2016 Review

For some people, 2016 was a great year. For others, it sucked royally.

For me, it just was. Not to say it was bad or boring. It was just a fairly laid-back year compared to others.

But, it did start off with what I thought was a pretty big thing. January 1, 2016 I got to see Star Wars: The Force Awakens.

Being a major Star Wars fan, the movie alone would've been awesome, but my parents took me to see it at a VIP theatre. That meant dinner beforehand, then watching the film from a large recliner and ordering a root beer float. Seriously, the best way to ring in a new year!

Later that winter, I got an interview for a vocational mentorship program. They felt I was a good fit, so in May I started a three-month placement within Pinecrest Queensway Community Health Centre's Employment Service centre. There, I got to improve my public speaking skills by planning, creating, and presenting a workshop on public speaking skills for interviews.

I also learnt a few new things like how to use Twitter, which I applied to updating and re-invigorating the centre's page. I didn't get any paid employment from it, but was able to experience on-site work for the first time, keep to a routine, and contribute to a professional environment, so all-in-all it was a win.

On either end of the placement, I spent a week at home, alone. Both yielded interesting experiences, like attending a talk by a disabled author (whose books I've reviewed in earlier posts) and meeting a new group of people for a movie.

The rest of the year saw me at the family's cabin a lot. Several long weekends and overnight stays. I even fired a pellet gun, which I wasn't really keen on at first, but enjoyed.

And that's about it.

Already planning some travels, speaking, writing, and inroads to some independence for 2017, so next year should be a lot busier.

Cheers and Happy New Year!

Merry Christmas, Happy Holidays!

With only two more sleeps to go, I thought I'd take a moment to wish everyone out there in the blogverse and beyond a Merry Christmas and a safe, enjoyable, and hopefully relaxing, holiday!

How It Goes

Because this post needed a photo, and mammoths are awesome

Trump and bullying aren't exactly the greatest topics to leave people with for the better part of a month, but I've been a little busy.

After a break for a few months, I've started to look for work again. Only this time, I'm seeing about getting some help from the employment centre where I did my placement. I've inquired about how I could do this, but I suspect it'll be slow going until after the holidays, so more on this if/when it happens.

I've also got a speaking opportunity lined up for the winter! It'll be with the Social Work class I spoke to last autumn, on a panel about family and disability.

And if that wasn't enough, just last week I went in for surgery. It was to get a new set of tubes put in my ears. The tubes are supposed to help with drainage and typically last three to four years. I've had multiple sets and many surgeries throughout my life, so it was nothing. Went in Friday morning, out by that evening. Some soup, ginger ale, and cartoons and I was up and moving by Saturday afternoon!

But, as I posted the first of the month, I have still been writing a lot. Just more free writing than I figured. I'm working on a few posts which I'll publish ASAP, and I've been thinking of some changes I want to make to the book which is still going to happen at some point.

All of this plus half my Christmas shopping done!

Cheers until next time.

When Bullies Win

I hesitate to write this because some people could very well be offended by it, and that is absolutely not my intention. But, I do want to get it off my chest.

Over the past several weeks, I've seen quite a few things related to bullying: Unity Day, an entire day devoted to anti-bullying, a discussion about bullying in a group for disabled youth and adults, an article about conservative author and columnist Ann Coulter's use of the term "standard retard" to describe the man with cerebral palsy Donald Trump mocked during a rally and most recently, a story about a boy with cerebral palsy who attended a Trump event to advocate for better treatment of people with disabilities.

Well, last night I was genuinely appalled to learn that a great number of bullies, including some of the ones mentioned above, got a great deal of power.

I'm not going to get political. To each their own and so on. And I know that being from a different country, I have no real say in events. However, as someone who has experienced bullying first-hand and has both written and spoken about anti-bullying, I will say that, on a human level, the events of last night disturb me.

What worries me is the thought that those now-influential people have the power and ability to act on the crazy and ignorant things they've been speaking about for the past several months. Things that could alienate and do harm to many people. They also have a platform with which to insult and push around even greater numbers of people.

Again, I'm respectful of people's personal beliefs, and what's done is unfortunately done, but this kind of stuff needs to stop! We need to stop making excuses, get past petty grudges and differences, and show these people, and others just like them, that misogyny, racism, and other forms of discrimination are not acceptable.  Otherwise, all the anti-bullying, advocacy, and messages of hope and equality will mean nothing.

And with that, this rant is over.

Cheers

Writing Month

November is Nanowrimo, or National Novel Writing month, and while I'm not writing a novel, I will be using it as an excuse to do a month full of writing.

I've been sitting on a couple blog post due to both thinking them over and laziness, and this, I think, will be good motivation to finally load them on here. I also want to start the book I said I was going to do, though I've decided make it less about actual transitioning to adulthood with a disability, and more about just coping and living with a disability. But, more on that later!

And, just to break up the seriousness a little, I'm thinking of revisiting some of the projects and characters I made in Scriptwriting for some fun writing exercises. Maybe something good will come from those!

Should be an interesting thirty days.

Cheers.

Review: Switched On by John Elder Robison

Back in April, I had the pleasure of attending an event where John Elder Robison was promoting this book, and I finally got around to reading it.

Robison is autistic. His first book, Look Me In The Eye, which I read and reviewed earlier, was a memoir about growing up un-diagnosed. Switched On, his latest, is about Robison's involvement in a research trial to try and stimulate emotional awareness in individuals with autism through a process called transcranial magnetic stimulation (TMS for short), and it's results.

