Panicked Ramble

Posted on by Astrid

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

Leaving the Path Paved for Me

Posted on by Astrid

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regarding going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

Last Week at Current Day Activities

Posted on by Astrid

Today is a good day so far. I’m slightly less energetic and motivated than I was over the week-end, but I wouldn’t say I’m depressed either. It feels a little strange having started my last week at my curren day activities. Next week, I start at a new place, thankfully with the same care organization.

I started at my current day activities over a year ago fresh out of the mental institution. I didn’t know it back then, but the manager had gotten the impression that it was just an emergency placement, so I wouldn’t be there long-term. It’s a place for people with intellectual disabilities, which I don’t have. As such, I assume part of the reason I was eventually asked to find another place, is that they need my spot for someone who does have an intellectual disability. The staff don’t say so of course. They say it’s better for me to find another place. I hope that my new place will
prove to be better indeed.

The new place is also for people with intellectual disabilities. They are mostly severely intellectually disabled people at the gorup I will be attending, but they are at least partly capable of their own personal care. On the group I go to now, the clients are all profoundly intellectually disabled and need considerable help with their personal care. Two of my fellow clients need one-on-one support a lot of the time.

Why, you may ask, did I end up in this group? Well, I am not intellectually disabled, but the care approach to developmental disabilities suits me much better than the one for mental illness. I started day activities last year at a group for relatively capable people with mild intellectual disabilities. They do industrial activities there. This definitely wasn’t my type of activity. Also, the constant chatter that I couldn’t make sense of, was overloading me. So I often retreated into the sensory room. I prefer sensory activities to industrial-type work anyway. The center psychologist was consulted because my behavior was getting out of hand at the industrial group and she recommended I be transferred to the sensory group, which is the one I attend now.

There, I did well for about six months. Then, my behavior spiraled out of control again when several new clients joined my group and as a result there were lots of changes. After an incident in which I self-harmed, the manager decided I’d need to leave this place. Thankfully, he gave me time to find another place. The new place is with the same care organization but in a different town.

At the new place, the other clients are slightly more independent than at my current place. Also, the staff are more used to dealing with challenging behavior. It is pretty crowded and noisy, but when I’m overloaded, I’m allowed to retreat into the sensory room. I spent a few days at the new place to see if I’d like it and I did. As such, they’re more prepared than my old place. After all, the staff there only got a bit of information about me from my institution psychologist, most of which I reckon was incorrect. After all, said psychologist felt I’m dependent rather than autistic and as a result exaggerate my sensory issues in order to elicit care. Well, I’m not.