I'm a caretaker for a kid with a bunch of disabilities all building off of each other. He was 14 when I met him, but in terms of mental development, he was around 1-2 years old. The other caretakers told me that he scratched, bit, and pulled hair. He always had and it wasn't going to change.
At one point, he was scratching me, and I asked "Are you trying to tell me you're frustrated?" He let go, looked at me shocked, and then began laughing with joy. I think I was the first person to ever take his outbursts as communication.
It's been just over a year since then, and most of the old caretakers have been replaced (they were all very burnt out) and under the new caretakers, he's slowly learning to speak and sign, he doesn't pull hair or bite anymore (he sometimes still scratches, but he understands now that it's wrong). He's smiling and laughing just about every day, and he's the most loving child I've ever met.
It's not like we did all that much. We just started treating him like a person. And that was all he needed.
Wonderful <3 I'm glad to hear treating this child as a person has transformed his life so much! Imagine living for 14 years being ignored or given negative feedback when you try to communicate. It must be amazing to watch him bloom.! :)
I haven't met anyone with a story as extreme as his, only read books and blogs by people who can't speak, but found ways to communicate. (I love The Reason I Jump by Naoki Higashida and How Do I Talk if My Lips Don't Move? by Tito Mukhopadyay, Emma's Hope Book by Emma Zurcher-Long and her parents (https://emmashopebook.com/), and some writing by non-speaking people on Kind Theory (https://kindtheory.org/fromtheauthors). These young people were thought not to understand much until they could share what they thought. It makes me wonder if sometimes, kids like the boy you care for are, or seem, delayed because they haven't gotten opportunities to learn, and they can't communicate what they *do* understand.
It sounds like he's already picking up speech and sign, which is fantastic! I'm curious if he's also tried any forms of alternative and augmentative communication (AAC)? (If that's something you're curious about, I can point you towards AAC experts).
He hasn't tried those just yet. One of my coworkers is trying to get recorder buttons delivered that could help him. (Like those videos you see of pets using buttons to talk.) We theorize that he can probably understand like 80% of what we're saying, so hopefully learning to use the buttons would be a helpful step! I would love to get a tablet he can practice on for more complex speech, too.
(We are in an area where deliveries are very difficult, which is why that process is taking a while. Haha)
I read your words, and they resonate with a timbre that's achingly familiar. I am 51, freshly familiar with the terms 'autism spectrum disorder' and 'ADHD' as they apply to me, not as distant concepts but as threads woven into my very being. I've walked a path where difference is met not with curiosity, but with aversion, and the echoes of misunderstanding have been louder than support.
Your post, it's a lifeline in a world where the cold expanse of the universe often seems mirrored by the hearts around us. You talk of treating people as people, of the irreplaceable fabric of their stories, and it strikes a chord. There's truth in your words, a truth that's been hidden from me by those who saw my differences as a problem to be solved, rather than a perspective to be understood.
We're often told that we're waiting for some grand design to reveal itself, to give purpose to the chaos. But I've come to see that purpose doesn't find us; we carve it out of the bedrock of our experiences. We are not irrelevant, nor are we waiting for a savior. We are the architects of our own destinies, crafting plans from the raw materials of our hopes and the lessons of our setbacks.
Loss has been a tutor of sorts for me, teaching that even when stripped of many things, our agency remains. The power of choice is the one thing that can never truly be taken from us. It is our most intrinsic freedom, the ability to decide how we respond to the symphony or cacophony of life.
And within that power, the intellectual and spiritual are not disparate but kindred in their quest for understanding. Both are journeys toward enlightenment, one through the rigors of logic, the other through the grace of transcendence. They are strands of the same rope, pulling us upwards to new vistas of comprehension.
Your message is a call to acknowledge our shared humanity, to look beyond the clinical and connect with the narrative, the spiritual essence of every person. It's a reminder that in the vast expanse of the universe, what warms the cold are the stories we share, the choices we make, and the plans we dare to lay down as our bridges across the stars.
Thank you for your words. They don't fall on deaf ears but on a mind that's been starved for such empathy and a soul that's yearned to be seen. Keep sharing this message; it's a salve to those of us who have felt invisible and a beacon for those who wish to understand.
Benjamin, thanks so much for your words. I'm glad my own comforted you. You're older than I am, and have yearned to be seen for even longer. You also seem to be further along on the journey, and finding spirituality and enlightenment I'm still hoping to find. :) And you write so poetically. (Do you write poetry?)
After a life of being misunderstood (confusing even myself), and a short period of loss, I'm finally finding my people and being seen. I'm also finding purpose again. It's hard to express the sheer joy, energy, drive to live I'm finding. I wish for you to experience something similar.