The science behind TMS is hard to explain in a blog post. Parts of the book where it's described mention lasers,  magnets, neuroscience, and other things that went way over my head. The procedure itself involved about a dozen sessions of Robison having parts of his brain stimulated non-invasively. Before and after each session, he was required to do simple exercises where he would identify words, objects, and people's facial expressions to gage his emotional responses and understanding.

After one of the first sessions, Robison was driving home, listening to an old tape of music. He had heard these songs many times before. Robison writes that he could identify the basic emotion of the song (happy, sad, etc.), but he was always more in tune with the instruments and equipment than the lyrics and feeling of the music. But, on this one night, Robison says that the music "came alive."  The emotion of the music finally hit him. It was so powerful, he was brought to tears and had to pull over.

The book continues with Robison's new-found emotional awakening. For a while, he describes a heightened awareness like being able to "see inside people's souls." This would ware off, but his better understanding of people's emotions would remain.

Robison chronicles effects of the TMS sessions, both good and bad. On the upside, several Robison's friends and customers noticed an improvement in his social skills, and an increased attentiveness when listening to people. On the negative side, Robison writes about how his increased awareness of emotions opened his eyes to his then-wife's chronic depression and started to drag him down.

Switched On ends with a fairly lengthy, but thought-provoking discussion about some of the ethical concerns that could potentially come from procedures like TMS. Robison writes a lot about cures for autism and other disabilities and conditions and whether those afflictions should be cured, and brings up the idea of difference and uniqueness in people like himself, using his own proficiency with electronics as an example, and whether or not gaining social awareness but losing those unique qualities is a worthwhile trade-off.

Despite being way too technical and science-heavy in parts, Switched On was still a pretty good book to read and, like Look Me In The Eye, I would highly recommend it.

Cheers!

It's Just Doughnuts

A while ago, I was reading this article about a mother's reaction to her disabled son being given free doughnuts out of pity from an incorrect assumption that the boy couldn't talk.

The staffer was in the wrong for making an assumption like that, and I can understand why the parents were upset, but my first thought upon reading this article was "It's just doughnuts." The boy obviously wanted a treat and, even though it was out of pity, the staffer still did a nice thing.

My point is that sometimes, free stuff is just free stuff. Regardless of the giver's perceptions, you should be appreciative (especially when it's something this small) of the person's generosity.

Over the years, I've received many gifts and freebies because of my disability, ranging from t-shirts and CDs to artwork and hockey tickets. I even got a cash award at my high school graduation for "being a special needs student going into college or university." Some of those gifts were probably given because of pity, but some of them weren't. I never questioned why. I just accepted them, was polite, and put them to good use.

So yeah, people will treat you or your child differently because of a disability. It's pretty much a given, unfortunately. But when it comes to free stuff, just remember to be polite, be thankful, and just enjoy the doughnuts.

Cheers! 

We Could All Use Some Quokkas In Our Lives

 

That's a quokka. They're a small Australian marsupial, and they always look happy. With what seems like so much aggression and mean-spiritedness in the world lately, I really think we could use more of these little so-and-so's. 

 

Everyone knows about grumpy cats and sad pandas, but there's also tons of photos of these little guys online, each more pleasant and goofier than the last.

 

Yes, that's a real photo!

 So the next time you feel you're being inundated with negativity, especially online, take a moment and look at some quokkas. I dare you not to smile afterwards.

 

Cheers!

 

 

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!

What's Been Up Lately

Photo from a recent trip to the Museum of Nature

I was reading the blog the other day and realized that over the last few months, I've written almost exclusively about my placement, but nothing else.

So, aside from the placement, the last month or so has been pretty interesting, and I did a few (to me, anyway) major new things.

From the end of July until the second week in August, I stayed home alone while my family was down east. Between the placement, saving for next summer's Joubert conference in Phoenix, and a few other things I had going on, I just thought a staycation would be more convenient.

However, unlike other solo staycation's I've had, I wasn't just lounging around the house for a week doing nothing.

That first weekend, I went to see the latest Star Trek movie with a new group of people I had met on a group for single/social nerds of Ottawa-Gatineau. Yes, you read that correctly, I joined a singles group. I had been on the group a few days earlier, and had seen a discussion between several members living in my part of the city. A few said they were seeing a movie over the weekend and asked if anyone wanted to join them. After what seemed to be a long while of nervousness and hesitation, I said I'd like to go, and I did. It was a pretty big step, and I look forward to similar activities in the future, if they happen.

That Monday was a holiday but Employment Services was open, so I decided to go in to make up some hours and keep to a routine. There were only three other people there, so it was pretty relaxed and I got to leave a bit early.

Later in the week, I had a meeting with folks from Abilities First Ottawa, a local organization that helps people with disabilities become more independent, to go over plans for their annual barbeque fundraiser in September. I had been given info about them during a networking workshop for my placement, and contacted them shortly after. The woman I contacted, who's the group's executive director, was very interested in my speaking and writing, and encouraged me to participate.

The meeting went well. The fundraiser seems like it will be a great event. The people involved are pretty nice too, and immediately welcomed me into the "family" with a late dinner at East Side Mario's (Italian restaurant)! Was initially hesitant to go to dinner but, like with the movie, I sucked it up and had fun.

Along with all this, the universe had another new experience in store for me! Near the end of the week, I had and interview with a woman from Citizen Advocacy, another Ottawa-based disability organization. The week before, I had sent an email asking for information about a job posting. Unfortunately, I didn't meet the exact qualifications for the position. Fortunately though, the woman who replied was very interested in my speaking, writing, and workshops, and wanted to meet to talk about it!

