2015: I Was All Over The Place

Well, another year has come and gone!

2015 started off pretty uneventful then kicked into overdrive once the good weather came.

Winter and the majority of Spring were a mixed bag of odds and ends. In January, I had a Respiratory appointment that went well enough that the time between my appointments got pushed to nine months instead of six! I wrote quite a bit more on here, including this post which tons of people shared, and this one which is still one of my favourites! Still no work, but had my first experience with actually having to turn down a job (transportation issues).

As soon as the snow melted, I was out and about and making travel plans!

Early in May, I attended the Toronto Comics Art Fest for the third year in a row.

Took the train, got to my hotel, and had another great solo weekend!

I turned thirty the end of May. Was kind of a big deal.

The highest point of the year was definitely the Joubert conference in Chicago in July. I've already written about it at length, so this time I'll do the short version. Gave another successful presentation, got to see some good friends again, made a lot of new friends (including a few other adults with JS!), committed to writing a book (!), and toured a very nice city.

Family photo by Jenni Swenson

 

 

Great group of people!

I made the most of a warm Fall with a trip to Nova Scotia to visit my grandmother.

Where I ate this beauty!

And I also put in some time at the family's cabin.

Last but not least for the year, I gave another presentation. This time, I spoke to a class of Social Work students about growing up with a disability, getting diagnosed with Joubert syndrome as an adult, and how my family's dealt with all of it. Went really well.

So, that's about it. Overall, a pretty decent twelve months.

Already planning things for 2016, but that's for another post.


Cheers, and Happy New Year!




Fiction

Everyone who reads this blog knows about the number of disability-related things I've written or am currently in the process of writing. But, what some people may not know is that I started out wanting to write fiction.

In 2009, I went back to college for Scriptwriting. I'd always wanted to write my own comic book, so when I learnt that many comic book writers used scripts, it seemed like a natural fit.

The program included screenwriting (movies), writing for broadcast (TV), and writing for the stage (plays), as well as editing and some ad writing.

Over the course of the program, I had three major writing projects: an original screenplay, a pitch for an original TV series, and a one-act play.

The screenplay, which I titled  Roll With The Punches, was about the relationship between a soldier, his wife, and their physically disabled, wheelchair-bound son, who the soldier has never really been comfortable around. The soldier gets his legs blown off overseas and returns in a wheelchair. The family struggles to deal with the soldier's new lack of independence while the son plans on moving away for college or university after high school.  Long story short, there's fighting, family drama, and eventually, the father and son bond.

Everyone liked the idea, but it was really hard to write, and it didn't really end up being what I completely wanted it to be when I handed it in. I've thought about finishing it. Some day!

Next was the TV series. I chose to base my original series on cryptozoology (the study of Bigfoot, the Jersey Devil, and other undiscovered creatures) and called it Cryptic.

Originally, Cryptic was going to be about two agents, one of whom was a Greek siren, solving crimes and mysteries and other supernatural things. So, literally X-files with less aliens and more monsters. After coming up with some less-ripped-off ideas, I decided to make the show about a college Biology student, Christopher Banes, who is really into cryptozoology. One of Banes' professors has actually been studying these creatures for some time and takes Banes under his wing. With some assistance from one of the professor's former students and a friend/girlfriend of Christopher's, they protect all sorts of things, from Bigfoot, sea serpents, to animals in an ice age "lost world" from developers, hunters, and other villains.

Once these projects were done, the class got to pitch them to networks and producers in Toronto who, in turn, gave us advice. It was a fun trip and people really liked my ideas!

The following year, I went back and took the playwriting classes (I had gone on a reduced course load, so a 1-year program became 2). Here, we were asked to write a one-act play that would be partially presented in a dramatic reading later in the year.

My play centered on the owner of a comic book shop (because I obviously couldn't go without writing SOMETHING about comics!) The owner's shop is in danger of being bought out by an agent who think comics are childish. The agent blackmails the owner into signing over the store by threatening to go public with the fact that the owner was a former superhero, The Red Knight. Eventually, the store's one young employee, who is creating his own violent comic the owner dislikes, decides to make an updated version of the owner's former heroic identity. This, coupled with the addition of a new employee, sound like they'll be enough to save the store.

This was another fun one to work on, and seeing part of it performed by actors was really cool! After the program, I added to the play and mailed it around to a few people for feedback. I never heard much back, but it was worth a shot.

