will get done is if a fairy godmother and some enterprising mice show up to help. Whenever I feel this way, it’s a signal that I need to pause and reflect. Usually, I’m overwhelmed by tasks. And usually, I’m resentful of various members of my family for not helping with said tasks. And usually, I can either ask for help, let things go, or simply wait to accomplish those tasks.
What are you reading, watching, or listening to these days?
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I loved listening to your conversation with Katherine Wolf this week! We are at the beginning of our journey with our daughter with disabilities (physical and intellectual) as she is still a toddler, but I guess the questions I am currently pondering as we think about the future are 1.)to what degree do we pioneer a space for her that has what she needs where we already are (or want to go)—both in resources and community—and to what degree do we find them elsewhere? I guess what I mean is: when do we create the structures and when do we go looking for them, whether through a physical move or through commuting to places where they already exist? 2.) To what degree is it important for our family’s community to include others who are also navigating disability?
All of the above! Reimagining Adulthood is so key, especially with busy and high achieving siblings. Anxiety and fears, in the context of living and loving in the moment. Trusting and building community when it can feel so exhausting- with the ebb and flow of therapists, teachers, caretakers, the emotional energy that comes from attaching and then grieving loss is exacerbated for kids/adults with special needs…and the family caretakers finding and nurturing friends and community both with and without their loved one with IDD. Staying strong and physically healthy. Nurturing marriage. How to separate from loved one with iDD to allow for true independence without mom and dad? So many relevant and important topics!! Thank you Amy Julia!! Betsy