During the interview, I was told that my advocacy background would be a perfect fit for an transitioning event Citizen Advocacy has coming up, and the woman who met with me wanted me to send her more information on the topics I've covered in the past to present me as a speaker to some of her co-workers. Best of all, she thinks this could maybe (knock on wood) lead to paid work with the organization! Still waiting on this, so fingers crossed.

And, that's about it. Like I said in my last post, no paid work yet, but stuff's certainly starting to happen!

Cheers

Placement Wrap-up

Last Wednesday was the final day of my placement with Pinecrest Queensway's Employment Services, and it was a pretty good day. Everyone there was super-nice and appreciative of the work I did over the three-month period. Some of them even offered to keep an eye out for any jobs that might interest me. I also got a nice thank-you card and cookies before I left!

This placement was my first experience working somewhere for more than one day a week, and I learnt a lot. The biggest experience was obviously the opportunity to research, create, and present a professional workshop.

Even though it would have been great to have been able to present more, the important thing is I did it. I got some excellent feedback, and my skills as a presenter even got me an interview with a local disability organization, who think I'd be a good speaker for an upcoming event (more on this in a later post)!

The second big thing I was tasked with, was maintaining the center's Twitter page. Before this placement, I had only used Twitter once before, a few years ago for a one-month online course and even then I never really used it often. So, I was very surprised by how quickly I took to it.

Before actually posting anything, I had been asked to develop a social media plan in order to update the center's account. I came up with ideas to post things like daily motivational quotes, sayings, and photos, usually related to employment, links to local employment and networking events, tips and lists, and success stories. It wound up being kind of fun, and everyone at the center immediately recognized and praised my efforts!

#SoAmIATwitNow?

 Along with the work itself, I had to participate in bi-weekly peer support meetings. These gave participants the opportunity to share what everyone was doing and engage in workshops about topics like interviews, dealing with stress, and networking. The networking workshop was incredibly useful, and led to both an interview and volunteer opportunities with a local disability organization.

In the abstract sense, the entire placement experience was also a motivator. I don't do well without some kind of routine, and the placement allowed me to get into a pretty good one. Four hours for three days a week, up early, bus there and back (Para Transpo was almost always on time, too!), all for three whole months.

Now that it's done, I'm trying to ride this routine, and the burst of productivity it's given me, for as long as I can!

I don't have any paid work yet, but I do feel I'm a couple steps closer to finding it. At the very least, this placement has helped me to zero in on what I really want to do and go from there.

Overall, it was a really good experience, and I would definitely recommend this type of program to anyone with a disability looking for a job, or even just experience.

Cheers!

One Workshop Done, Another To Go

This past Monday, I presented my first Public Speaking Skills workshop at the placement I'm doing.

Despite nervousness which, ironically, I was speaking about, and fewer attendees than I had expected, it turned out pretty nicely. I got some good feedback from both participants and my mentor in regards to areas like audience participation, maintaining eye contact (another point I brought up - so much irony!), and including more about myself.

And, I will be able to work on all of this sooner rather than later because they want me to do another workshop on August 8th, just before my placement's finished!

Fingers crossed that the next one gets even more attendees.

Cheers!

Placement, Advocacy, and Work Maybe??

Well, I've been pretty busy lately, especially this week. In the home stretch of my placement with Pinecrest Queensway, and my public speaking workshop is officially a go for this Monday afternoon! Unfortunately, there are no work positions within Employment Services similar to what I'm looking for, but I did get pointed in the direction of another department within the organization, and they offered to help me out if I ever do find anything.

Along with the placement, I've really been looking into work and advocacy lately. A few weeks ago, I attended a presentation by a local networking group for participants of the placement program. The presenter asked people what they were doing and what kind of work they were interested in, to which I said disability advocacy. After the presentation, the presenter gave me his card and asked me to email him. I did, and he replied with contact info for a couple local disability organizations.

I eventually emailed both places, mainly looking for employment, but also possible advocacy opportunities. One place got back to me within a day, and this week I had an interview with Rise Asset Development, an organization that helps people with mental health and addiction issues get funding for entrepreneurial efforts. The interview went well, but didn't yield anything. However, that afternoon, I chose to follow up with the other organization I had contacted, Abilities First Ottawa. Nothing in terms of employment, but they were impressed enough with my background that they want me to sit on the committee for a barbeque fundraiser in September. Not quite what I was expecting, but it's a foot in the door!

I'm also sent some stuff off to The War Amps, and am waiting to hear back, so fingers crossed there.

Cheers

Over a month since my last post? Really??

Wow, time sure flies when you're doing stuff! And by stuff, I mostly mean my placement.


And speaking of the placement, it's now officially past the half way point and going pretty well. The people at the employment centre are friendly, the work, despite one or two setbacks, is good, and Para Transpo actually arrives on time most times!

I started off almost solely focused on developing a workshop on public speaking skills for interviews, with a focus on staying confident. The presentation touches on overcoming nervousness, how to prepare and present an elevator speech, and taking things one step at a time. The first date was scheduled for last Monday but, unfortunately, the workshop was cancelled due to lack of registration. I was a little bummed at first, but was told that these things are common this time of the year, with graduations and other end-of-school events going on. At least I'm well prepared for the next one scheduled for later in July!

