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My life update and looking for friends to talk to

Chris1241

Chris1241

Active Member
V.I.P Member
I have chosen to live under a high level of care due to my medical and developmental needs. While this is deeply personal, I believe it’s important to be transparent.

I am a non-verbal adult with autism and epilepsy, and I experience bladder incontinence, which requires me to wear diapers full-time. Following the guidance of my healthcare team, I have transitioned to a fully dependent care model.

My caregiver is now responsible for all aspects of my daily care, including managing my diaper needs 24/7, assisting with feeding, and ensuring my safety through specialized equipment such as an adult-sized sleep-safe bed and a special needs stroller. I am no longer permitted to change or feed myself, as these tasks are now solely managed by my caregiver.

For both safety and sensory support, I wear anti-strip jumpsuits underneath custom childlike or toddler-style clothing that has been designed specifically for my needs. These clothes are not a choice made lightly—they are part of my medical and sensory care routine.

As someone who is non-verbal, I am not always able to express how I feel or advocate for myself. Still, I trust that the steps being taken are in the interest of my health, safety, and comfort.

I as so wear protective helmet for seizures all the time... I need to be able to talk with someone here because. I wish i could talk sometimes. I only type
 
Can you find anything to do that is creative, like drawing? Are you able to study a subject that really interests you? Welcome to the forums by the way. :)
 
Chris1241 said:
I have chosen to live under a high level of care due to my medical and developmental needs. While this is deeply personal, I believe it’s important to be transparent.

I am a non-verbal adult with autism and epilepsy, and I experience bladder incontinence, which requires me to wear diapers full-time. Following the guidance of my healthcare team, I have transitioned to a fully dependent care model.

My caregiver is now responsible for all aspects of my daily care, including managing my diaper needs 24/7, assisting with feeding, and ensuring my safety through specialized equipment such as an adult-sized sleep-safe bed and a special needs stroller. I am no longer permitted to change or feed myself, as these tasks are now solely managed by my caregiver.

For both safety and sensory support, I wear anti-strip jumpsuits underneath custom childlike or toddler-style clothing that has been designed specifically for my needs. These clothes are not a choice made lightly—they are part of my medical and sensory care routine.

As someone who is non-verbal, I am not always able to express how I feel or advocate for myself. Still, I trust that the steps being taken are in the interest of my health, safety, and comfort.

I as so wear protective helmet for seizures all the time... I need to be able to talk with someone here because. I wish i could talk sometimes. I only type
Click to expand...
Hello Chris, am not a regular poster here on this site. Am glad you found this place.
And my opinions are not always welcome,due to the degree of pragmatism,I experience.
And I can sympathize with the degree of frustration you might feel being dependent on a higher degree of personal care. If in fact it does feel that way to you ?. Are your care givers willing to be patient enough to read what you might type .? If so ,Perhaps let them know, that you may wish to advocate for yourself involving the degree of care you recieve in particular instances. If that is what you want ? changing diapers or whatever? You might have to prove thst you can do this on your own. Or go through the care-givers version of
Physical therapy. To prove it? Be careful how much independence you might wish to recieve . Best Wishes on whatever you choose.
 
JayCee said:
Hello Chris, am not a regular poster here on this site. Am glad you found this place.
And my opinions are not always welcome,due to the degree of pragmatism,I experience.
And I can sympathize with the degree of frustration you might feel being dependent on a higher degree of personal care. If in fact it does feel that way to you ?. Are your care givers willing to be patient enough to read what you might type .? If so ,Perhaps let them know, that you may wish to advocate for yourself involving the degree of care you recieve in particular instances. If that is what you want ? changing diapers or whatever? You might have to prove thst you can do this on your own. Or go through the care-givers version of
Physical therapy. To prove it? Be careful how much independence you might wish to recieve . Best Wishes on whatever you choose.
Click to expand...
JayCee, you've asked questions that I, too, was wondering about. Thank for your post that could be used in inner guidance for Chris1241. Please consider being a more "regular poster." I think you have positive, pragmatic thoughts, ideas, and concepts that would be beneficial to others.
 
Chris1241 said:
I have chosen to live under a high level of care due to my medical and developmental needs. While this is deeply personal, I believe it’s important to be transparent.

I am a non-verbal adult with autism and epilepsy, and I experience bladder incontinence, which requires me to wear diapers full-time. Following the guidance of my healthcare team, I have transitioned to a fully dependent care model.

My caregiver is now responsible for all aspects of my daily care, including managing my diaper needs 24/7, assisting with feeding, and ensuring my safety through specialized equipment such as an adult-sized sleep-safe bed and a special needs stroller. I am no longer permitted to change or feed myself, as these tasks are now solely managed by my caregiver.

