Joubert conference - Phoenix 2017

After a slightly extended vacation due to technical difficulties, I can finally get to writing a post about this summer's JS conference in Phoenix.

This year, we flew out a couple days early, so we wouldn't feel rushed when we got to Phoenix. The flight down was an adventure in itself. Our first flight to Calgary showed me that high altitudes, early mornings, and respiratory issues are not a good combination, but I managed. A brief lay-over in Calgary turned out to be quite fun. Because of accessibility issues, my family and I were able to take a trolley through the airport, which seemed like we were on a tour bus! For the first time ever, I got "randomly selected" and received the full security treatment (yay??). Friendly agents, though. Then, while waiting for our flight to Phoenix, we ended up meeting a younger family from BC who were also heading to the Joubert conference!

We landed in Phoenix that afternoon, and I was blown away by the scenery and how different it was to Ottawa (I'll save all the tourist stuff for another post).

We got to our hotel, The Scottsdale Resort at McCormick Ranch, which was spectacular, and were greeted by friendly faces right away!

That evening, after dinner with our new friends the Willows (the family from BC), we registered for the conference. Again, we were surrounded by good friends who were eager to greet us and congratulate me on becoming the newest board member of the Joubert Foundation (yep, that happened!) And my family got our first official conference photo.

One thing I immediately noticed was how much more social and independent the kids were, especially the older youth. During registration, three teenagers who I've known since the Minneapolis conference weren't the least bit shy about coming up to me and saying hi!

The next day was the first day of the conference. We spent the afternoon shopping to prepare for the rest of the vacation. Unfortunately, I missed the first speaker, one of the teens I mentioned earlier. I did catch up with her and her family later though, and congratulated them. They, in turn, talked me up to a couple other new families which I was grateful for.

Waiting for dinner that evening was a blast, as it meant seeing everyone who had made it in throughout the day.

Seeing all those people was great, but I was most excited to meet and reunite with a couple other affected adults who are pretty good friends, Noldon and Kaci. I had known Noldon since the Chicago conference, and Kaci and I met through the Youth and Adults with JS group I created on Facebook. They had both gotten in touch with me before the conference and it was great to see them and their families!

That night was spent socializing with multiple people in and around the hotel's awesome pool.

Bright and early the next morning, my friend Whitney wanted to get an updated photo of me and her daughter Mackenzie.

 After dinner, the conference hosted a group of researchers who focused on Joubert syndrome and cilia, a major part of the body associated with JS. I was asked to attend as an adult, but was also introduced as a new board member by the Foundation's current and former presidents! It was pretty interesting to learn more about the science and genetics and I liked being able to represent the Foundation and others like myself. In turn, the researchers enjoyed being able to meet affected individuals who could be impacted by their studies.

When the cilia fair ended, I attended the Dad's night. I'm not a father, but a lot of the dads there were around my age and we had things in common. It was a fun night and I received a lot of great compliments!

The following afternoon, I was asked to lead a discussion group for the teens and younger adults similar to the one I did in Chicago. This time was different though. First, I had help. Members of the organizing committee asked Kaci to lead the group alongside me. The attendees really liked hearing about her kids and my inclusion on the board. Also, there was a lot more participation and discussion this time around! Topics like bullying and challenges were thrown around, this time without upset. Some people even brought up questions related to Joubert syndrome, like life expectancy, success rates, and the likelihood of having kids with JS. Gave me some ideas for suggestions for the next conference! We finished the discussion off with several random, fun questions like "favourite colour" and "favourite animal".

Afterwards, many of the teens and younger adults came up to both of us to say thanks, ask other question, and give hugs, handshakes, and high fives. When they all left for their next activity, Kaci and I got a chance to socialize for a bit.

Speaking of socializing, that night there was an adult meet-up at the hotel's bar for adults with JS. I had the idea for it, and the organizing committee okay-ed it. Unfortunately, not many people attended. Some went to the Mom's night instead, others were doing things on their own. Great idea, but I've made suggestions for maybe something a little more formal for next time.

The final day of the conference started with my first board meeting. It felt a bit intimidating at first, but by the end I felt way more enthusiastic and I'm looking forward to contributing to the organization and advocating for others with Joubert syndrome.

The conference ended with the dinner and dance. During the dinner, a video called I Am Joubert, featuring many of the kids and adults (including myself) played. Very well done and great idea!

