My granddaughter is severely disabled. Her father has never left her side, has always been an active advocate. In their circle, none of the fathers have left. I would not use the word disappointed, but rather sadness. Sadness surrounds these families of kids with CDKL5 Disorder, and sadness still unexpectedly fills my heart when I am with her. Sadness for what she will never get to experience, for the things we think would be great for her to experience, the things that we got to experience as children. Sadness when she cries and screams for days and nights on end, because she cannot tell us what she needs, and neither can the docs. Sadness that she cannot see what we get to see, only a little in her periphery. Not disappointment, but profound sadness. And joy, too, when she finally was able to sit on her own at three years old, and is now trying to reach for things at age six. Joy when she smiles and laughs, and especially when she gives you one of her all-embracing hugs. I loved the AC/DC part of your story. :-)
This is a wonderful piece of writing, about wondrous things, which does not wander off into faked piety. You called bullshit on yourself, not just on how the world often works. Yet there's no cynicism, and you made me catch my breath, too; and feel a pang of self-recognition (not self-pity) and the shot of regret that often follows.
Exactly because you didn't need me to, as far as I could tell. (Or at least, you didn't nudge me hard to do so.) I don't think you saw me coming. And I certainly didn't expect to read anything like this on a Tuesday morning, when I was supposed to be doing Meaningful Work for Money.
Thank you. It's memorable writing. And who wants to waste a moment of his short life reading forgettable writing?
First: "Man, you haven't lived until you've heard a dozen Asperger's kids singing heavy metal." Loved that! An amazing visual (with audio ;-) ). And I also loved the unsentimental but warm ending of this story--how it refuted all the usual phrases one hears in the best way. Anyway, thank you!
Wow, beautiful story. My husband and I work with special needs children in an elementary school. This work is not for everyone, but it’s work for us and work that we love. Your story touched the heart of it all. Thank you.
“‘Slow means love…’” how far that advice would go in these times! I used to counsel kids on the spectrum. We were always journeying together. Thanks so much for the warmth, candor, and beauty of this story.
Maybe fiction, but there’s a wonderful organization here in FL called Pyramid which in a school environment exposes special needs young adults (many autistic but also other syndromes) to art, music and theater. It literally is transformational. Your story rings so true.
I recently went to work as a day support person for a behavioral health company. My daily client is 36 with an IQ of 40 and Prader-Willi syndrome. She is my teacher, the catalyst for becoming aware of my expectations of other people. She was one of the kids who rode the short bus until she aged out. I feel your pain. I am 70 and social security does not cover everything. I ran out of my savings and don't have a pension. I didn't have to live in the conditions you do but I came close.
“My silence was the best way to honor them. I could only disappoint them with my words and they were already surrounded by disappointments that were munching on thistle with herds of other disappointments.”
“They're not my teachers and I'm not theirs. We're learning the routes together.”
One never knows what surprises come, when someone opens their mouth to speak .I love this made up guy that lives in your mind. He deserved to receive a few nice words in the middle of his work day. What a good soul he is.
I really loved it! As a high school teacher, I see some of those kids. How you imagined their mothers and fathers sounds pretty spot on to me. I feel for those parents all the time. I was so lucky to have had three healthy "normal" kids and have often wondered how I would have reacted to having children who were not "normal". The book sounds very interesting!
Loved it
My granddaughter is severely disabled. Her father has never left her side, has always been an active advocate. In their circle, none of the fathers have left. I would not use the word disappointed, but rather sadness. Sadness surrounds these families of kids with CDKL5 Disorder, and sadness still unexpectedly fills my heart when I am with her. Sadness for what she will never get to experience, for the things we think would be great for her to experience, the things that we got to experience as children. Sadness when she cries and screams for days and nights on end, because she cannot tell us what she needs, and neither can the docs. Sadness that she cannot see what we get to see, only a little in her periphery. Not disappointment, but profound sadness. And joy, too, when she finally was able to sit on her own at three years old, and is now trying to reach for things at age six. Joy when she smiles and laughs, and especially when she gives you one of her all-embracing hugs. I loved the AC/DC part of your story. :-)
Thank you, Sherman.
This is a wonderful piece of writing, about wondrous things, which does not wander off into faked piety. You called bullshit on yourself, not just on how the world often works. Yet there's no cynicism, and you made me catch my breath, too; and feel a pang of self-recognition (not self-pity) and the shot of regret that often follows.
Exactly because you didn't need me to, as far as I could tell. (Or at least, you didn't nudge me hard to do so.) I don't think you saw me coming. And I certainly didn't expect to read anything like this on a Tuesday morning, when I was supposed to be doing Meaningful Work for Money.
Thank you. It's memorable writing. And who wants to waste a moment of his short life reading forgettable writing?
First: "Man, you haven't lived until you've heard a dozen Asperger's kids singing heavy metal." Loved that! An amazing visual (with audio ;-) ). And I also loved the unsentimental but warm ending of this story--how it refuted all the usual phrases one hears in the best way. Anyway, thank you!
Wow, beautiful story. My husband and I work with special needs children in an elementary school. This work is not for everyone, but it’s work for us and work that we love. Your story touched the heart of it all. Thank you.
“‘Slow means love…’” how far that advice would go in these times! I used to counsel kids on the spectrum. We were always journeying together. Thanks so much for the warmth, candor, and beauty of this story.
Beautiful – I see this guy, I feel his soul, in the simple language and perfect observations. Thanks.
Thank you!
Thanks, Sherman. I’m so happy to be reading your writing again. I’ve missed you.
Thanks, Linda.
That was beautiful. Thank you.
Thank you, CC.
Oh! Sherman Alexie! I’m so happy that I found you today (July 7)! I needed your infusion of joy!
With the depressing political events of the past week and the ensuing hysteria, it’s great to be brought back to reality by your Substack post.
THANK YOU! This 40-year educator will be following you!
Thank you, Carolyn! I'm happy you're here.
Maybe fiction, but there’s a wonderful organization here in FL called Pyramid which in a school environment exposes special needs young adults (many autistic but also other syndromes) to art, music and theater. It literally is transformational. Your story rings so true.
Thanks, Janice. Yes, I have experience with various special needs organizations.
Absolutely beautiful! Thank you.
Thank you, Hugh.
I recently went to work as a day support person for a behavioral health company. My daily client is 36 with an IQ of 40 and Prader-Willi syndrome. She is my teacher, the catalyst for becoming aware of my expectations of other people. She was one of the kids who rode the short bus until she aged out. I feel your pain. I am 70 and social security does not cover everything. I ran out of my savings and don't have a pension. I didn't have to live in the conditions you do but I came close.
I'm sorry to hear of you struggles. This story of mine is fictiom.
“My silence was the best way to honor them. I could only disappoint them with my words and they were already surrounded by disappointments that were munching on thistle with herds of other disappointments.”
“They're not my teachers and I'm not theirs. We're learning the routes together.”
One never knows what surprises come, when someone opens their mouth to speak .I love this made up guy that lives in your mind. He deserved to receive a few nice words in the middle of his work day. What a good soul he is.
Thanks, Lor!
I really loved it! As a high school teacher, I see some of those kids. How you imagined their mothers and fathers sounds pretty spot on to me. I feel for those parents all the time. I was so lucky to have had three healthy "normal" kids and have often wondered how I would have reacted to having children who were not "normal". The book sounds very interesting!
Thanks, Neil. Yes, I'm very familiar with the special needs world so drew on experience.