And last but not least was what I chose Scriptwriting for in the first place: a comic book. Even before the end of my first year, I had started adapting my Cryptid TV idea into a comic book. I got rid of most of the humans save for Banes, brought back the Greek siren, who I made a shape shifter), and added in a white Bigfoot with psychic abilities (because why not, right?) Together, they would protect a hidden, world-wide civilization of cryptids from a Dr. Moreau-type scientist.

Originally, I tried to self-publish and looked for artists. Some were good, some not so much. After narrowing down my choices, I asked the potential artists to draw one of my characters. It was so cool to see the results, and one artist even went further and drew my three heroes together!

Credit to Gerar Gonzalez

 Other things came up and self-publishing didn't work out, so I eventually pitched Cryptic to a couple guys here in Ottawa. They liked the overall idea, but felt the story itself needed work. I kept at it, tweaking things and creating more stories for a couple of years until I just sort of hit a wall. That's when I started writing the transitioning articles.

Comics, movies, and plays were really fun to write, but I've realised recently there's a bit more of a demand for the articles and book. Right now, the fiction stuff is just a cool hobby and something fun to think about when I'm drawing a blank with the disability stuff, but who knows about the future. Maybe I'll up and randomly create a my own disabled superhero someday!

Cheers!

Merry Christmas!

Wishing everyone a Merry Christmas and Happy Holidays!

Changing Faces

Pictured: An adult with a disability

I've got a bit of a bone to pick with organizations that provide care for people with disabilities. Before I get going, I want to say that none of this is personal to any specific group or person, just a general beef.

Ok, here goes. I'm back in the process of looking for some help with personal care, to take some of the "weight" from my parents and give myself a little independence in the process. So, I've been on several websites by now, and here's my beef: Why, on any of these provider's websites, are there never any photos of clients who look roughly like me, disability-wise.

Like one website says it provides care to people of different ages and with various impairments, yet all of the photos show senior citizens. This is the same with other websites as well. Then there are sites where the photos are of mainly people who are more severely disabled.

I get that my disability is "invisible", and that the challenges faced by people within these demographics, and the modes of assistance they can require are easier to showcase through photos, but I just think it would be nice to see a little more variety once in a while. I mean, and no offense to anyone, but sometimes it can be a little disheartening to click on a website promoting assistance for disabled adults, and see nothing but people who are 65 years of age and older, when you're only 30.

Just sort of irksome.

Guess I shouldn't complain. I mean, better this than nothing at all, right?

Cheers!

Outrunning Old Man Winter

Jerk

It's December, and he's gonna come eventually. It's inevitable. But for today, Ottawa got a reprieve from Old Man Winter. 9 degrees Celsius, on December 5th, in Canada!

I seized the opportunity and, after haircut, went straight downtown for the afternoon. Bought a ton of comics (of course), tried a new sandwich place for lunch, which was pretty decent, and spent most of the rest of the afternoon at a Second Cup, reading with a chai latte!

These should hold me over for, oh, two weeks??

Cheers!

The Book II: Abridged Intro part 2 - What It's All About

This part's taken longer than I thought it would. I guess that's what happens when you've chosen to write something a lot longer than a blog post or page-and-a-half article.

Anyway, here's where I lay out some of the ideas of what I want the book to be about and the areas I want to focus on. For now, these are all rough ideas. I might add or scrap some things as I get going.

I plan on writing about transitioning to adulthood with a disability, with the hook being that it's from the perspective of someone who's been there (or, in some cases, still is there). But, I want to focus more on how to deal with the smaller, more universal things that come with having a disability. There are tons of resources out there related to disability-centric topics like healthcare, finances, and education, but the take-away from those are usually dependant on the individual and where they live.

My plan is to write about things that can apply to anyone with a disability going into adulthood, like talking to people about your disability, getting out into the community (and/or the world at large) any way possible, and being comfortable in your own skin. And again, this is all from someone who's been there.

Right now, I think I want to separate things into three broad categories: 1) Getting Out, 2) Dealing with Others, and 3) Accepting Yourself.

Getting Out will be about, well, getting out. Being independent in the world with a disability. It could be some kind of post-secondary experience like college, university, or another kind of program. Working or volunteering. Travelling abroad. Just going for a coffee. Whatever. It's all about being able to do things on your own.

Dealing with Others would be topics related to how to deal with other people in your life, especially when it comes to your disability. You're probably going to be with them for the long haul for one reason or another, so how do you handle being with family while still trying to be as independent as possible? What's the best way to talk to others about your disability? In this section, I also plan to write about bullying and how to advocate for yourself when it comes to doctors and healthcare.

