As many of you know, I’ve been having a really difficult time finding a suitable support worker. Things were great until about a year ago. I had a fantastic support worker who, unfortunately, had to take a prolonged leave of absence due to health problems, and it’s been downhill since then. As I’ve mentioned before, I’ve been frustrated because it’s been hard to find someone who speaks good Swedish, is genuinely willing to work and not just take coffee breaks, has adequate social skills to answer more than just “yes” or “no” to my questions, and has the cognitive ability to be on time, understand and remember written instructions, and follow my care plan.
I Don’t Consider Myself Fussy
I really don’t think of myself as someone who complains about minor things. I’m not a perfectionist, and it’s perfectly fine with me if a support worker arrives five minutes early or late. But if they’re consistently at least half an hour late, it really stresses me out. I don’t mind if my support worker takes a five-minute break for coffee or tea – and that time shouldn’t be deducted from the support hours! I can also temporarily accept having a support worker who doesn’t meet all my criteria – someone who speaks poor Swedish or is very shy, for example – because the agency hasn’t had better options. But I don’t want that long-term.
I’ve Been Blaming Myself
After turning down so many of the agency’s employees, I’ve sometimes blamed myself and wondered if I’m being too demanding. I’ve generally been pretty sure I’m not, as I think it’s important to maintain confidentiality – especially now that many people know who I am. I also feel bad when support workers don’t show up without letting me know. But I still found myself wondering if I should be more flexible. I started to think there must be something wrong with me, because I almost never seem to be happy with anyone.
The Comments Didn’t Help
It didn’t get any better when I was told, “Paula, you have autism. And autistic people need time to adjust to new people. It’s perfectly natural that you were so attached to your old support worker because you had her for a long time. That’s why you feel uncomfortable with new support workers at first. But if you give them a chance, you’ll see they’re very good too!”
I Started Doubting Myself
I was pretty sure I always knew from the first meeting whether a new support worker would be a good fit or not. But those comments made me doubt whether that was really the case. It had been a few years since my previous support worker (the one who took a leave) was new to me. What if I had forgotten how I felt about her in the beginning? I was fairly certain I’d known immediately that my old support worker was the right person for me, but you know what I mean: when an autistic person is constantly told they might “feel wrong, think wrong, remember wrong” and so on, you start to wonder if other people might actually be right.
It Felt Right Immediately
Now, as I said, I’ve gotten a new support worker whom the agency hired specifically for me (because I’ve been so unhappy with many other suggestions). I call her Linda (not her real name). I’ve met her three times now, if I’m counting correctly, and it felt right immediately! The support workers I’ve thought were bad have always turned out to be bad. It felt so much better with Linda from the first meeting than it did with most of the others, even though I met those other people many times. It’s not about me being uncomfortable with people I don’t know, it’s about having the right support worker or not! If it feels like a good fit, the connection is immediate. I’ve now had that confirmed with Linda!
I Like Everything About Her
I like everything about Linda. Seriously, everything! She asked me if I get stressed when she asks questions. When we were clearing out my closet, she asked if I wanted her to make decisions about what to throw away, or if I wanted to decide myself, or if we should discuss it together. She wanted us to choose the option that felt best for me. I was completely taken aback, because it’s so rare for a support worker to ask how I want to be approached and what feels good to me. Those support workers do exist – my previous favourites did this – but they’re still pretty rare! Most of the time, the support worker just does the bare minimum and shows no interest in adapting to the client.
Her Swedish Isn’t Great
As I’ve written before, the only “problem” with Linda is that she doesn’t speak much Swedish (we speak Finnish to each other). She therefore can’t help me with everything – like phone calls. But she was upfront about that from the beginning, and we agreed that when I need help with phone calls, one of the agency’s full-time staff will cover for her. I’ve met the full-time staff before, and they’re lovely. So even though I’ve always wanted a support worker who speaks good Swedish, I’ve told the agency that it works fine with Linda and that I really want to keep her! She’s very good.
We Have Fun Together
Linda is doing everything she can to learn Swedish. She has a two-hour commute to my place, but that doesn’t bother her because she studies Swedish on the train! And when we do household chores, I also teach her a little Swedish, so she learns words, grammar, and pronunciation. She can’t pronounce many sounds, and therefore can’t pronounce common words like “card,” “energy,” and “station.” I also tried to teach her how to pronounce the long “a” in Swedish (as in the word “mat”). My previous support worker had put labels in my apartment, and when she looked in my closet she saw that it said “pillowcase” on one label and “underwear” on another. She asked me what “pillowcase” and “underwear” meant, and I translated those words into Finnish. So we also have fun while we work, which is a big plus (but not the most important thing for me).
Note to Self
This blog post will serve as a “note to self” to remind me that in the future, I don’t have to give new support workers more chances if I feel that the person isn’t providing me with good support. Not all autistic people are nervous around new people. The only thing that can take a little extra energy from me at the beginning is instructing a new support worker, but that’s really nothing compared to the energy it takes to have a support worker I’ve met many times but who isn’t a good fit. Linda is quick to learn and motivated! And I’m so glad I’ve gotten confirmation that my negative feelings about the other support workers were legitimate. I have autism, but that doesn’t mean I can’t judge from the beginning which support workers will work out. I know it very quickly!
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