The Bump

Fun Friday post.

That is my left hand. That odd looking thing up there next to my pinky finger is what remains of a sixth finger or, as I affectionately refer to it, the bump.

When I was born, doctors thought it was out of the norm but 26 years later, I would learn it is one of the major signifiers of Joubert syndrome.

The finger was amputated when I was just a baby, and I've had the bump ever since. It's mostly just tissue in there, so it never gets in the way.

It's a pretty good conversation starter, too! People always ask about it, and I'm pretty quick to bring it up. Fun story: When I was in grade Primary, so about five years old, another boy in my class was missing several fingers. I guess I had told him I was born with extra and the doctors could give him mine.

The bump isn't without controversy, though. It is always a cause for debate between me and my mother. She always thinks it's growing (it's not!) and wants me to see about getting it removed. I have an appointment with my family doctor coming up, and I've agreed to at least ask about the possibility of maybe having it looked at. But I've played around with it, moving it backwards to see what my hand could look like without it, and it just looks so...normal. *shudders*

Cheers

Work stuff - Being realistic

Earlier today, I met with a case worker, who works for an employment agency, for a follow-up about the placement and to discuss changes in what I'm looking for, employment-wise.

Rather than sticking to writing, advocacy, and other paths which, even though I'm good at them, aren't exactly leading me to any kind of employment, I flat-out decided I just want a part-time job. Something a couple days a week that will supplement the disability pension I'm getting, get me work experience, and allow me to get out of the house and maintain a routine.

With my experience, the case worker suggested something in admin or data entry. She recommended taking an online typing test to check my speed, and said she had a few admin positions within the agency's networks, so that's okay for now. However, I've been with this agency for about a year and a half now, and the biggest opportunity to come from them so far has been the placement which was great, but never actually lead to real employment. With this in mind, I've decided to give the folks helping me now until Christmas to come up with something, even if it's just an interview. If nothing happens, I'm thinking about speaking with someone from the employment centre I did my placement with. They know me, a few of them already have my resume and know what I'm looking for, and I know them and the centre's success rate, so why not?

Another option I'm finally starting to consider for more reasons than just employment, is outright moving to a smaller city. My parents have been thinking about it for some time now, and moving to somewhere smaller just might mean less competition for a job.

Whatever works, I guess.

Anyway, enough of these work and adult-ish things, I've got a night of comics and Chinese food ahead of me!

Cheers

Frustration (and Coping with It)

A lot of people think that nothing tends to bother me. That's not entirely true. Yes I can be pretty chill, but things do still frustrate me. And when this happens, I can sometimes fly off the handle. I've been told that I yell at myself, "zone out" (like, losing focus), and occasionally even hit myself.

I know to distance myself whenever this happens, and my family is good at cluing me back in, but it is scary to think that someday, this could happen when I'm out in public. That's why I've started looking into ways of dealing with this.

Frustration, I've learnt, is common in people with Joubert syndrome so a parents group was the first place I looked for advice. Suggestions ranged from behavioural therapy and talking to a specialist to writing and finding something to occupy my time. I don't think I'm at the point where I need to seek professional help, though it is good to know for if/when things get to that point.

Finding something to occupy my time seems to make the most sense, as the placement I did has been over for a month and I'm currently looking for new work (or even volunteering) opportunities. Actually, I think work, and seeking independence in general, plays a huge part in my current frustrations.

But, I'm dealing with it, talking about it and, as one of the parents in the Joubert group mentioned, that could help parents understand what frustrates their children, and figure out ways to help them.

And just doing that makes me a lot happier.

Cheers!