 And last but not least, Accepting Yourself. This is a more personal area, devoted to ways to help those with disabilities feel better about themselves. It may be a touchy area, but I've definitely been there and I'm sure others have as well. For now, topics here will include feeling comfortable with your disability and staying positive, among other things.

And that's the latest. Now, here's where I could use some help. If anyone has any comments, questions, or ideas, I'd very much appreciate them. Even criticisms, but no haters please.

Cheers!

The Book II: Abridged Intro part 1 - How it All Started

Because I recently realized a chapter in a book needs to be a lot longer than a blog post, I'm going to break up the introduction I said I'd post into two abridged parts. Plus, writing an abridged version now might make it a lot easier when I start to write the full thing.

*Note: This is just a rough version for the blog, and not exactly what I'm putting in the book.


The first part is basically about how I got to this point in regards to speaking, writing, and advocacy.

It started in 2003 when I was Youth Representative for Easter Seals' district council, North Dundas. They had asked me to be part of The Leaders of Tomorrow, a group of teens and young adults who would speak about disability and accessibility awareness on Easter Seals' behalf.

I was part of the first two incarnations of the Leaders of Tomorrow, and did several speaking engagements during that time. Highlights include being asked to speak to an accessibility committee when my town's hospital was being redone and updated, promoting Easter Seals in a commercial that played on the Jumbo-tron at an Ottawa 67's hockey game, and speaking to classes at high schools and universities.

Shortly after my run with the second group of Leaders ended, I took time off from speaking because of college. I did the odd engagement, like speaking to campers at Camp Merrywood, but that was about it. I did however, write an article about transitioning to adulthood with a disability for a website called Door2Adulthood. The site took stories and testimonials from disabled youth across Ontario and it was a fun experience.

After my most recent tenure at college a few years ago, I wasn't really doing anything and was getting kind of bored. Out of that boredom came the articles I wrote for the Support for Special Needs website. Topics included post-secondary education, looking for housing, and going into adult healthcare. They were really well-received, and it was a great motivator knowing that people were getting something from what I was doing.

Next came the Joubert conference in Minneapolis. During one small Q&A session with a few of the doctors who were in attendance, I found that I had nothing to ask and not much to say. So with nothing better to add, I talked about speaking and writing. Several people, including another adult with Joubert, thought it was great that I was doing this and suggested maybe going further with it. Several more people at the conference expressed the same opinion after I gave a presentation about my life.

After the conference, I was mentioned in a couple of blogs. This inspired me to finally create a blog of my own, to share more about my life and further my passion for disability/accessibility awareness.

Writing in the blog inspired me to get back into advocacy and, with help, I set up to opportunities. First, I attended a conference for the Canadian Organization for Rare Disorders (CORD), where I met others in the rare disease community and spoke to several politicians. Second, I spoke to a parent group about growing up and being diagnosed with Joubert syndrome and the effect it's had on my family.

And that brings us to the Joubert syndrome conference in Chicago, where I was asked to speak again and where I got the idea to write a book.

Enough Already! *Rant-ish post*

Yesterday, I was unfortunate enough to have clicked on an article about Donald Trump making fun of a physically disabled reporter. Honestly, I saw "Trump" and "disability" in a blurb together and clicked it, holding onto hope that it might have been something positive. Alas, I was very wrong.

I'm not going to go into detail about the incident because A) I didn't really read much about it, and B) I think that sharing even the slightest detail does a disservice to the reporter and gives Trump too much added attention. Bottom line: it was wrong!

I'm not political, and I'll never condemn someone for their own personal leanings, but I think we can all agree that the leaders and potential leaders of our world need to have more class than what was displayed in this situation.

Seriously, if an average person on the street displayed that kind of lack of respect, they'd either be severely chastised (best case) or have the snot kicked out of them (worst case).

In an age where we're so focused on acceptance, tolerance, and fair play, we need to stop making excuses for certain people and call them for what they are, bullies.

Maybe then we'll all get along that much better.


Cheers!

The Book - This Is Seriously Happening Now

I've been sitting on this for a couple months now, and posted about it on here more than once, and now I think it's finally time to start writing this book!

It's going to be about transitioning to adulthood with a disability, but focusing more on the "softer" side of things. This means that I've decided not to write a lot about healthcare, pensions, and other things that would be technical or really person or location-specific.

Instead, I'm going to write about topics that are kind of more universal. Some of the things I'm including for sure are subjects I've already written about on here, like bullying, getting out on your own (work, volunteering, or whatever) and feeling comfortable with your disability. I'm just maybe going to expand on them a bit.