In the meantime, I've been pretty busy coming up with ideas of how to improve the employment centre's social media presence then implementing them. It's actually kind of fun. I'm updating their Twitter page (I can hashtag now!) with postings, tips, and inspirational stories and images. Soon, I'll be on Instagram (which'll be completely new to me), writing "stories" based on what goes on at the centre.

All this plus progress meetings every two weeks, leads on some potential work/advocacy opportunities, and a family vacation, and the rest of the summer's going to be busy too. And, I'm actually okay with that.

Cheers!

Review: Look Me In The Eye by John Elder Robison

I recently finished reading Look Me In The Eye by John Elder Robison. About a month ago, I attended a talk by Robison here in Ottawa where he was promoting a new book and speaking about his life with Asperger's. At the time, I couldn't quite afford his newest book, so I opted for this one.

Look Me In The Eye is a memoir about Robison's life up until a few years ago. It starts off in the early 60's with his childhood and inability to make friends due to social awkwardness caused, in part, by his then undiagnosed Asperger's. One trait he writes about, that I sometimes struggle with, is the inability to make eye contact with people. He eventually did make some friends though.

Later, low grades and serious issues with his parents would lead Robison to drop out of high school. One of his passions had been mechanics and repairing electrical equipment. This got him involved with the music scene as a mechanic and roadie for a local band. He began associating with the likes of Black Sabbath and Pink Floyd before being asked to go on tour with April Wine. After that, he built smoking and flaming guitars for KISS. When music was no longer lucrative, Robison joined a toy company and helped design some of the first electronic games.

Eventually, he married his high school girlfriend, had a son, got married again, and started working in the auto industry, where he now manages a company.

All this is inter-mixed with thoughts on Asperger's, the Autism spectrum, and disabilities in general. Robison was diagnosed with Asperger's in his forties by a friend who was also a therapist and felt he was a textbook case of the syndrome.

Since being diagnosed with Asperger's, he has written several books and has also become an advocate for people with disabilities. One thing I found interesting in this book was how shocked he was by the positive feedback from people with various disabilities, especially autism and Asperger's, as well as family members, and how the book helped them to understand themselves or their loved ones a lot better. I know it definitely had that effect on me!

I don't have autism or Asperger's, but I do have some traits that I now realize are typical of those conditions. It's never been something I've been comfortable even thinking about, but this book has finally made me feel comfortable with openly acknowledging and admitting that yeah, I do have some autistic traits. But, more importantly I think, it's also made me go "so what."

Looking forward to reading Robison's next book, Switched On.

Cheers!

TCAF 2016

 Another TCAF (Toronto Comics Art Fest)/solo trip to Toronto under my belt!

While not as fun as previous years, this time was still enjoyable. Despite foul forecasts, the weather held up and I was able to get out quite a bit and walk around.

While searching for a place to eat on the Friday after I arrived, I managed to find Big Smoke Burgers, a really good little burger place that I had missed somehow on my previous trips. Seriously good burger and onion rings! Then I bought some comics at the event's store. I'll explain in a second why this turned out to be a really smart idea.

The next day I got up, had a breakfast consisting of several things I had stocked up on the night before in order to save money and avoid junkier food items and attended a panel being held right in the hotel which was a spotlight on a new book about a futuristic war between Canada and the US. I bought the book the previous evening, and it was really good.

So, it turns out buying some things early was a good idea because TCAF this year was packed! They had to add another venue solely for their featured guests. And, while that was busy, it didn't begin to come close to how crowded the main venue was.

Picture three floors of this!

Now, TCAF has always been pretty crowded, but this year was insane! I could barely find room to check out some of the tables. Just walking around was tough! So, I did a once-over of the three main floors, got a couple things, and got out of there fast!

While not as big as previous hauls, I did still mage to get some good stuff this year.

After making it out of the fest's main location, I was glad that the other events I wanted to attend that day were all at my hotel. Went out later to get some snacks, then stayed up late watching TV from the comfort of a gigantic bed which I'm currently missing way too much!

Got the train home the next day, and that was it.

While I had lots of fun, the crowdedness of the event and the higher cost of the trip itself makes me think that it might be time to move on from TCAF/Toronto and find a new, less expensive place to go in the future. It was good while it lasted.

So onwards to new adventures, I guess!

Cheers

A Placement and Other Interesting Things

I finally got a placement within the job mentorship program I wrote about a while back.

This was my first week. The placement is twelve hours a week, so Monday, Tuesday, and Wednesday mornings, with progress meetings twice a month and runs for three months.

This week, I'll primarily be attending workshops, getting to know people, and learning how things operate but, eventually, they want me to run my own workshop about public speaking in regards to interviews, self-promotion, and "elevator speeches." They would also like me to work on a "Humans of New York"-style project for social media. Should be interesting!

The only downside is that I've had to take a hiatus from volunteering with the treatment centre, but this is the first major work opportunity I've gotten in two years, and I offered to help if needed on my down-time.

Speaking of the treatment centre, I'll be attending an advocacy event there later in the week.

Something else that might make me busy for a while is an Abilities Centre, which would include athletic facilities, arts, and life skills programs, planned to be part of  a new development project here soon. The creation of the centre is being organized by a woman who works at the treatment centre I've been volunteering at, so I sent her an email about the possibility of getting involved with the project somehow. Hopefully something comes out of it.


Cheers!

Independence Ain't Cheap, But It Sure Is Aweome

Well, I've got my weekend booked for another year of going to the Toronto Comics Art Fest and it was a little more expensive than last year. But hey, it's worth it!

