On the eve of my son’s 13th birthday
in celebration of John Henry.
We’re still here.
There were times I wasn’t sure we’d make it this far. I know we’ve had angels watching over us.
I’ve been thinking about John Henry’s birth for the past few days. Thirteen feels like a significant birthday, both for him and for me. I feel his desire for independence. I feel my own too — my desire for his, and for mine.
None of us know what we’re in for when we first become parents. If we were given a crystal ball to see how much anguish would be involved in our futures, most of us would probably back away and say no thanks. But I’ve been thinking these past few days about how much growing I’ve done since John Henry arrived. His presence forged me into a radically different person in so many ways.
I am grateful for him. His importance as my teacher can’t be overstated.
But at this hour, I celebrate him for who he is in the universe separate from me. He is a glorious young man — passionate, musical, happy, intelligent, funny, quicker than lightening; he is a thunderstorm of charisma, and he is calm like a mountain stream. I look at him and can only say WOW. It is my honor to watch him grow, and to guide him through the world.
No, we can’t possibly know the future. But I remember everything about what’s behind us. It hasn’t been easy to get here — as I said, there were times I wasn’t sure we’d make it this far. We’ve had some unspeakably challenging times.
But my boy makes my heart light up and he has every day since he was born. I know he always will. That’s crystal ball enough for me to be excited about where we go from here.
An autism diagnosis is never easy. It has defined life in a lot of ways for us since we received John Henry’s just over eleven years ago. My memories are infused with it, my tears are sometimes bitter about it, and my grief about what we lost is larger than I like to admit. Birthdays are markers of time that can increase anxiety — unfortunately, for a lot of people with developmental disabilities, life gets smaller with age instead of bigger like it does for most people. But I know that those angels that have been watching over us for all of these years will continue to keep us in their sights and will guide us toward home, whatever that is for us. We’ll keep hoping for the best possible outcomes and working toward the honest and good, and we will have faith that the right doors to the right paths will open when it’s time. I’m so proud of where John Henry is. He still has a ton of challenges. But there were days, even just a few years ago, when I couldn’t imagine how comparatively easy life would be today, on the eve of his 13th birthday.
I think about that essay in I Dream He Talks to Me — the one called “When He is Thirteen.” John Henry and I were living in a building on 24th St. in NYC, and our doorman, Alex, stopped me one day as I walked back in the building one Monday morning after I’d taken John Henry to school. He said, “I saw boys like him in my home country all the time. When he is thirteen, he will be okay.”
You were right, Alex. John Henry is okay.
Watch a video for a song we wrote about it:
And hear a whole EP about how cool he is.
And not for nothing, I Dream He Talks to Me comes out in paperback on April 11, next week.
Did I tell you we’re on spring break? We’ve trekked off into the mountains to meet some friends who also have a beautiful young man with autism. Life is good. We are blessed beyond measure. It’s nice to slow down and take a long look at the beautiful world in which we live, to take a long walk without worrying about when we’ll get back, to relax, breathe, and feel the gentle pulse of natural movements.
These colors! I brought my watercolors with me. I’ll see if I can sneak in some time for painting. I can’t thank y‘all enough for supporting my artwork. I’ll get new pieces up as I have time to make them. There is exactly one Mind, Body, Spirit piece still there right now.
It isn’t lost on me how lucky I am to get to watch my son turn 13. Not every parent gets to. Lots of love to Nashville’s Covenant School in the wake of such a tragic shooting last week. My heart breaks for them. We should be doing better than that.
Happiest of birthdays to my beautiful son.
Peace, Love, and Go Gently,
Allison
Happy Birthday to John Henry. A teenager. Wow. I've seen some of your pictures with him and he looks big. I have seen a Youtube video of your appearance on David Letterman and he is doing a back and forth with you about your new child. "a boy" he asks and how you are just beaming in that moment. What a thing. Love you and John Henry and all. 13 wow
Happy Birthday Henry!
I feel like I know him just a tiny bit from your writings and “Wish for You” which, when I was doing radio and played it, brought my heart way up in my chest. My sister has a student with autism who reminds her daily of why she does her job for much less pay than she could be making. These kids keep it real.
My heart goes to you and of course to Nashville. The neighborhood; its churches and schools are part of me. I am heartbroken and will continue to pray for more to be done to protect all children.