I'm mulling over other topics like dealing with family, using social media, and possibly something about being diagnosed at an older age. Probably going to post some of these on here first to see what people think.

I'm planning on posting a sample intro on here hopefully by the end of the month, and as usual I'll post updates as things happen.

And now I've actually committed to this. Gotta say, I'm nervous but super-excited to start writing!

Cheers

No Motivation

 

Having one of those days where I just have zero motivation to do anything productive. Maybe it's the weather. Or, since tomorrow's Halloween, maybe a gremlin's messing with me. Is it weird that I hope it's the latter?

Cheers until my brain kicks back into gear!

Carleton U Speech and Considering More Professionalism

This Tuesday, I spoke to a group of Social Work students at Carleton University here in Ottawa as part of a panel about family and disability. The panel consisted of me and an older man who had become a quadriplegic after a diving accident at the age of 19. Between him and the professor, I think I learnt as much as the students did!

For my part, I spoke about living with a disability, focusing on family, being independent, and Joubert syndrome. People were very interested to learn about Joubert, and asked several good questions about getting diagnosed later and what my family members and I thought of it.

Overall, everything went well. Though, I forgot to mention the blog when I had the opportunity. Guess I've got to work on self-promotion a bit.

After the class, the professor asked me if I wanted a letter, for proof or a keep-sake. At the time I declined, feeling that it would be too forward to ask for something. Later though, I sent him an email asking for one at his convenience. I had decided it would seem more professional to have something like that.

Speaking of professionalism, this speaking opportunity has convinced me that I need to step-up my game a bit. When I get the letter, I'm going to combine it with the articles I've written, some of my longer blog posts (the ones about bullying, words, the conferences, etc.), and maybe a résumé for speaking and writing into a portfolio of sorts. I'm also going to start looking for more paid opportunities.

Cheers!

What's It Mean to Me?

I often hear the question "What's it mean to you?" posed or asked in relation to different aspects of Joubert syndrome. People are curious about how topics like genetics, getting a diagnosis, and even social media apply to you personally. I've even asked people about genetics a couple times. Well, I was reading a couple of posts on a Joubert Facebook group the last couple days that sort of relate to the subject, and I thought I'd write about what it all means to me.

I can't comment too much about genetics because, to be honest, I don't know all that much about the subject, so I'll skip right ahead to what I thought about getting diagnosed.

As I've mentioned before, I was diagnosed with Joubert syndrome relatively recently (a few weeks shy of my 26th birthday). When I got home after meeting with a geneticist and getting the formal JS diagnosis, my mother asked me how I felt about it. I said I felt that "Joubert syndrome" was just a name. Now, I think my mother was looking for a more profound answer, but the truth is that's what it was at the time, just a name. I didn't wake up the next morning a different person, and my life up until that day wasn't magically erased because of a diagnosis. Not to make light of anything, but they could have called it Scott MacLellan syndrome for all I cared at the time.

Beyond seeing a couple new doctors, Joubert syndrome never really meant anything to me until the conference in Minneapolis, when I actually got to meet others with JS in person for the first time. And now, as I continue to meet and interact with more people, especially other adults with the syndrome, Joubert syndrome means a lot more.

And speaking of meeting and interacting with people, there are a lot of posts and articles out there about what social media sites like Facebook mean to special needs parents and/or families, but not much about what they mean to the people with special needs themselves. Now, I'll probably expand on this in another post (in fact, I think I will) but for now I'll say that for the past four years, social media has been a lifeline. I've met so many great people, from literally all over the world. Without social media, specifically Facebook, I would have never met anyone else with Joubert my age. And, I wouldn't be writing this post, allowing me to share my thoughts and opinions on subjects like this one.

So that, in a nutshell, is what it all means to me.

Cheers!

(Probably) One Last Big Adventure

Yesterday was my usual monthly afternoon/night out (not that that's the only time I get out) for dinner, drawing, and comics with the Ottawa Comix Jam.

Since the weather this time next month most likely won't be optimal for walking around, yesterday was probably my last big excursion to downtown Ottawa for the year, too.

This time I chose to do a bit of exploring, going past one of my usual stops to see what new places I could find.

On my little journey, I first found a new book store where I actually got some early Christmas shopping done. Yes, me, the person who usually draws a blank on what to get people until mid-December, then frantically begs to get driven around to various stores with only a week to spare, started shopping in September!

I also went to a really nice British-style pub for lunch, which ended up being a great place to get some writing done.

After that, it was the same-old usual of new comics, a chai latte, then dinner, drawing, and book/TV recommendations at the Jam.

