Questions + Answers

From Sam in Buffalo

I bought your audiobook, “I dream he talks to me.” I'm disabled, have cerebral palsy, and in my 40's. I loved your facebook live streams, many of them I attended. Question: How's your son doing?

Thanks, Sam - buffalo ny

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Dear Sam,

You certainly know how to get your question to the top of the queue! I think everyone likes to talk about their children and I am no exception.

My son, John Henry, will be 13 in April. That’s hard for me to believe — time goes by so quickly, and at the same time it feels so long. What’s the saying — years are short and days are long? I think that’s parenting wrapped up in seven words. Anyway, John Henry is very well. He is taller than I am — I think about 5’9” now — and is well into the throes of teenager-dom. His voice has changed, his feet are size 12, and he puts his arm around my shoulder on a regular basis, which of course melts me. He is kind hearted, observant, intelligent, loving and friendly, healthy and hardy, and autistic.

Practically speaking, though John Henry still struggles to overcome his severe speech disability, he continues to improve at making his needs and wants known through means other than spoken language, and that’s where we put our focus on a daily basis because not being able to communicate easily is a huge hurdle for him in this world.

Having said that, life isn’t all about practicalities in my opinion. As his Mama, my mind often goes to what I think are the deeper issues: how content is he? Does he have peace in his heart?

I think that even when our children can speak to us directly, we don’t always know the answer to those questions. In my case, I can only know by observing my son as closely as possible. When I do, I see someone who is securely attached to his family, someone who is loved and cared for in his school environments, and someone who is being lovingly guided on his path in this universe. The peace and contentment questions I cannot directly answer, but my feeling is that John Henry is closer to the spirit world than most of us get to be in this earthly realm in which we travel, and I hope that brings him peace and understanding about his experience, which is his and his alone.

I knew that when I decided I Dream He Talks to Me was finished, it was only a pause. One of the problems with making art about our personal experience is that things change — a memoir is simply a book about piece of time or experience and about that piece of time or experience only. There are few things definitive about them, in my opinion, except that they are true for the writer when they are written. A lot has changed since 2020, when the book was finished. Some of the challenges we faced on a daily basis at that time have become, if not non-issues, then certainly less important things than they once were. That happens naturally, of course, but that is also due to John Henry’s hard work and the dedication and support of his teachers and his family. Other issues loom closer than they did — friendships, independence, trajectory — and that’s natural too. I have faith that John Henry and everyone who loves and cares for him will continue to navigate those issues with good intentions. And that’s the best that he and anyone else can do.

I will end with this — I’ve never known a more loved and treasured boy. He is my teacher and I do my best to honor him as such. I’m grateful to him for the changes his presence has demanded I make in myself in order to live up to the kind of parenting, partnership, and true love that he deserves.

All in all, John Henry is good. Really good. Thanks for asking.

Love,

Allison

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