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!