I'm still going to get downtown as much as possible until the (arrgh!) snow comes but as I said, this was my last big push and it was a pretty good one.

Cheers!

Stuff Happening

Couple new developments in work, writing, and speaking worth sharing.

I just applied to a couple jobs, the most interesting being one within one of Canada's premiere TV networks. It's an Admin and Communications position and is only temporary, which suits me just fine. If I get the job and am really, really lucky, it could also be a good step into some Scriptwriting work. Maybe. We'll see.

The book is still a thing that will eventually happen. It's still going to be about transitioning to adulthood with a disability, but now I'm starting to think of leaving a lot of the bigger things like housing, adult healthcare, subsidized income, etc. out almost entirely since those are all pretty region/person specific. Focus on general, all-encompassing things like getting out on your own (school, work, whatever), being social, coping with your own disability, and so on. At least, that's the plan for now. 

Finally, the speaking opportunity I wrote about earlier is now formally scheduled for the 20th of October and the class is called Disability & Relationships. Starting to think of things to say, and it should be interesting.

That's all for now. Cheers!

Speaking Again

Good news!

I've got a speaking opportunity getting lined up for some time in November. It will be as part of a panel for a class at one of the local universities devoted to family and disability. There may be some other speaking opportunities to come out of it too, if I'm lucky!

I've spoken to this particular class a couple times before, but on behalf of Easter Seals. This time is 100 per cent me, so it should be interesting.

Will post updates when they happen.

Cheers!

Down East

I got back Sunday from a trip to Dartmouth, Nova Scotia visiting my Nanny Perkins (yes, I still call my grandmother Nanny). I try and get down there once a year for a couple of days. It's a change of scenery, something to do, and my Nanny likes the company.

I left super-early Thursday morning (4:30 am!) to catch a 6:30 flight. It was so early that I actually got to see the guy who delivers our paper! Anyway, I got to the airport, through security, had breakfast (thankful Tim Horton's opens at 5:00), and boarded my plane.

A couple helpful tips for flying with a disability: I always make sure to use the facilities (you know what I mean) well before boarding and I take a change of clothes in my carry-on just in case. I also always have a flight attendant meet me during pre-boarding. I can get on the plane itself, but I usually find I need help with the ramp.

Anyway, the flight was good, saw the sunrise somewhere above Montreal which was awesome, and I met my Nanny at the Halifax airport. After spending the day relaxing (sleeping) after that early morning, we went to a local restaurant for fried clams, one of my must-haves when I'm in Nova Scotia!

Not the actual meal, but close enough.

 The next day it seemed like things just couldn't go our way. I had brought a tablet from home, hoping to show my Nanny my photos and blog posts from Chicago, so we went to McDonalds so I could access their Wi-Fi but it was down. Then we tried a Tim Horton's, and theirs threw me off. At least we were smart enough to get some food first. Later we went out to get lobster rolls (it was recommended that I try one), but those sucked. However, the day's mishaps were soon forgotten thanks to a simple, yet delicious, salami and cheese sub.

That's right, the high point of an entire day for me was a sandwich. But this isn't an ordinary sub. This salami and cheese sub, with a large chocolate milk to round out the meal, is one of my ultimate guilty pleasure meals. Seriously, I can only get this once a year and it's definitely worth the wait!

Cheesy, meaty, greasy goodness!

Yep, I'm actually posting this photo.

Afterwards, I ventured down to my Nanny's basement, which has always been my favourite part of the house, and took photos of a lot of stuff. There were my mother's vinyl records, old books, and this thing:

Slide-viewer?

Some of my Papa Perkins things from the navy.

Emblems from some of the ships he was on

Caricature of him as a drill sergeant. One of my favourites.

And plenty of old photos, many of me.



Baby photos



Parents and I in Old West costumes.

High school grad photo

My Papa Perkins, gone 20 years this coming April

Saturday, we took the ferry from Dartmouth to Halifax. I had only taken it once before last summer, and it was pretty easy to do. Sort of like taking a bus! My first stop in Halifax, same as always, was Strange Adventures comic shop. My Nanny and I then walked around a little and stopped for lunch.

Before leaving the next day, I wanted to get one more photo. When I was little, my Papa painted my name on a rock on their property. From then on it's been Scott's Rock.

Paint's still there, twenty-some years later!

I flew back later that evening, seeing the sunset from the plane. Great trip.

Cheers!