For my help with the teens and adults, I got a thermos mug and a journal as a thank-you from the organizing committee.

After dinner came the dance and tons of photos.

First up were the official family photos.

Not sure what I'm looking at in these, but it's definitely not the same thing as the rest of my family.

Then came photos with our fellow Canadians.

Martine, the woman beside me in black and white, has been following my blog and other exploits for a while and wanted to get a photo of me and her son, Kayden.

Next up were some photos with fellow affected adults.

Kaci and me. We were both more than a little popular throughout the week, and joked that we felt like celebrities.

The two of us with Meghan, a young woman whose mother was one of the first people I met during my first conference in Minneapolis.

Updated photo with Noldon, who quickly got back to cuttin' a rug on the dance floor.

Was so great to have the opportunity to socialize and become friends with other older adults with Joubert syndrome. Highlight of the conference for sure!

I've written about socializing more with some of the younger parents during the week, so I made it a point to get a few photos with some of them, especially the ones who've been so encouraging with my writing and advocacy.

I may not know much about outfit coordination, but these are still some of my fave photos of the week. Also, Lane (little dude front and centre)!

I was informed this could look like a double date but really, it's just friends.

It also wouldn't be a proper Joubert conference without goofing around with some of the younger folks.

 I met these two cool dudes, Devin and Jaden, along with their parents, at the last conference. Tried to get some photos then but it just wasn't happening. The top photo is the nice one, the bottom's our "fart faces".

More pretty awesome young guys, Sam and Xaviar.

The final photo went to my friend Amanda, who eagerly ran over to get a selfie the second she saw me and Kaci.

I've known Amanda on Facebook for a while, and always enjoy seeing updates on her little girl Karison, who has JS and is super cute! Amanda considered meeting Kaci and me to be one of the highlights of her conference experience, and that is probably one of my favourite photos from the night.

And that was it. The next conference is in Washington DC, 2019 and I've already made tentative plans to see everyone again!


I've decided to do two more posts on Phoenix following this one. One on my many personal thoughts and opinions of the conference, then one for just the general Arizona vacation, so those will be coming very soon.

Until then, cheers!

Countdown to Phoenix

One more week until the Joubert conference in Phoenix and, despite tales of super-hot temperatures, I'm officially excited!

The whole family's going again, and we fly out early, early next Tuesday. First to Calgary, then southward. We're going early and flying out later so we can enjoy both the conference and Arizona itself. Shopping, Mexican food, lounging by the hotel's amazing-looking pool, and photos in Winslow (because we're Eagles fans and also stereotypical tourists) are all on the vacation agenda.

This will be my first conference not speaking, but I'll still have lots to do! I've been asked to lead another discussion group for the older youth in attendance, so that'll be interesting. I've also helped plan a casual meet-up for the adults who are going. Way more than previous conferences, two of whom are already pretty good friends, so this should definitely be a highlight of the week!

Add to that the Facebook friends I finally get to meet in person, and the usual cast of characters, and there'll be no shortage of good times next week.

I've also been presented with a great opportunity this conference that could lead to lots of advocacy, but more on this later.

Like Chicago two years ago, expect a huge post detailing all the great times when I return!

Until then, cheers!

Disability Stuff

The last few weeks have been a pretty mixed bag, disability-wise. A few weeks ago, I met with a caseworker in regards to the disability pension I receive. She was very nice, and gave my father and I some pretty good information, but was pretty upfront when it came to questions about getting more money (not likely going to happen). Not her fault though. At least she was sympathetic to what we were going through.

Later that same week, my parents and I met with a local politician to discuss issues I've been having trying to be more independent, and what might be done on his end to help matters not just for me, but for others. Roughly the same outcome as the caseworker: sympathetic, a few ideas but, ultimately, not much in terms of results. I'm currently drafting a letter to a few other local representatives to see what kind of assistance they could offer.

The next week brought housing headaches. During the meeting the previous week, I had been told about a new housing development I could look into. I did, but their prices were too unrealistic for the money I currently get. This was the straw that broke the camel's back. For the first time in about two years, I lost it. I didn't get angry or freak out like usual, I just sobbed for a good couple minutes. Thankfully there was a comic jam that night, and a mix of friends, book recommendations, and Chinese food put me back in good spirits.

And now comes more job searching. I've written before about how the service provider I'm currently with seems way more proactive, but it's been three years and I'm contemplating a change. Several months ago, I heard from another provider, and they think I would be a good candidate for their employment program. I've contacted their rep and pending a reply, should have things figured out when I return from vacation in a couple weeks.

