Weekly Check In Aug 9 - 14
[A man flexes his bicep while in a hand bike at a competition]
Independence
Sometimes being disabled interferes with developing it, or it can chip away at what independence has been achieved. It can take a fair bit of effort to get some of it.
What's an area that you have developed independence? What helped you get it?
Is there something you wish you had more independence with?
What would you like support with?
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@AffyAvo
What's an area that you have developed independence? What helped you get it?
Living with my memory issues. It took a good while to find someone who could show me ways to manage with it alone. But those ways turned out to help gain my independence, and technology made them easier in a way.
Is there something you wish you had more independence with?
Living with constant routines and all, I often wish I didn't have to. But I've come to terms some things never change. It's easier to move forward that way.
@OneErased
I'm glad that you've found ways to deal with your memory issues! However, I totally get that it can be frustrating having to stick to routines constantly. It's great to hear that you can find some acceptance regarding it though.
@AffyAvo
What's an area that you have developed independence? What helped you get it?
With my mild cerebral palsy, I can be independent in clothing myself, brushing my hair, yeah and a lot of things, thanks to my mom.
Is there something you wish you had more independence with?
I wish I had independence in washing myself, and do stuff like other kids can like actually catch a ball with two hands. I wish I can talk normal but my voice is quiet of the paralyzed left vocal cord i have and i hate it when people say 'speak up' or 'talk louder' because it just makes me sad when they do that...
What would you like support with?
@AliWriter
I can understand when comments of other people about your talking make you sad because you can't change it. However, it's amazing to hear that you have achieved being able to do many things like clothing yourself and brushing your hair independently!
@AffyAvo
What's an area that you have developed independence? What helped you get it?
I'm getting more and more independence in my thinking, free from prejudices, unhelpful thoughts that come from mental disorders, and thought patterns that I brought with me from growing up. What helped me with that was making my own experiences, learning about myself, and opening up about my thoughts.
Is there something you wish you had more independence with?
I wish I had more independence regarding my mobility and the freedom to do things spontaneously.
What would you like support with?
I hope to get personal assistance soon that can help me with achieving the independence in the areas mentioned above.
@audienta Independence from thought processes - that's not something that would come to mind for me for independence but how you explained that makes so much sense!
From what you have posted about gaining more mobility it sounds like you're doing that right things! Good luck with accessing a personal assistant!
I have independent in writing now !! If I use phone and have autocorrect I do really good typing things my own now I still have to ask how to spell things or word for signs sometimes but I do really good now so good I can use chat rooms ! 😃
but I wish I have more independence all things to take care of me. I need help with everything like brushing teeth and making food and using bathroom and washing hair. I get hurt a lot because I forget things are not safe someone always stay near me and makes really frustrating sometimes because I want to just do thing all myself but hands and brain don’t understand how yet when I try and some things is worst like brush teeth because hurts and feels bad so I always get upset they brush my teeth makes harder to even try do own
but I don’t know I want support with right now!!!!
@theboymoana That's awesome you can write independently and use the chatrooms! Writing can allow us to go so many places at least via imagination.
It must be frustrating at times to not have much independence with daily routines. I hope technology will lead to more solutions in the future.
@AffyAvo
yes ! Teachers tell my parents over over over that I can’t learn and never read write and they are wrong because my parents take me out of school when I am 9 and teach me read and write. I can’t write on paper with hand is to hard for me but can type on phone and iPad and like to read books even if is not teenager books yet
is frustrating sometimes but my family never make feel bad about needing help so makes not so bad and developmental disability program have people help me so now I can do things fun without family to sometimes ! I just wish other people is not so mean about people need help with things
What’s an area that you have developed independence?
Thinking positive thoughts when I’m experiencing extreme pain from inflammation of the skin due to my chronic skin disease.
Is there something you wish you had more independence with?
I wish I could still be able to parent effectively and complete daily routines/activities while being inflamed, but on those days because of the extreme amount of pain it hard to even get out of bed.
What would you like support with?
I guess I would like support with developing a social life outside of my family. Due to my chronic skin disease, I’m not able to get out much which makes it a lot harder to socialize and make friends.
@lovelycoacoa, positive thoughts are a great way to cope with a situation full of pain. It can be hard to deal with the pain, but over time positive thoughts can make it seem not as bad, in my opinion.
I do not have experience as a parent but based on how my parents parent I can only imagine how hard of a job being a parent is without anything on top. Extreme pain would make that job even harder. I struggle to get out of bed with my disabilities some days so I can only imagine the struggle it is when one has kids.
We will support you as best as we can!
@AffyAvo
What's an area that you have developed independence? What helped you get it?
That's a really difficult question for me, as I feel like I struggle having any of the independence I wish I had.
I have to recognise though that as a neurodivergent my struggles socially used to be so huge that I never was starting anything, trying anything, unless I was accompanied and would have someone I knew staying with me. This is something that I need to celebrate is one thing of the past!
What helped me? Reframing my thoughts mostly. Telling myself that people didn't get up in the morning just to focus on me and trying to find ways to make me miserable. Growing confidence by learning to look at myself and focus on what I like. It also has been friends who showed me how much they cared for me which gave me more confidence.
I also have regained independence to wash myself, and this is a great satisfaction just to be able to take a shower on my own everyday. What helped me has been to get on a ketogenic diet. My whole health improved afterwards and I was able to push myself forward to regain more mobility.
Is there something you wish you had more independence with?
Walking. As a parent of an hyperactive child, I really suffer from not being physically capable of keeping up with her.
Money/work. I really wish I had less pain and more energy and could work full-time/pursue the career I wanted.
What would you like support with?
I would like to receive support with chores at home because I hate it that I cannot keep my environment clean and tidy like I would like.
@AffyAvo
What's an area that you have developed independence? What helped you get it?
With asking for help. Advocating is one of the best things I've ever done for myself. My parents were my advocates and then taught me how to be one and that really helped.
Is there something you wish you had more independence with?
Driving to my appointments lol. My disability keeps me from going to my appointments sometimes because I can't drive
What would you like support with?
What's an area where you have developed independence? I had a little more independence when I was in regular-sized classes. What helped you get it? I had to work harder than my other peers because of my learning disability and vision impairment. However, if were to look at me you wouldn’t see anything wrong with me. My vision impairment is more noticeable when I read. My vision impairment is so easy for me to talk about but my learning disability has taken me a while to talk about.
Is there something you wish you had more independence with? No, I don’t think there is anything that I wish I had more independence with according to my disability.
What would you like support with? You can do anything that you set your mind to. You might have to work harder than others so what. Don’t let people tell you what you can’t do. Feel free to ask me any questions you have.