Putting the "Social" in Social Media

About a year ago I created a Facebook group for youth and adults with Joubert syndrome. It started as an idea I had at the Joubert conference in 2013. I brought it up in a session I was invited to about issues related to teenagers with Joubert. Parents were talking about possible ways to get their kids to be a little more social, and I thought a Facebook group would be a good way for people to stay in touch. There are Joubert-related pages and groups for parents and family members, why not the kids and adults themselves, right?

The parents all thought it was a good idea, and we came up with ways to make it as safe and friendly as possible. I was asked to moderate it, it would be a closed group to avoid spam and other nastiness, by invite only and, as my suggestion, "No parents allowed" to ensure a more social environment.

The group started off relatively small with just me, about a half-dozen youth from the conference, and a couple adults I had met previously. People introduced themselves and talked a little, but mostly posted photos. Eventually, I started getting requests from more people, and other members even started adding people they knew.

Flash forward to today. The conference in Chicago really re-invigorated the Youth and Adults group. New people were added and photos from the conference have been uploaded and liked. Everyone misses each other already, and I've started posting a weekly question (just fun, random, get-to-know-you things like favourite movie, animal, vacation etc.) which, so far, always seems to generate good conversations. It's really become like a community and everyone gets along. People are becoming friends outside of the group, and I just saw one person participate for the first time since being added when I created the group, which is awesome!

I hope this momentum keeps up and, if everything works out right, everyone who gets along in the group can get along in person at the next conference!


Cheers!

If The Shoe Fits...

The other night was another attempt to find myself a new pair of shoes, which for me ranks somewhere just above "dental appointment" on the list of things I enjoy doing.

My feet are flat and have a tendency curve outwards like a "V", rather than staying straight-forward, so I've had to wear orthotics or AFO's (ankle foot orthotics) or inserts as I call them now, since I was little. At first they were ankle-high, but the ones I've had from about high school until now go up to just over my heel.

 

My feet are also fairly small for my age. I'm thirty and still often have to shop in the kid's section for footwear, although I did finally outgrow a couple stores like Kiddie Cobbler this year. (Yay!?!)

All of this combined makes shoe shopping a pain. I need something that's wide enough for the inserts, high enough for support, dressy enough to be multi-purpose (plain black is the ideal), and something that might have to be from a kid's store. So, basically your standard needle-in-a-haystack.

I've tried Nike, Converse, Vans, and other brands but none seem to fit. At best, I find something that meets one or two of those above requirements. I've heard a lot of good things about New Balance from parents of kids with Joubert syndrome though, so I guess that's the next brand I look into.

Wish me luck!

So, I'm Going To Write A Book

Yep, it's true! I mentioned this in my first post about Chicago, but for anyone who may have missed it, I've decided to write a book.

The idea was brought up by a couple people at the conference, and it seemed like a good idea so I'm running with it. A couple people are already very interested!

It took me a while to come up with an idea. The obvious choice would've been a straightforward biography but, between articles and some of my presentations, I've kind of done that already. Then I thought about writing about getting diagnosed with Joubert syndrome at 26, but I've never really found that to be that big of a deal.

What I've finally decided on (for now, at least) is to expand some of my blog posts and articles, especially the transitioning-type ones, into book-form (is that even a term?) I want to focus on the social aspects of having a disability and/or rare disorder, and write about things that experts may not necessarily talk about (not that I'm hating on experts, relating the experience of someone who's been there).

Example, there's a lot of information out there about sources of financial assistance for people with disabilities (Ontario Disability Support Program, Social Security, etc.) and how to get them, but I doubt they'd be helpful explaining what it is like to extra money at 18, go a little wild buying comic books and DVDs, then realise you've got to pay for college (true story, but it worked out okay!)

The same goes for social topics such as meeting others like yourself, bullying, or feeling comfortable and accepting your own disability. I'm sure there have been studies and articles written about all of these, but it's always nice for people to see a personal, light-hearted perspective.

Anyway, that's what I'm thinking so far. I'm sure some things will change, but looks like a good idea. If anyone ever has any input/feedback they'd like to offer, it'd be more than welcome!

Kind of scared to finally be writing something like this, but I'm going for it and I know I'll have tons of encouragement.

Will keep everyone updated. Cheers!

Joubert Conference 2015 part 2: Thanks and Appreciation

No, thank YOU!

And here's part 2 of my Chicago post! In part 1, I wrote at length about the people I met, places I went to, and stuff I did. Now, I want to give my personal two cents about the whole event.

This post could get sappy. You've been warned.

