Transitioning Tuesday

Starting a new thing here on the blog. You've heard of Throwback Thursdays, and maybe Feel-good Fridays? Well, get ready for Transitioning Tuesdays.

I've posted about the "Transitioning to Adulthood with a Disability" articles I've written (linked here) and how I recently had to stop due to other things going on in my life. Now, I've decided to continue on with some of the ideas I never got to use, and post them on here. I'm choosing the first Tuesday of every month (starting next month) because 1) it keeps me to a schedule, and 2) Transitioning Tuesday was the closest I could come to thinking of a catchy title.

Stay tuned...

Getting this whole thing figured out.

And by "thing" I mean the advocacy stuff.

The blog's going great, though I think I'm going to start posting on here more often. And, I may have some speaking-type opportunities lined up for this summer (not really set in stone yet, more on this in the new year).

What I'm trying to figure out is how to take it further; be more pro-active. Well, I've been mulling it all over for the last couple days, and I think I've got a plan figured out.

First thing, plan more speaking. It was suggested to me that it might be easier to make motivational speaking the priority in regards to advocacy, with the writing coming as a natural second. Seems like a good idea.

Second, do some research. Over the last week, I've been going through things like my résumé, past speeches, and even old Facebook posts to look back on what I did previously, and look for any past contacts who may be able to offer some help.

Third, and probably the most important, look for another job. The service provider I'm with has proven very useful and proactive at helping me look for work. Right now, I'm waiting to hear back from a few places, one of which looks very promising.

All this, plus one or two other ideas I'm kicking around should prove to be effective, or at the very least, keep me busy.

Cheers until next time.

And Here We Go Again...

Warning: This post may become rant-like.

This week marked that truly awesome biannual event I like to call My Housing and Home Support Headache. Five years ago, I filled out some forms to get put on a wait list for accessible housing in Ottawa. Twice a year, I phone in and check on my status, and two things always happen:

1. My status never really changes
2. I get angry

A fairly accurate depiction of me during these times.

It's usually around this time that I also look into home support and attendant care. Around the same time I received forms for housing, I also got a package with information about disability support services in and around the city from a rehab centre I occasionally got to. I've contacted several organizations and providers over the past several years, and it's always the same thing:

1. The lead doesn't pan out
2. I get angry (Noticing a theme here yet?)

I've been denied various services for various reasons: I'm not disabled enough, I'm too disabled, I'm too young, I'm too old etc. There's usually always a runaround, too. I'll phone service A, who will tell me to phone service B. Then service B will send me back to service A, and so on. At this point, I'm seriously half-expecting to be told to do the Hokey-Pokey and turn myself around.

A few days ago, I asked about getting some updated supports info (the original package is from '08), and got the runaround again. This time, the department I got the original information from said I would have to get a referral from one on my doctors at the rehab centre first. So, I was transferred to what I thought was the doctor's clinic, only it was the centre's main desk. From there, I was connected to the right clinic, but was told I would actually need to see the doctor herself to get a referral. Finally, I was transferred to my doctor's secretary who told me she'd look into getting me a referral.

 So now I wait. And while I'm waiting, I'm starting to think it might be time to look at some other options. Maybe it's time to go a few steps above the service providers and talk to my alderman about what I can do, or maybe Ottawa's just too big and I need to look into a smaller city. Decisions, decisions.

Anyway, I've done pretty much all I can do for right now. Just hoping for the best.

I'm not just a blog, now I'm a Facebook page too. *Super-quick post*

Yep, that's right. The Rare Writer can now be found on Facebook.

The Rare Writer on Facebook

Make sure to Like it, and many thanks in advance.

Odds, Ends, and Updates

In kind of a writing mood, so I thought I'd do a quick-ish post just about what's been going on over the last couple months.

Work:

I stopped working with the call centre in May. Nothing wrong, just didn't make the cut after a probationary period. Soon after, I linked in with a temp agency that specialises in helping people with disabilities get work. They're pretty good, and I had an interview for some office admin/communications work just last week. I've had many interviews for work, but this was the first time I got there and back completely on my own.

Advocacy:

A while ago, I was fortunate enough to learn about a disability advocacy group here in Ottawa. I got in touch with them, and was told they meet up in the Fall and that I'd be contacted then. So, that good news.

I'm also thinking of making a Facebook page for the blog, and other advocacy-related things. If it happens, look for news here.

Writing:

I decided I had to stop writing for Support for Special Needs. Just one thing too many on my plate right now. I'm planning on using some of my leftover ideas for transitioning articles for future blog posts.

