One day I would love to live on my own with some support. Now that my regulation has improved so much, I think my biggest problem is management of my medical status. I take a lot of medicine for my epilepsy and have no independence in that area. I need help with so much medically that I am confident full independence is not possible and that is okay with me.
I do think there are some things I can do to gain more autonomy. Being more involved with organization and learning to initiate when it is time to take my medicine would be nice. I am in a good place with understanding, appreciating, and accepting my disabilities. I am mostly focused on what I can do, while also accepting the accommodations I will always need.


Thank you for your insights. You have a great way of explaining what is important to you, how to negotiate health and safety issues, and how to reach reasonable goals. Your life experience can help so many others!
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You’ve reminded me of something I was dealing with a few years ago, when I was being pressured to function at a neurotypical level constantly, even though my brain was telling me in no uncertain terms that I needed to give it a break and accept my limitations: The difference between empowerment and independence. IMO, (western) society focuses way too much on it’s definition of “independence” and in so doing, disempowers so many people, especially those of us in the disability community.
(I tried to write more about this, but kept deleting it ’cause I couldn’t manage to say waht I wanted without ranting, so I’ll just leave it at this.)
Needless to say, I’m all for empowerment! Especially when it means we can overcome our internalized ableism (and for that matter external ableism too), and accept ourselves for who we are, support needs included!
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I love hearing from non-spellers! My son has been spelling for about 3 years now (32 years old) and it just amazes me the depth of his knowledge and insight. I’m going to see if he will write about his experiences living with a paid support who is also his best friend. She’s like a sister to him and her whole extended family treats Rob like family as well!
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