Almost an entire weekend completely on my own, over four hours away from family, lots of comics and, knock on wood!!, good Springtime weather!

Sure it's a lot of money for (really) just two and a half days, but for the past few years this trip has been something I wait for, plan for, and save for all year. I can't really go a lot of places during the winter, and major trips to far away places aren't really my thing (at least for now), but this TCAF weekend is something I can do totally on my own and more importantly, my parents are okay with me doing it on my own. So, I treat it as a "spend more to get more" kind of situation. And my mom taught me how to save on food, so that's cool!

It should be a great time and I will absolutely take plenty of photos for a big post when I come back!

Maybe this time, some of them won't be quite as horrifying. Haha!

Switched On

Yesterday evening, I attended a talk by John Elder Robison, an author promoting his book Switched On, as part of the Ottawa International Writer's Festival. Robison is autistic and his book is about how he received an experimental treatment called transcranial magnetic stimulation (TMS) to help him better understand other people's emotions.

It was a pretty interesting event. I can't remember enough about the treatment itself to write about it, but the rest of what Robison said will probably stick with me forever.

See, autistic traits can be common in people with Joubert syndrome. I've never wanted to acknowledge this and have been uncomfortable even hearing about it, even though I display a few autistic traits myself. I guess it's because of fear of people perceiving me as something less than what I am. This fear has led to some thoughts and comments that have ranged from negative to out-right rude.

But hearing this man speak about his experiences which ranged from growing up with a disability to being a technician for rock groups like KISS and April Wine to being an advocate for those on the autism spectrum was quite moving. It actually almost brought me to tears.

Robison spoke about, among other things, how people should not be ashamed of being on the spectrum, of society needing to change the currently negative connotation surrounding autism and Asperger's (especially in the media), and how people need to advocate for themselves and each other.

After a Q&A, I went up to him, thanked him and told him a little about Joubert syndrome and my advocacy efforts. It was the first time I actually acknowledged to myself and in public that I have autistic traits. It felt pretty great!

The book he was speaking about was a little bit out of my price range at the time, but I did get his first book, a memoir called Look Me In The Eye.

Should be interesting.

Cheers!

Ten Fun, Interesting, and Random Facts About Me

Last month I found a thirty-day writing challenge, which I've decided to do this month. It's nothing you can submit, just thirty random topics to keep you busy.

I'm feeling kind of bored and lazy today, so I thought I'd share one of the topics from a few days ago on here, just for something fun to write.

Here's ten interesting and random facts about me:

1. I have a black belt in Taekwondo

For many years, I took a special needs Taekwondo class, and got as far as a first-degree black belt before college busyness forced me to give it up.

2. I’ve received the Award of Fortitude for scouting

At eight years old, while I was in Cub Scouts, I received the Award of Fortitude for scouting from the Governor General of Canada. I was nominated by my former Beaver leader and many other people who knew me.

3. My first word was platypus

Yo!

When I was little, I couldn't talk but all my other cognitive abilities (memory etc.) were fine. I also needed my parents to do chest physio and use a nebulizer to help with my lungs. Doctors told them to get into a routine with this, so they would do it while watching National Geographic and other nature programs. One day, everything came together, and out came "platypus!"

4. I have a rare genetic disorder

Everyone knows this one by now, but I figured I'd go for it anyway.

5. I've always been obsessed with cryptozoology, Bigfoot, and other monsters

I've always believed in creatures like Bigfoot and have been fascinated by monsters since I was little. I think teachers used to think I was weird for constantly taking out and reading monster books in school.

6. I almost studied Paleontology

Before applying to Scriptwriting, I seriously looked into Vertebrate Paleontology. I like dinosaurs so I figured, why not? I would've been Ross from Friends, minus Jennifer Aniston and the monkey! Realism set in soon, I realized that million year old fossils and a coordination issue might not mix well, and I decided writing about prehistoric stuff would be a safer move.

7. Pigs are my favourite animal

Seriously, they're awesome and adorable.

8. I've been regressed to a past life

I was attending an Easter Seals conference in my late teens, and the first night was set up with lots of vendors and activities. One of those was a woman who specialized in past-life regression. It was really weird. The woman took me back through events at certain ages like my early teens and when I was six, and then into a past life.

I was in a house with a lot of windows on a rocky beach, doing something involving drawing and looking at a woman who could have been a wife or girlfriend. She was pregnant, and I felt happy. Then I was looking down at an old man, most likely a grandfather or father, and felt sad. He seemed to be dying. I still can’t think of any explanation for what I saw or felt!

9. I enjoy both flying and public speaking

A lot of people consider these to be two of the scariest things to do, but I actually like them. I love the sensation of a plane taking off, the roar of the engines and then the g-forces as you go higher. It's also so cool looking out your window when you're above the clouds, especially at dawn and dusk!

As for public speaking, I've done it for so long now (thirteen years!) that I'm just used to it. I've never really ben scared of talking in front of strangers. Ironically, the most nervous I've been before a presentation was at the Joubert conference in Chicago this past summer, where I knew two-thirds of the people in the audience.

10. I've been on the national news

Months after I was diagnosed with JS, my mother and I were interviewed as part of a piece about Joubert syndrome and genetics for CTV News. A team including a representative from the Children's Hospital of Eastern Ontario (where I was diagnosed) and two camera men came to my house one afternoon and set up the interview, which was done via an ear piece/microphone with CTV's national health correspondent. She interviewed my mother and I, then the camera men got footage of photos of me, my mom and I talking (which was seriously weird to do), and me doing tasks like walking upstairs and typing.

