.Being.Us

Become more functional Depend on friends for more appropriate things Have a better quality of life Those are my 3 primary goals right now, and I think they might resonate with other disabled folks. This isn't going to be a blog that tells you easy steps to achieve these goals. I can't tell you how to do something that I haven't done myself. I'm just going to talk about my situation and the steps I plan to take to try to accomplish these 3 things. Hopefully, some of what I write will be applicable to your situation, too. This quest started with a tough conversation with my roommate. She said that I cannot live independently, and it's been falling to her and my friends to pick up the slack in my ability to care for myself. They've been helping with household tasks, staying with me when I'm not safe to myself, communicating at appointments, picking up financial slack, and more. These duties should fall to professionals who are paid to do them, but, although ...

Mental illness makes it hard for me to tell what's going on with my body. I seem to demonstrate a complete inability to conceptualize time, which may be more related to autism than mental illness, which makes recounting my symptoms to a doctor difficult. I also have trouble recalling feelings, physical or emotional, when I'm not feeling them right that moment. If I don't think to write them down when I experience them, I may not realize later that I have ever experienced them at all. Additionally, I have trouble grasping what has and has not happened. I may have a splitting headache on Wednesday, but by Friday, I'm second-guessing myself so much, I'm lucky to be sure that I had a head on Wednesday. I also used to deal with a tendency to find my identity in and obsess on new medical diagnoses, but this is a thought pattern that I am better , although not perfect, at keeping under control now. As a chronically ill person, it's important for me to be in t...

As a chronically ill person, I spend a lot of time at doctor's appointments, and, as a chronically ill, autistic, and mentally ill person, I find them overwhelming and draining. I want to talk about some of the things I do to make them easier for myself. Use mobility aids - If you use mobility aids, and your doctor is understanding about it, they can make the trip a lot easier. One mobility aid I use is forearm crutches.   Make visit notes ahead-of-time - I try to make my notes complete enough that I can hand them to the doctor if I'm having trouble with verbal communication. I take notes in my planner.   Present accommodation needs in writing- Carry a printed report of your accommodation needs to each appointment, and present one to each doctor's office to have on file. Discuss it with your doctor. Use an AAC program - Personal Favorites are Talk for Me for laptop and tablet and Speech Assistant for mobile. These are good if you prefer text-based AAC. I use Let Me ...

First of all, let me introduce you to Coco . She's my 1-and-a-half-year-old service dog in training, and she's the light of my life     Even at her current level of training, she's made a huge difference in my life. It's possible for me to go outside now, or even to run to the nearby store for 1-2 items. I know when my asthma is acting up in time to properly medicate and avoid hospitalizations. She stops me from hurting myself by actively interrupting those behaviors and providing alternative stimulation. She helps with so many little things every day. Still, she's not fully-trained. Her biggest barriers are jumping on people who enter our home, her prey drive on walks, and chewing. She's also having trouble mastering retrieval. To be fair, the jumping and chewing are completely resolved when she's getting enough exercise, but, running at my maximum possible level doesn't give her what she needs in that department. Recently, I resolved to become ...

This is a vent blog, but maybe it will give some insight into the types of changes that are hard as an autistic person: This week has been a barrage of change. I notice the tiny changes that I'm told allistics don't notice, and there were also a lot of bigger changes. First, I got a new student, which is a pretty common change; it happens about every 6 weeks. Then, I tried to do a lesson with an existing student, but our software wouldn’t work. Work told me the software had permanently discontinued service to our company, and I had to download and learn a new software, so I did. Several days later, though, they told me that the original software had been reinstated. This week, 4 lessons got rescheduled by students, my roommate was coming and going on a new schedule, and I was sleeping on a new bed. I started a new major project for work, and service techs came with noisy drills and disrupted my routines. I'm working way more hours than I can handle, and it's t...

Dear unnamed friend, I carefully hoarded enough spoons to do the activity you suggested at the time you suggested. I went to bed super early and planned NOTHING for tomorrow to be able to do it. I just got discharged from psych this week, and the meds still aren’t all the way in my system, so I’m foggy-minded and emotional. I also woke up every 90 minutes last night for 30-45 minutes due to nightmares about the hospital that joined my normal nightmares. I told you I’d let you know around 9am today, when my alarm was set to sound, whether I could come to the 1pm event today, and I texted you that yes, I could come, but I needed to sleep until 10 to regain spoons. You texted me 4-5 times between 9:15 and 10, effectively cancelling any change I had to sleep, since it takes me at least 2 hours to wake all the way up. You tried to change the plans to pick me up around 10:15am, and I understand why. You were already in the area for something and didn’t want to drive all the w...