For both safety and sensory support, I wear anti-strip jumpsuits underneath custom childlike or toddler-style clothing that has been designed specifically for my needs. These clothes are not a choice made lightly—they are part of my medical and sensory care routine.

As someone who is non-verbal, I am not always able to express how I feel or advocate for myself. Still, I trust that the steps being taken are in the interest of my health, safety, and comfort.

I as so wear protective helmet for seizures all the time... I need to be able to talk with someone here because. I wish i could talk sometimes. I only type
Click to expand...

Hello. I do not speak. I use iPads and a laptop to talk to people.

I want to know if you typed your message and if the people who provide you care read your messages. I had a problem years ago when I thought I was having a private conversation with someone and I found out his helper was typing and reading everything we said. I did not want that.
 
grommet said:
Hello. I do not speak. I use iPads and a laptop to talk to people.

I want to know if you typed your message and if the people who provide you care read your messages. I had a problem years ago when I thought I was having a private conversation with someone and I found out his helper was typing and reading everything we said. I did not want that.
Click to expand...


I know not everyone reads what I post or fully understands my situation, but I wanted to explain why some decisions have been made about my care—both on this site and in my daily life.


I have epilepsy, and when I have seizures, my body gets super weak after. Sometimes I can’t even feed myself or change my clothes or diaper. When that happens, I sit in a special floor chair that helps hold me upright so I don’t fall over or get hurt. It’s kind of like a support seat for when I don’t have the strength to sit on my own.


I also wear something called anti-strip clothing. It’s not regular clothes—it’s made so I can’t pull it off easily. That might sound weird, but it’s because I have sensory processing issues. Certain fabrics or the way clothes feel on my skin can get really overwhelming. When that happens, I just want everything off, and that can be unsafe. So these outfits help keep me calm and protected.


My brain works a little different too. It’s kind of like I think and feel more like a younger kid—somewhere around age 3 to 6. That means I need help with a lot of things. My dad and my live-in caregiver do most of it—getting me dressed, helping me eat, making sure I’m safe. They pick out clothes that are more like kid or teen styles because they help with my sensory issues and keep me comfortable. I also use a pacifier sometimes when I’m having a rough time or not feeling well—it helps calm me down.


My room is set up in a way that works for me. The colors are soft—light blue and red—and it feels really comforting. I spend time coloring, playing with plushies, and watching sensory lights. These things help me feel more relaxed and safe. One of my favorite things is going to the beach. My caregivers take me and let me sit right at the shoreline, where the water touches the sand. It’s super calming and makes me feel at peace.


Even though I understand I need this kind of care, it’s not always easy. Sometimes it feels overwhelming. I get sad or confused when people don’t understand why I live the way I do. Being seen like this—so dependent and different—can be scary, and honestly, sometimes it makes me feel really small.

I know some of you my not understand me but if you do please talk with me i needs all types of friends.

My dad knows I’m here and supports me being part of a safe space. He even pays for VIP so I can make friends and connect with others.
 
Last edited:
Chris1241 said:
I know not everyone reads what I post or fully understands my situation, but I wanted to explain why some decisions have been made about my care—both on this site and in my daily life.


I have epilepsy, and when I have seizures, my body gets super weak after. Sometimes I can’t even feed myself or change my clothes or diaper. When that happens, I sit in a special floor chair that helps hold me upright so I don’t fall over or get hurt. It’s kind of like a support seat for when I don’t have the strength to sit on my own.


I also wear something called anti-strip clothing. It’s not regular clothes—it’s made so I can’t pull it off easily. That might sound weird, but it’s because I have sensory processing issues. Certain fabrics or the way clothes feel on my skin can get really overwhelming. When that happens, I just want everything off, and that can be unsafe. So these outfits help keep me calm and protected.


My brain works a little different too. It’s kind of like I think and feel more like a younger kid—somewhere around age 3 to 6. That means I need help with a lot of things. My dad and my live-in caregiver do most of it—getting me dressed, helping me eat, making sure I’m safe. They pick out clothes that are more like kid or teen styles because they help with my sensory issues and keep me comfortable. I also use a pacifier sometimes when I’m having a rough time or not feeling well—it helps calm me down.


My room is set up in a way that works for me. The colors are soft—light blue and red—and it feels really comforting. I spend time coloring, playing with plushies, and watching sensory lights. These things help me feel more relaxed and safe. One of my favorite things is going to the beach. My caregivers take me and let me sit right at the shoreline, where the water touches the sand. It’s super calming and makes me feel at peace.


Even though I understand I need this kind of care, it’s not always easy. Sometimes it feels overwhelming. I get sad or confused when people don’t understand why I live the way I do. Being seen like this—so dependent and different—can be scary, and honestly, sometimes it makes me feel really small.