The piece aired Christmas Eve, 2011. I was between Vladimir Putin and Santa Claus! The video, which made me realize I've got a gigantic bald spot, is no longer online, but the written version is.

And, boredom solved.

Cheers!

Burdens?? *Rant*

Yesterday, I read this article (here) about a college professor and his family being denied residency here in Ontario because his thirteen-year-old son has Down syndrome, and the country feels this boy would prove to be a financial burden on the health care system.

I was shocked while reading this.

I've heard of similar situations elsewhere, but I cannot believe a country like Canada would possibly be this ignorant to it's own citizens. Regardless of what may happen to him in the future, it's a shame that certain people in this country currently consider this boy a potential burden. And if someone like this is considered a burden, where will it end? Do we start denying assistance or citizenship to anyone who requires some kind of extra help or care. It may seem like a stretch now, but this could very easily turn into a slippery-slope kind of issue.

Maybe if governments like Ontario's put more money and effort into providing services for the disabled instead of doing things like trying to close specialized schools, then maybe children (and adults) such as this would be able to receive better care, and they and/or their families would not be put into situations like this.

I sincerely hope this boy and his family get help and are able to stay in the country.

Whole Lotta Updates

Well, Five for Five took way longer than I thought it would. But, it's been a pretty eventful month.

The month started with a seriously long eye appointment. Four hours! It was my first in over a year, so it was already going to a while, but yeah. Dilation, freezing, and plenty of photos and other tests. What made it longer was that there were some small discrepancies with one of the vision tests. Long story short, they had me see a retinal specialist who diagnosed me with coloboma.

Coloboma is a hole in one of the structures of the eye, the retina in my case, caused by a genetic defect where certain nerves never formed when I was being born. The doctors call it a freckle behind my retina, with just a tiny bit of fluid around it. Nothing to worry about. It just means that my left eye is a little bit weaker than my right. On a more interesting (maybe) note, I found out that Paris Hilton has Duane's syndrome (effects eye movement) like I do. So that's a thing, I guess.

Then a fairly nasty cold starts making it's way through my family, so of course I get that for a while. But, I got better just as the weather started to improve and was able to get downtown again for an afternoon! I went for lunch, did some writing at one of my favourite coffee shops, and bought a couple comic books, which were much easier to carry around, thanks to a new bag I got for Christmas.

Bigger than the old one, but much more convenient.

Shortly after that, I got some good information about an advocacy event happening in May, which I registered for, and a job mentorship program for people with disabilities, which I also registered for.

The program is run by an Ottawa-area community health centre which focuses on the social aspects of healthcare. The program runs for three months and would place me with a mentor in a position with their organization, ideally something writing or advocacy-related but I'd settle for data entry or office admin if they can't find anything else.

I had an interview scheduled but before I could do that, I finally decided to bite the bullet and get new shoes.

A while ago, I wrote about needing new shoes to fit a pair of inserts. Some friends, whose kids also have Joubert, recommended New Balance so that's where we looked first. The people working there were really helpful and knew a lot about inserts and AFO's. I got a pair that fit and got elastic laces which are really easy to use.

Then came the interview. Everything went very well. Nice place, nice people, program sounds good. They think I'll be a good fit and are currently trying to find a suitable placement for me!

And finally, the month was capped off (yesterday) with more good weather and another trip downtown.

Cheers!

Five for Five: Impact

Teen/Adult discussion group, JS conference in Chicago. Photo used with permission of some of the parents.

Finally finishing this! Sorry for the long wait. Life and stuff.


5. With JS, I'm learning that what I do has an impact

Not that I didn't know this before I was diagnosed with Joubert syndrome. And I'm not being self-deprecating either. It's just that, in the last couple years (or even just months!), I've started to see the personal side of what I say and do.

I've actually met people who have read/are reading my writing and are watching my presentations. Furthermore, I've met other real, in-the-flesh people with JS (including, among many others, the awesome folks in the photo above!)

Hearing from parents, siblings, and other family members is great, but it's the other people with this disorder who have shown me how much of an impact I can have.

To me, interacting with other people with Joubert is better than any hit on a YouTube video or random "Like" on an article from someone I'll never hear from again. I get to know them personally, what they like and dislike, and what they feel they can and can not do. And, most times, they seem thrilled to be able to share!

I may feel like an "old-timer" sometimes when speaking, answering questions, or interacting with kids half my age, but it's worth it when I get an inkling that something I've said or done could allow a younger person with Joubert to be a little more independent or feel a little better about themselves.


Cheers!

Five for Five: The Riddle That Is Me

Yo!

4. Joubert syndrome has made me want to learn about myself

Since being diagnosed with Joubert syndrome, I've found that I'm very interested in learning about myself. What makes me tick, and why?

One of the interesting things about being diagnosed with JS as an adult is that I can go back through my life, health, and development and look at things with a new perspective. Certain health issues and surgeries stand out more, and various quirks and personality traits that neither my parents or I would've given much thought to before, like headstands, get seen in a whole new light.

It becomes even more interesting when I see or hear of another person with JS exhibiting similar traits. I know everyone with the syndrome is unique so I try and take things with a grain of salt but still, sometimes it's fun to compare and ask questions.

The neurology and psychology of the syndrome seem to fascinate me the most.

