.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 ...

Over the last 2 years, you've demonstrated an inability to live independently when exerting your best effort. The burden is falling to your friends to fill in the gaps. We think you should consider a group home. That's what my care team told me recently, and it came as a blow. My roommate was the first to bring it up, as one of those friends who was feeling the weight of filling in the gaps in my ability to care for myself and my dog. My roommate is in her master's program for social work and works with people with autism for a living. When I brought her concerns to my counselor, my counselor agreed with her assessment- I need more supports. So now, my case manager and counselor are searching for good group homes that will take my ESA (emotional support animal) and I by June at the latest, since my lease is up in July. Meanwhile, my doctor has put in an order for nursing and aide care, but we don't know how long that will take to come through. I also set up a meeting...

I spent a few days this week in an inpatient psychiatric treatment program, and I have a few major takeaways. 1. I need a set schedule. Having a set schedule while inpatient helped me a lot. I don't need every hour scheduled; that would be stressful and overwhelming. I need landmarks in my day to keep me on track. Here's the schedule my autism coach and I created: 8:00am      Wake up 8:20am        Coco out 8:30am        Morning medication 10:00am      Coco out 1:00pm       Coco out 3:30- 4:00    Cleaning 4:00pm        Coco out 5:30pm        Evening medication 7:00pm        Coco out 2. I would gain more independence by getting my pills in the pouches where each time's dosages are pre-packed. ExactCare Pharmacy is one way to...

I've been to the psychiatric emergency room twice in the last year, and both times, while needed, were absolutely traumatizing. Here's how a psych hold went in my city with no insurance: The First Visit I arrived at the traditional emergency room, and my advocate was allowed to stay with me and help me communicate. They took ALL my possessions, even the harmless ones I use to cope, and I panicked and cried when that happened. I snuck some coping items in with me, and they snuck them back when I went to the bathroom, but they avoided confrontation. My advocate had to leave after about half-an-hour, and the hospital staff expected me to be able to get them if I needed anything, like food or the bathroom, but I couldn't. I barely ate during the 30-hours I was in hospitals because I was too out-of-touch to execute the steps of asking a nurse for food unless she appeared and asked me if I was hungry. During the hold at the main hospital, they just watched me. They didn...