I'm really into comic books, and I recently read a story from DC Comics called Kinetic. It's about a sickly, disabled teenage boy who gets superpowers. It's really good and I highly recommend it, but it's also pretty dark.

Now, I've been trying for several years to come up with good ideas for my own comic. I've got a few, but Kinetic's kind of inspired me to try and incorporate disabilities into the mix. Hopefully it works.

Other stuff:

Went on my own to Toronto this past May for the Toronto Comics Art Fest. It was my second year, and was so much better than the first. Great weather, my own hotel room and, best of all, a whole weekend on my own.

After twenty-plus years living in and around Ottawa, I finally went to Bluesfest this year. Saw Sam Roberts, Moist, and Collective Soul, one of my all-time favourite groups! Such a great night, and I was so relieved that the rain and humidity let up just in time.

Me, after the concert.





Well, that wraps it up for now. Cheers.

The Happiest Place on Earth (That Isn't Home to a Cartoon Mouse)

I've been reading a lot online lately about kids with disabilities going to/coming back from summer camp, or parents looking for a camp or program for their kids. I got inspired and decided to share my camp story.

Eighteen years ago (yep, I'm feelin' old now...) in the summer of 1996, I went to Easter Seals Camp Merrywood for the first time. Located on the Rideau River near Port Elmsley Ontario, Merrywood (MWC for short) is a summer camp for disabled children. A therapist had recommended it to my parents, so they signed me up for a one-week session.

 I was eleven, and it was my first time away from home for more than a night, and I think my parents were more scared than I was. I was in a cabin with other boys, some of whom were my age. Everything was adapted to accommodate various disabilities. I tried tons of different activities, including sailing and archery for the first time (both of which I loved).

My first year, drawing something. Probably some kind of monster or dinosaur.

It was fun, but I got a little sick on the last day.

The next summer, I went for another one-week session. Again, lots of fun.

 Summer 1999, I attended a teen session for some of the older kids. Same activities, only more independence. I socialized more with some of the counsellors more since many of my cabin-mates were more on the lower-functioning side.

Cabin pic

Summer 2000 was without a doubt my favourite year at Merrywood. That summer I had signed up for a two-week Teen Independence Camp session. Five guys and five girls between fifteen and eighteen years old learning a variety of things like cooking, budgeting, and other independent-living skills, while still enjoying camp. I learned a lot, and camp stuff was still fun, but what I enjoyed the most was just hanging out with other young adults from the group I was in as well as one or two others who were mostly older and higher-functioning. Two of the guys in my cabin even ended up being my roommates in college, and I still keep in touch with most of the people from that summer.

Group pic

Cabin pic

  While it wasn't "camp", I attended a weekend youth conference for Easter Seals at Merrywood the next Fall. Some of the same stuff as the Teen Independence session (independence, older kids), only more casual.

2002 was my last year of camp. I could've gone one more time the following summer, but I was getting ready for college. This year was a little different. First off, since I was older and/or higher-functioning than most of the other boys in my cabin, I was allowed to go to certain activities on my own and was even asked to help out a few times. Second, I tried a couple new things.

During the session, I went white-water rafting for the first time. It was pretty scary until we actually got in the raft. The best thing happened when I got off the boat. I was walking up a hill to get back to the rafting centre's main building when I saw my parents and sister walking towards me! At first, I didn't think it was them, but they came down to me and told me they were going on a trip similar to the one I had just been on. Only, it turned out that I went though ALL the rapids.

 

About a day or two after that, I was off again. This time, on a three-day out trip to a nearby campground.

It was sad to leave camp, but I was getting older and I was starting to find the activities childish.

Leaving my mark on the Arts cabin

This wasn't the end of my Merrywood experience, though. A few years ago, I had the pleasure of speaking to the older campers about transitioning to adulthood with a disability. Last year, I attended Merrywood's open house. The camp had gone through some renovations, so it was a weird feeling walking around the grounds, seeing the mix of new and old.

Eleven years later

Camp Merrywood was a great experience, and is one of the sole reasons I continue to, and will always, support Easter Seals. In my time at camp, I tried a lot of new things and made a lot of friends, but best of all, I was (mostly) independent. I hope that many disabled children and young adults get to have the same experience, wherever they are.

Joubert conference '13: Advocacy, new friends, and good burgers

So, I'm finally doing it. After 2 months and 5 posts of hinting at it, I'm finally going to write about the Joubert conference in Minneapolis.

It was from July 10 to 13, 2013. We (my Dad and I) left from Ottawa the morning of the 9th. Just getting to Minneapolis was kind of an adventure. We had to stop in Toronto first, for a four-hour layover. That, coupled with technical glitches due to some flooding, made things pretty interesting. Then we arrived in Minneapolis. The airport was really cool. We had to board a monorail to get from the gait to Baggage.