Joubert syndrome effects the cerebellum, which influences functions like speech, coordination, learning ability, and possibly even dreaming. I'm always amazed by how such a relatively small part of a part of my body can control so much, and how much screws up (sorry, I can't think of a better word for it) because something happened to it. I'm also amazed by the fact that the cerebellum is affected in everyone with JS (so, the exact same part of the brain), yet everyone with the syndrome is so vastly different and unique!

So, I guess the takeaway here is that, with all the difficulty, frustration, sadness, and general suckiness (this, like blogiversary, is a word too!) that can come with it, a rare disorder can actually be kind of awesome sometimes, from a certain point of view.

Cheers!

Five for Five: Small Talk

3. Sometimes, people just want to talk


When I first spoke at the Joubert conference in Minneapolis, I was all set to talk about what I thought were really important topics like my experiences with healthcare, housing, and therapies. When I was asked questions about these and other topics, I tried to go out of my way to be formal and follow up with people. What I quickly realised was that sometimes people just want to talk, not be educated about something.

For example, one person had asked me about housing, and what I was looking for. Sort of foolishly, I kept going up to her afterwards, assuming she wanted more info. In hindsight, I should've realised that her question was just a question, and she was probably more interested in me interacting with her daughter.

This became a trend for the rest of the conference. Less educating and talking about the "big ticket" topics, and more time socializing, talking about little similarities like summer camps, school, and comic books, and being there for the other youth with JS.

I carried this over to the blog and later, the conference in Chicago, where I tried to be less informative and more conversational. I focused less on the topics I used to think were so crucial, and more on issues like bullying and success stories, stuff that everyone can relate too. And, you know what? I'm getting more positive feedback now than I ever did from talking/writing about the "big stuff".

So, while it's important to share about doctor's appointments, assistive devices, or housing registries, remember that sometimes it's just as important to ask "Hey, what's up?"

Cheers!

The Brain You Are Looking For Is Currently Unavailable

*Temporarily

To anyone out there who's been following my recent Five for Five posts and patiently awaiting numbers 3-5, I apologize. Been getting over a cold the last couple days. Add to that a seriously long doctor's appointment this past Tuesday, and my brain's sort of fried at the moment.

Seriously though, the post are coming. Eventually. At some point.

Cheers

Five for Five: It Is What It Is

 



I know this should have been up yesterday, a four-hour doctor's appointment (eyes, everything's okay) combined with a head-cold really messes with your brain.


2. It Is What It Is

There's a lot about Joubert syndrome I could question, and there's a lot about it I could worry about. And sometimes, I do both. But lately, I've learned that there are things you're better off just taking as is.

With Joubert syndrome being as rare as it is, and everyone with it being very different, it can be too easy to read into certain things a little too much, and can really get you down. I know from personal experience. But now, I try my best to stay positive and I don't worry about the things I can't change.

If something happens, I'll deal with it then. For now though, it is what it is.

Five for Five - It Really Is a Small World

Today is Rare Disease Day and this week marks five years since I first heard about Joubert syndrome. So to honour both, I'm taking this week to write about five things I've learnt in five years with JS.

1. It's a very small world

Thanks mostly to the Internet and Facebook, I've learnt that the world becomes incredibly small when you have a rare disorder. It's such a cool thing to be able to look up photos, videos, and articles about Joubert syndrome and instantly know, or at least recognize, the people in them!

Medically speaking, I've now got people looking out for me all over North America. My geneticist here in Ottawa, specialists from the conferences in Seattle and D.C. I've even got doctors in Boston and Montreal looking for my gene.

Personally, I've got friends from all over the world! The first adult with Joubert I met was from Sweden, and I've since met others from Wales, Holland, and even Australia. For my 29th birthday, a year after attending the Joubert conference in Minneapolis, I received birthday greetings from people as far away as Malaysia!

It's so great to be part of such a small, worldwide community, and I'm excited to see it keep on growing.

Cheers!

Reject Negativity

Sorry for sounding blunt, but sometimes being disabled can really suck. You can think about phrases like "Hang in there", "Just keep swimming", or "Keep calm and whatever", but sometimes these just don't work. However, just because things might suck sometimes, it doesn't mean you have to give into negativity.

A few years ago, I let issues with Para Transpo, housing, home-care, and even the winter weather get the better of me, and I put myself in a real rut. I got out of my funk fairly quickly, but the negativity remained.

Very recently, I found out that a friend of mine, who also has Joubert syndrome, is going through some stuff. *Withholding my friend's name, and what that "stuff" is for obvious reasons.*

My friend's extremely positive attitude in dealing with the aforementioned "stuff" is a real inspiration (and that's not something I say often!) So from now on, thanks to this inspiration, I am going to try my hardest not to be as negative, especially towards things like the issues I mentioned above.

In fact, it's already working. I phoned to check on housing updates this morning, and didn't even get the slightest bit mad when they told me there wasn't any real change!!

So, even when things seem the worst, don't go to the dark side (even if they promise cookies!)

Cheers

Two, Deux, Dos, and So On

This weekend is The Rare Writer's second blogiversary (that's absolutely a real term, I swear!) Thanks to everyone for the continued readership and support. Looking forward to a great third year.

Cheers!

Idea Days

For the past several Thursdays, I've been doing what I call an idea day. I get the bus (Para Transpo, for now) to one of my favourite coffee shops nearby for a couple of hours, get something to drink (chai latte usually), a bite to eat, then I write.

I come up with ideas for the blog, the book, and/or, as of right now, an idea for an advocacy-related event that I may or may not try and make happen for real. Sometimes, like today, I just take a book and read. Overall, it's just a good opportunity to get out, especially now during winter.