First off, the whole family found it a fun and eye-opening experience. My mother couldn't get over the similarities between me and some of the other kids. It actually got to a point the first night where she could barely even look at me without starting to cry. But, she pulled it together and was very proud of me :) The last night of the conference, several other mothers complimented her on parenting after seeing the two of us together, which I thought was just the greatest!

My sister had a good time, also. She really contributed to the Q&A after my presentation and it was honestly very touching to hear her be so honest and up-front when asked about being a sister to me and coping with the disability. She really hit it off with some of the other siblings and I think gave a few of them some much-appreciated advice and support. A couple parents really took to her as well.

As for me, well, it was awesome! The amount of amazing people I met on just the first day was unbelievable! I made a comment in my last post about being overwhelmed, and it's the truth. I've gotten tons of comments and compliments over the years from parents, doctors, teachers, and other adults and professionals, but to see and hear from kids and other adults who not only have the same rare syndrome as I do, but are also so similar to me in so many ways, and were eager to share their experiences? Like I said, overwhelming.

It was also great to see so many of the kids, especially the older ones, interacting and having fun together! It was just something I noticed this time, compared to Minneapolis, and people were greatful for me pointing it out.

The organizing committee labeled the Chicago conference the PosABILITIES Project to showcase what kids with Joubert syndrome can do, as opposed to what limits them. For what it's worth, after everything I saw and experienced, the committee couldn't have picked a more appropriate title.

Anyway, that's my two cents about Chicago. Thanks to everyone who made it great: the Foundation for giving me yet another opportunity to share my story, my family for coming with me and sharing in the experience and, because I obviously haven't said this enough already, the parents, other adults and kids for listening, chatting, and being awesome.

Phoenix 2017!


Cheers!

Joubert Conference 2015 part 1: Old Friends, New Friends, Other Adults, and Pizza

The Foundation's new logo. Very nice!

Well, there's been a break in the humidity, so as promised, here's my post about the Chicago conference. I've decided to do this in two parts. This post will be mainly about the conference itself, some of the people, and touring Chicago.

Unlike the post about the 2013 conference, this one contains a lot more names of people because, well, I actually knew people this time and they're awesome!


The conference was four days, from Wednesday July 22nd to Saturday the 25th. This time, my whole family (Dad, Mom, sister Courtney, and me) attended. It was my mom and sister's first conference.

We arrived in Chicago around noon on the Wednesday. As my Dad was checking us in, the rest of us started seeing a few other kids with Joubert syndrome. Right away, my mother found it a little overwhelming to notice such similarities between them and me.

And speaking of seeing kids with Joubert, I barely had my suitcase out of the car before one of the families my Dad and I met in 2013 pulled up next to us, and their fifteen year-old daughter Alden ran over to me excited and said hi! Both our families entered the hotel together, with Alden walking right next to me. She was in a pretty close orbit for most of the first night, and she and her mother would later ask me about going to college and using assistive devices, which I thought was great! It was routine to get a "Hi Scott!" at breakfast every morning, too.

Conference buddies.

Once we unpacked, we started meeting people. It was so great to see so many familiar faces again or for the first time!

The conference got underway later that afternoon, and I was the first speaker of the week. I gave much the same presentation as I did in Minneapolis in 2013 which, by the way, I'll post as soon as it's uploaded. I was actually more nervous this time! But, this time I wasn't alone. Speaking right after me was Noldon Starks, another adult with Joubert syndrome. Noldon is from Ohio and spoke about his faith, writing, and attending college. Really nice guy, too.

After our presentations, our families joined us on stage for a Q&A. Some very great questions and comments! Listening to Noldon and his parents, I couldn't hep but be surprised by how similar they sounded to me and my family!

After the Q&A, we all got many more questions, comments, and compliments. There were so many people! I had a young guy, Devin, who I met through his mom and a Facebook group I started for youth and adults with Joubert, come up and talk to me about some of the technology he uses for help in school. I also met two more adults with Joubert syndrome; Alex from Florida, and Erika from right here in Canada. They introduced themselves and talked to me about college and volunteering. Was so cool to meet other adults with this syndrome! On the way out, I was introduced to Sean, a pretty cool kid whose family I met during the conference in Minneapolis. Sean's mom had told him all about me, and he was excited that I liked comic books and had gone to a summer camp like he's going to now!

All of this was so overwhelming (in a good way) that I kind of had a moment before dinner.

That night was time to be social. I had plenty more kids and their parents approach me, but also spent some time socializing with a few parents who were close to my age. One father, who I'd met through Facebook, thought so highly of me that he gave me a couple superhero-themed t-shirts!

This one was the coolest.