You talk about the importance of choices. I agree. I think that the need, and maybe the ability, to choose is part of being human. That's ironic, because I find it difficult and exhausting to make choices, and I often inconsistently follow my own freely chosen resolutions (thank you, ADHD). I often experience "choosing" as a long, complicated process with many tiny steps, like you see with Raskolnikov in Crime and Punishment. I want to learn the confidence and hope you've found in choosing how to respond to life's setbacks.
I find that contrary to popular belief, logic and emotion are compatible and can support each other (for example, emotion gives me the motivation to learn and think logically, while logic helps me apply my empathy in ways I don't regret). So many smart, logical people, great writers, philosophers, and scientists, have been spiritually minded, even religious....surely logic and spirituality are compatible, too.
Keep passing this message on, sharing your own story and listening to others'. I think a lot of people are afraid of the vulnerability that comes with exposing their souls, or recognizing others. Maybe we can make it safer.
Your words were wonderfully comforting, nurturing, and empathetic worthy of being immortalized in a poetic verse. I have written poetry in the past, not so much as of late and you can never tell when the Muse might descend! Lol! I am fond of Kahlil Gibran. I thought his poem "On Friendship" seemed an appropriate thank you for writing this piece. As you said so eloquently spoke to the necessity of sharing your message I will pay it forward! (You know I still have not watched that movie yet! It's on my list! LMAO)
On Friendship
And a youth said, Speak to us of Friendship.
And he answered, saying:
Your friend is your needs answered.
He is your field which you sow with love and reap with thanksgiving.
And he is your board and your fireside.
For you come to him with your hunger, and you seek him for peace.
When your friend speaks his mind you fear not the “nay” in your own mind, nor do you withhold the “ay.”
And when he is silent your heart ceases not to listen to his heart;
For without words, in friendship, all thoughts, all desires, all expectations are born and shared, with joy that is unacclaimed.
When you part from your friend, you grieve not;
For that which you love most in him may be clearer in his absence, as the mountain to the climber is clearer from the plain.
And let there be no purpose in friendship save the deepening of the spirit.
For love that seeks aught but the disclosure of its own mystery us not love but a net cast forth: and only the unprofitable is caught.
And let your best be for your friend.
If he must know the ebb of your tide, let him know its flood also.
For what is your friend that you should seek him with hours to kill?
Seek him always with hours to live.
For it is his to fill your need but not your emptiness.
And in the sweetness of friendship let there be laughter, and sharing of pleasures.
For in the dew of little things the heart finds its morning and is refreshed.
I'm a caretaker for a kid with a bunch of disabilities all building off of each other. He was 14 when I met him, but in terms of mental development, he was around 1-2 years old. The other caretakers told me that he scratched, bit, and pulled hair. He always had and it wasn't going to change.
At one point, he was scratching me, and I asked "Are you trying to tell me you're frustrated?" He let go, looked at me shocked, and then began laughing with joy. I think I was the first person to ever take his outbursts as communication.
It's been just over a year since then, and most of the old caretakers have been replaced (they were all very burnt out) and under the new caretakers, he's slowly learning to speak and sign, he doesn't pull hair or bite anymore (he sometimes still scratches, but he understands now that it's wrong). He's smiling and laughing just about every day, and he's the most loving child I've ever met.
It's not like we did all that much. We just started treating him like a person. And that was all he needed.
Wonderful <3 I'm glad to hear treating this child as a person has transformed his life so much! Imagine living for 14 years being ignored or given negative feedback when you try to communicate. It must be amazing to watch him bloom.! :)
I haven't met anyone with a story as extreme as his, only read books and blogs by people who can't speak, but found ways to communicate. (I love The Reason I Jump by Naoki Higashida and How Do I Talk if My Lips Don't Move? by Tito Mukhopadyay, Emma's Hope Book by Emma Zurcher-Long and her parents (https://emmashopebook.com/), and some writing by non-speaking people on Kind Theory (https://kindtheory.org/fromtheauthors). These young people were thought not to understand much until they could share what they thought. It makes me wonder if sometimes, kids like the boy you care for are, or seem, delayed because they haven't gotten opportunities to learn, and they can't communicate what they *do* understand.
It sounds like he's already picking up speech and sign, which is fantastic! I'm curious if he's also tried any forms of alternative and augmentative communication (AAC)? (If that's something you're curious about, I can point you towards AAC experts).
He hasn't tried those just yet. One of my coworkers is trying to get recorder buttons delivered that could help him. (Like those videos you see of pets using buttons to talk.) We theorize that he can probably understand like 80% of what we're saying, so hopefully learning to use the buttons would be a helpful step! I would love to get a tablet he can practice on for more complex speech, too.
(We are in an area where deliveries are very difficult, which is why that process is taking a while. Haha)
I read your words, and they resonate with a timbre that's achingly familiar. I am 51, freshly familiar with the terms 'autism spectrum disorder' and 'ADHD' as they apply to me, not as distant concepts but as threads woven into my very being. I've walked a path where difference is met not with curiosity, but with aversion, and the echoes of misunderstanding have been louder than support.