Cheers!

My body's in a blizzard, but my mind's in Montego Bay

Remember before Christmas when I wrote about out-running Old Man Winter? Well, today he's putting a serious beating on Ottawa and the surrounding area.

Clipart, because I am NOT going out there today!

It's days like today, and ones this weekend that felt like -40 Celsius, that make me want to go back to the resort I was at outside Montego Bay, Jamaica for Christmas 2010. I would give a lot right now to go from the white stuff back to this:

Relatively shallow Infinity pools, sun, sand, jerk pork/chicken, free Coke at a swim-up bar, and copious amounts Bob Marley music.

Cheers!

Headstands and Handwriting

With all the "big-ticket" issues associated with disabilities and rare disorders, it can be easy to overlook the small, seemingly random things people have in common.

This week, I was scrolling through a Joubert syndrome group on Facebook and saw a photo posted of a little girl doing something similar to what I'm doing in the photo above. My parents and I have always called them headstands, and I've seen other photos of kids with JS doing the same thing, So, I shared that photo and asked if any other kids do/did it. I was shocked and amazed by how many parents responded with their own headstand stories. There were even a few photos, which were awesome and pretty cute!

We never knew why I did it, but according to some comments on the post, it has something to do with sensory regulation and stability, which makes sense given other things I've learnt about Joubert syndrome.

Another example of something small turning out to be a big similarity to others with Joubert is handwriting.

Several months ago, this article circulated on social media. The article is about a man missing part of his brain, the cerebellum, how he functions without it, and what can be learned about the cerebellum's function because of it. The cerebellum is one of the main parts of the brain associated with Joubert syndrome. The syndrome's effect on the cerebellum can cause issues with tasks like coordination, learning ability and handwriting, apparently.

In the article, there is a photo with an example of the man's handwriting. Well, it's my handwriting too.

And, from the comments of a couple of parents in the Joubert community, it's THEIR kid's handwriting as well!  Kind of interesting.

I guess the takeaway here is don't hesitate to share the small details, regardless of how goofy or random they may seem. You might just learn as much from these as from the bigger things.

Cheers!

Self-promotion & Putting Myself Out There

I've written before about needing (and wanting) to work on self-promotion and putting myself out there. Well, I've decided to take a couple steps towards that.

Recently, I asked around on a disability advocacy group about tips for speaking. I got a reply suggesting that I join advocacy groups as a way to network. So, I've decided to do that. First, I'm going to become a member of CORD, The Canadian Organization for Rare Disorders. I attended one of their conferences a couple years ago. The membership fee is cheap and the potential contacts and information I could get out of it could be well worth it. Plus, if things ever line up for me to attend another conference, I just may get to travel some more and that's always a bonus!

Second, I'm seriously going to look and see if there are any advocacy groups here in Ottawa that would be good to join. This part could take a bit more research, so I'll post updates when they come.

And lastly, I've decided to start writing for another website again. The blog is great, but the site I just contacted, which will remain nameless for now, has an actual Contributors page, complete with photos and brief bios of each person. So, if the response is positive, I could literally get my face out there!

Finger crossed, and I'll post updates when/if they happen.

Cheers!

LinkedIn

 

 

Just a quick post to say that I (Scott MacLellan) am now on LinkedIn. I recently joined after a couple recommendations, and have set it up as another step to professionalism, and to promote my speaking, writing, and advocacy. Any invitations would be greatly appreciated!

I'm still trying to figure out some of LinkedIn's features, but it seems to be going well (a friend just endorsed me and some of my listed skills, which I guess is a good thing!). Excited to see what comes out of it.

Cheers

Dream Nothing

Twenty seven years ago (that's all the way back in 1988!), my mom started writing about me in a journal called The Dream Nothing book. She started in '88 when I was three and continued until 1995. The book goes from my birth all the way up to past my tenth birthday.

My mom writes mostly about surgeries, doctors, therapies, and other bits of medical or developmental info. But there's a lot about me growing up, as well. It's kind of funny going from one paragraph about a certain major surgery to another about the Terrible Two's, or from a major milestone like my first steps to my first boy-girl school dance!

The Dream Nothing Book also revealed a lot of things I hadn't known about myself, some kind of shocking. I've died at least once, after my lungs collapsed after an MRI. I also learnt that I had shockingly low self esteem when I was younger. On the lighter side, I learnt that my first word was platypus and my love of pigs started at barely four years old after seeing pig farms while camping in Prince Edward Island.

My mom's last entry was November of 1995. Flash forward to Spring of 2009. I knew this book existed, but I had never actually read it until this point. So, I read it and was pretty amazed. I was so moved that I decided to add to it myself!

As a gift for her birthday (in July), and as a way to stave off boredom while I was home doing next to nothing (this was before I took Scriptwriting), I began writing about almost fifteen years worth of personal, medical, and family events. From the beginning of Grade 5 through college. I chronicled numerous birthdays, surgeries, Christmases, vacations, Tae Kwon Do tests and sledge hockey games and sadly, even a couple deaths and screw ups.

I gave the new material to my mother as a present on her birthday that year, which she read while on vacation.

I've added a couple more entries over the years. Each time, I say it'll be the last entry and each time something new and exciting happens that's worth writing about. My mom has even said that she'd like to start writing again as well, so maybe in another couple years, I'll pick up the dream nothing book and get to read a bit more.

Cheers!