I know some of you my not understand me but if you do please talk with me i needs all types of friends.

My dad knows I’m here and supports me being part of a safe space. He even pays for VIP so I can make friends and connect with others.
Click to expand...
Dear Chris 1241,

I have read EVERY word. that is written here in your explanations about yourself.

May I become a friend of yours? I'd like this very much. If so, you and I can share more things about one another. I'm thankful that you have a loving, caring father and another care giver. I'm also thankful that your physical needs have been anticipated and met fairly well.

I have read that there is a direct correlation between epilepsy and spirituality. I have not had symptoms of epilepsy but have had deeply spiritual experiences (and I do not mean religious experiences although I have had those as well). I just wonder if you ever have had experiences that seem spiritual to you.

Maybe we can visit more if you would like this.

Sincerely,

John
 
Yes you can be my friend

My daddy can be really cool and silly sometimes. But I feel like people judge me just for being me. I can’t help it. Sometimes I feel really weird or uncomfortable, and I don’t know how to explain it. My brain doesn’t work like a big kid’s or like a daddy or mommy’s does. It’s more like a baby’s brain, even though I’m super tall—like 5'10"! So people get confused when they see me.


I can walk, but I have to wear a harness so I don’t wander off. If no one watches me and I walk off, I get in trouble. People scare me when they talk to me, especially if I don’t know what they’re asking. I get scared and try to run away. Then someone catches me, and I start crying. That’s when they figure out I need help. They know something's wrong, so they try to figure out who I am.


That’s why my daddy puts special clothes on me. There's a little pocket on them with papers inside that say who I am and who to call if someone finds me. I can’t get to the papers myself, but they’re there to keep me safe.
 
Chris1241 said:
Yes you can be my friend

My daddy can be really cool and silly sometimes. But I feel like people judge me just for being me. I can’t help it. Sometimes I feel really weird or uncomfortable, and I don’t know how to explain it. My brain doesn’t work like a big kid’s or like a daddy or mommy’s does. It’s more like a baby’s brain, even though I’m super tall—like 5'10"! So people get confused when they see me.


I can walk, but I have to wear a harness so I don’t wander off. If no one watches me and I walk off, I get in trouble. People scare me when they talk to me, especially if I don’t know what they’re asking. I get scared and try to run away. Then someone catches me, and I start crying. That’s when they figure out I need help. They know something's wrong, so they try to figure out who I am.


That’s why my daddy puts special clothes on me. There's a little pocket on them with papers inside that say who I am and who to call if someone finds me. I can’t get to the papers myself, but they’re there to keep me safe.
Click to expand...
I'm glad that you give me permission to be friends with you. I hope that we can be friends together for a long, long time even though I'm now 80 years old. I'm happy to know that your daddy is cool and has a sense of humor. And I'm glad that you recognize this about him. I'm glad that you have each other in a loving relationship. Both of you are SPECIAL ! ! ! !

I've been judged too, Chris 1241. (May I call you Chris without the numbers?) People, in general, don't stop to find out who we really are inside and this is the part of each one of us that makes each one of us special. I'm glad that you are telling me about the specialness about yourself, who you REALLY are inside! Over time, I hope that we can learn more and more about how we are inside and what we think, feel, and how we act in our own, special ways.

I have had a pretty difficult life but the difficulties are what make me who I am. My dad wasn't like yours. He was mean, an alcoholic, had mental problems, was a domestic violence perpetrator, and would beat me, tell me that I was no good and worthless, and tell me that I'd never amount to anything. My mother wouldn't protect me from any of this and she was misguided, telling me that I had to respect my daddy.

But I've learned that all of the abuses and misunderstandings have made me into a caring, loving, understanding, and supportive human being who loves easily because I remember what it's like to be treated without love. We all need love.

I live in Quito, Ecuador, in South America now but I was born in the U. S. state of Oklahoma in a small town near Tulsa, about 30 minutes drive south going towards Dallas, Texas. I had a favorite uncle, my daddy's youngest brother, who rescued me from the abuses and took me in to live with his wife, with his two little kids, and with him. So even with parents who didn't treat me very well, I still had people around me who cared for me and loved me like your daddy loves you.

I can no longer stand and walk very long before I have a lot of pain in my lower back, so I'm homebound pretty much all the time. This is why having you as a friend is one of the reasons that you are important to me. Without people like you, I couldn't be connected to others and being with others through the internet is what makes my life have meaning and purpose.

Please, next time, tell me about your family. Do you have brothers and sisters? Your mother? Do you have grandparents who are still alive? What about aunts, uncles, and cousins? Next time, I'll let you know about my cousins, and a younger sister, okay?

In the meantime, you be good! I promise that I'll be good too!

Sincerely,

John

P. S. I think you are PRECIOUS!
 
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