We got to our hotel the evening of the 9th, and started to meet people almost immediately. I'll be honest, I was a little nervous for the first day and a bit. For a "kid", I was clearly the oldest. As a presenter, the youngest. Thankfully, my nervousness started to subside as the conference got going the next day.

The first thing we went to was a small break-out session where families of adults with Joubert syndrome had the opportunity to  meet with some of the doctors and specialists attending the conference. There were four other adults in the session, along with a woman attending on behalf of her two daughters. The very first thing I noticed was how different each of us was. When the doctors started asking us questions, I found I had nothing to say. Later though, I mentioned about transitioning, writing, and speaking, and everyone was very interested. In fact, one or two people suggested that I could make a career out of it. (This would continue throughout the week)

The next morning, my Dad and I went to breakfast. Halfway through, we were joined by a young woman and her mother, both of whom were at the adult session the previous day. We talked for the rest of the meal and walked back to the conference's main meeting area together. It was fun, and was my first time meeting someone else with the syndrome.

The day's next event was a youth social for the older kids and adults. Even though I was much older than everyone else, I wanted to attend even just for the sake of physically meeting other people with Joubert. The woman running the group started off by asking people about their favourite music, TV shows, etc. It was fun for a little while, but I found that I just couldn't relate to things like iPads, the Disney Channel, and Taylor Swift. I guess I started feeling old. I left about halfway through, and talked to some of the kids later at lunch.

That afternoon was when I was to give my presentation, which I called My Journey with Joubert, Among Other Things. I've posted the video below.

It went over very well, and I got asked tons of great questions. Some, like about walking, talking, etc., I was expecting. Others, about topics like driving, dating, and socialization, were unexpected, but I handled them okay. These questions came mostly from the parents of some of the older kids. Mostly, I found that people were more interested in my stories about going to an accessible summer camp, taking Taekwondo or cute little kid things, like standing on my head or how my first word was platypus (yes, it really was). Afterwards, I got called an inspiration more than I could count. Now, normally I've never really liked that (no idea why, really), but this time I actually did, especially when the compliment came from one of the younger adults.

For dinner that evening, my Dad and I went out. For several months prior to the conference, we had been doing research on things to do or where to go to eat in Minneapolis. While watching shows like Man vs. Food and Diners, Drive-ins, and Dives, we learned about Juicy Lucy's, giant burgers stuffed with cheese. We got excited and decided that we had to try them.

Great timing, Dad...

That night at the hotel, I got a lot more compliments about my presentation. I had one family tell me how much I reminded them of their son, and how their daughter goes to a camp like the one I described going to. A couple parents who had asked me questions, introduced me to their kids, who later wanted to hang out with me. Another family approached us because the father and my Dad were both wearing clothing for two teams with the same name. Their 13-year old daughter, who had Joubert, then started to just come up to me periodically for the rest of the conference.

The Friday had nothing of any particular interest to me or my Dad, so we spent the afternoon playing tourist in Minneapolis. We took a small train through the city and finished the day at the Mall of America.

Saturday the 12th was the last full day of the conference. Originally, I had been asked to moderate a small group about adults with Joubert but, unfortunately no one signed up for it. Instead, some of the parents of the older kids, who had been impressed by my presentation, asked me to take part in a group about teenagers.

I'm in there, but just barely off camera.

I was a little nervous at first, sitting with a group of parents, but it ended up being very interesting. People talked about things like schooling, socializing, and what sort of activities their kids were involved in. When coming up with ideas for future activities, the idea of a Facebook for kids/young adults with Joubert syndrome was brought up. Some of the parents even thought I might make a good moderator for it.

The conference ended that evening with a dinner and dance. I was hesitant to do anything other than eat and take some photos, but one of the mothers got me up, and after a while I was dancing.

Sort of.

The most fun, and the biggest shock, was when a couple of the older kids and their parents wanted me to dance with them. At first, I felt a little old and out of place. As time went on though, I eased up a bit and had some fun.

Caught on camera having fun, also embarrassed.
 

Really nice group photo that I was sort of pulled into.

We left the next morning after many hugs and handshakes, and planned to attend the next conference in the summer of 2015.

Overall, the conference was an amazing, and kind of life-changing, experience. I met so many great people and have done a lot of new things because of it, including writing this blog.

Cheers

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- Photos used with permission.
- If you're interested in learning more about Joubert syndrome, visit the Joubert Syndrome and Related Disorders Foundation website at http://www.jsrdf.org/