Your post, it's a lifeline in a world where the cold expanse of the universe often seems mirrored by the hearts around us. You talk of treating people as people, of the irreplaceable fabric of their stories, and it strikes a chord. There's truth in your words, a truth that's been hidden from me by those who saw my differences as a problem to be solved, rather than a perspective to be understood.
We're often told that we're waiting for some grand design to reveal itself, to give purpose to the chaos. But I've come to see that purpose doesn't find us; we carve it out of the bedrock of our experiences. We are not irrelevant, nor are we waiting for a savior. We are the architects of our own destinies, crafting plans from the raw materials of our hopes and the lessons of our setbacks.
Loss has been a tutor of sorts for me, teaching that even when stripped of many things, our agency remains. The power of choice is the one thing that can never truly be taken from us. It is our most intrinsic freedom, the ability to decide how we respond to the symphony or cacophony of life.
And within that power, the intellectual and spiritual are not disparate but kindred in their quest for understanding. Both are journeys toward enlightenment, one through the rigors of logic, the other through the grace of transcendence. They are strands of the same rope, pulling us upwards to new vistas of comprehension.
Your message is a call to acknowledge our shared humanity, to look beyond the clinical and connect with the narrative, the spiritual essence of every person. It's a reminder that in the vast expanse of the universe, what warms the cold are the stories we share, the choices we make, and the plans we dare to lay down as our bridges across the stars.
Thank you for your words. They don't fall on deaf ears but on a mind that's been starved for such empathy and a soul that's yearned to be seen. Keep sharing this message; it's a salve to those of us who have felt invisible and a beacon for those who wish to understand.
Benjamin, thanks so much for your words. I'm glad my own comforted you. You're older than I am, and have yearned to be seen for even longer. You also seem to be further along on the journey, and finding spirituality and enlightenment I'm still hoping to find. :) And you write so poetically. (Do you write poetry?)
After a life of being misunderstood (confusing even myself), and a short period of loss, I'm finally finding my people and being seen. I'm also finding purpose again. It's hard to express the sheer joy, energy, drive to live I'm finding. I wish for you to experience something similar.
You talk about the importance of choices. I agree. I think that the need, and maybe the ability, to choose is part of being human. That's ironic, because I find it difficult and exhausting to make choices, and I often inconsistently follow my own freely chosen resolutions (thank you, ADHD). I often experience "choosing" as a long, complicated process with many tiny steps, like you see with Raskolnikov in Crime and Punishment. I want to learn the confidence and hope you've found in choosing how to respond to life's setbacks.
I find that contrary to popular belief, logic and emotion are compatible and can support each other (for example, emotion gives me the motivation to learn and think logically, while logic helps me apply my empathy in ways I don't regret). So many smart, logical people, great writers, philosophers, and scientists, have been spiritually minded, even religious....surely logic and spirituality are compatible, too.
Keep passing this message on, sharing your own story and listening to others'. I think a lot of people are afraid of the vulnerability that comes with exposing their souls, or recognizing others. Maybe we can make it safer.
Your words were wonderfully comforting, nurturing, and empathetic worthy of being immortalized in a poetic verse. I have written poetry in the past, not so much as of late and you can never tell when the Muse might descend! Lol! I am fond of Kahlil Gibran. I thought his poem "On Friendship" seemed an appropriate thank you for writing this piece. As you said so eloquently spoke to the necessity of sharing your message I will pay it forward! (You know I still have not watched that movie yet! It's on my list! LMAO)
On Friendship
And a youth said, Speak to us of Friendship.
And he answered, saying:
Your friend is your needs answered.
He is your field which you sow with love and reap with thanksgiving.
And he is your board and your fireside.
For you come to him with your hunger, and you seek him for peace.
When your friend speaks his mind you fear not the “nay” in your own mind, nor do you withhold the “ay.”
And when he is silent your heart ceases not to listen to his heart;
For without words, in friendship, all thoughts, all desires, all expectations are born and shared, with joy that is unacclaimed.
When you part from your friend, you grieve not;
For that which you love most in him may be clearer in his absence, as the mountain to the climber is clearer from the plain.
And let there be no purpose in friendship save the deepening of the spirit.
For love that seeks aught but the disclosure of its own mystery us not love but a net cast forth: and only the unprofitable is caught.
And let your best be for your friend.
If he must know the ebb of your tide, let him know its flood also.
For what is your friend that you should seek him with hours to kill?
Seek him always with hours to live.
For it is his to fill your need but not your emptiness.
And in the sweetness of friendship let there be laughter, and sharing of pleasures.
For in the dew of little things the heart finds its morning and is refreshed.
Your Friend in The Making,
Benjamin