Thursday was a pretty eventful day. During the morning/early afternoon, I lead a group discussion for the teenagers and other adults with Joubert syndrome. I got the idea during the previous conference when several of the older kids seemed very eager to approach me and be sociable independently from their parents. A lot of people showed up and participated, despite a few negative reactions to topics like bullying and challenges (everyone was okay afterwards, though). People talked about what they liked about school and/or what they want to do afterwards, favourite pastimes, what makes them feel independent, and their successes! There was even discussion about what Joubert syndrome is, definition-wise. (I even learned a few things from this!)

Afterwards, the room we were in was set up so we could have lunch together. About a handful of people (mostly the other adults and I) stayed, and it was a fun time talking about "normal" things, like movies, books, and amusement parks!

Later that afternoon came the only low point of the conference. I was attending a session for teens and adults that was recommended to me. The woman running it said she worked with other adults and I had thought it would cover things like self-advocacy, so I decided to check it out. Long story short, the subject matter was something I had learned long ago so another of the adults and I walked out. In hindsight, that may have been rude, but whatever. I learnt later that others had left (some frustrated) and that that particular session wouldn't be done again.

For dinner, my family and I celebrated my mother's birthday by having Chicago-style deep-dish pizza for the first time. It was really good, but I could barely make it through one slice!

That's just a medium!

Later that night, I spent some time chatting with two of the younger fathers, who were also board members. They were interested in hearing about the session I lead that day, and liked hearing input from an adult with Joubert. In turn, they made an offer for me to join the board (I turned it down due to other things going on) and suggested I take the topics from my blog, presentation, and the teen/adult discussion and write a book. So, yeah, I'm going to write a book! Anyway, it was fun to talk, and hear, about the conference from a couple different angles and offer my two cents, and both guys liked superhero movies, so of course that was cool.

Friday morning was a time for photos. First we got a family photo, then my mother noticed a box of goofy clothes and accessories for people to dress up in for photo booth pictures (which was a great idea!). The day before, one of the older teenagers who I had met in Minneapolis tried to get me to wear some of the stuff. She saw my mother trying to get me to put stuff on, and I sort of got tag teamed.

My Dad and I wearing tiny hats.

My mother (boa) and sister (glasses), with Alyshia (the girl I mentioned above).

That afternoon, we went to Wrigley Field for a Chicago Cubs game. I'm not a baseball fan, but the stadium itself and the atmosphere made it fun!



We went to downtown Chicago for most of the last day and played tourist. First, we walked around Millennium Park and took photos at The Bean.

Inside. Really cool!

After that, we saw some neat sculptures and walk past a fountain and a splash pad (which were great because it was hotter than Hell that day!)

Melting!

We ended the day at Navy Pier and a river tour that took us through the city by boat to exhibit Chicago's architecture. We saw Sears Tower, the location of the Chicago fire, a building that looked like it was from The Jetsons, and several movie locations including where parts of the last few Batman movies were filmed.

Our tour guide, JJ, was really good and really funny.

Filming location. The Batmobile drove right through there!

We took the L Train back to the hotel. The following photo is being posted as proof that I DO still take photos with my mother.

Even when she thinks I don't :)

We made it back just in time for the closing dinner and dance. During dinner, I was given a travel mug and notepads with the Joubert syndrome Foundation's new logo as a thank-you for speaking. It was also announced that the next conference will be in 2017 in Phoenix, Arizona and we're already planning for it!

Before the dinner, I had arranged to get photos taken with some of the other adults when we were done eating.

I've gotten so many amazing compliments and such enthusiasm from just this one photo, it's awesome!

It was absolutely a highlight of the week to meet these three, especially with one of them being another Canadian.

Some of us went back in and danced. Between the younger kids wanting to dance with us and people wanting photos, we were all quite popular that night.

One of several photos of Noldon and me, taken by one of the parents.

Me and Tonya, mother of a little guy with JS, who I finally got to meet in person.

Me and my buddy Mia, who hopes to go to college one day!

Mia's mom Beth, another mom I finally got to meet in person.

And then it was over. We left Sunday morning, but not before getting one last photo op in.

This is me with Mackenzie Steele. I met Mackenzie's mom Whitney in 2013, and have been in touch with her since. I've seen many awesome and inspirational photos and videos of Mackenzie, and it was great to finally get to meet her in person.

The conference was so much fun, and I got so much out of it. I have way too much praise to fit here, so I will save my further impressions for a follow-up post!

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*All photos used with permission
** If you would like to know more about Joubert syndrome, visit their website at http://www.jsrdf.org/

Cheers!