In the meantime, I just applied to a few part-time jobs and got accepted for a position that could turn into a great advocacy opportunity (can't give specifics just yet), so those are wins!

Cheers 

Accepting Help

When it comes to asking for help, I can be pretty stubborn at times.

Sometimes it's just regular thick-headedness, and sometimes it's about trying to do too much on my own because I think asking for help will make me look weak or less independent.

The stubbornness reached its worst point during one stint of college. Rather than being smart and asking for help when I should have, I took on too much, failed a couple classes, and dug myself into a deeper hole trying to get out of the one I was already in. It ended up costing me money, independence, and a bit of trust from people who cared about me and would've been more than willing to help me if I'd asked them to.

A year of doing next to nothing in a very small town made me see the error of my ways, and when I got accepted into Scriptwriting, I was smart enough to take it slow and ask for help immediately.

Seeking more independence the last couple years through employment, housing, and home care has been exceptionally tough, and there have been plenty of times I've tried to look for solutions on my own (or at least with just my parents), but the assistance I've received from social workers, employment agencies, and others has been a big help and has made things much less stressful.

It might not seem like it at first, but admitting you need help when there's something you can't do doesn't make you look weak, and people won't think less of you for it. In fact, accepting help shows a sense of responsibility and makes you more independent, freeing up time and energy to devote to other things.

Accepting help for yourself also helps others. For one, those around you won't have to worry about whether or not you're in dire straits. Additionally, it shows respect towards the person(s) offering it.

I know first hand what not accepting help can lead to, and I've seen others in the same situation. I don't ever want to go down that road again *knocks on wood*, and I really hope that, in reading this, people will avoid doing the same.

Cheers

The City

Seven years ago tonight, I became a permanent resident of the city of Ottawa. Technically I'd been living in the city for months prior because of college, but on that day it became official!

It was a night that changed my life, for the better, forever. Up until then, I'd been living in a small, rural town called Winchester, about forty minutes outside of Ottawa. I'd lived there since the age of eight. It was a nice place to grow up in but the more time I was spending away at college, the more restless I was getting to leave. The truth is, it may have been a nice place to grow up in, but it wasn't exactly the most ideal place for a physically disabled adult looking for some form of independence.

Moving to Ottawa permanently allowed me to branch out in so many different ways and become more independent almost immediately!

There's a lot about Winchester I look back on fondly, like our house, the pool we had, and the sense of security a small town vibe gave, but some of the experiences I've had here have made it a worthwhile trade-off and I'm still so thankful that my parents decided to make the move.

Just something I wanted to share.

Cheers!

Bookworm

Just a small sample of what I currently own

Just a random, fun Friday post.

I have a confession: I'm a massive bookworm, liking most things, but preferring science fiction, fantasy and, of course, comic books!

As soon as I learned to read, my parents encouraged my love of books, and I've never stopped. I've almost always got a new novel on hand to dive into which, these days, can be very convenient for when things are going slowly with Para Transpo!

In elementary school, when other kids were playing soccer or fooling around on recess equipment, I was often the kid sitting in a corner, reading about Norse mythology, dinosaurs, or some other interesting topic! I read so much that I think some teachers thought I was a little weird. Now, don't take that as something sad. I wasn't doing it because I felt left out or anything, I was a reader by choice. Much easier and safer than running around a baseball diamond or interacting with kids who were bullies, if you ask me.

In my early teens, I discovered comic books and my life was forever changed and improved! The earliest memories I have of doing something on my own involve entering a comic shop and using what allowance money I had saved to purchase the latest issues of Avengers and Thunderbolts!

In high school, I was exposed to the classics. I had an English teacher who noticed my almost stubborn reluctance to read any book that didn't have a dragon, alien, or superbeing in it so, one day, she lent me a stack of books that included titles like 1984, War of the Worlds, and The Hobbit. Still within my wheelhouse, but a little more advanced than the latest installment of Animorphs.

My love of reading soon led to career ideas. I knew for a while that I wanted to do something with comic books, so this took me down several paths, including animation and public relations, before finally realising my passion for writing and applying to Scriptwriting! That led to quite a few successes including social ones, but never really produced anything financially viable, so comics were relegated to the status of a really awesome hobby and interest while I pursued advocacy. Doesn't mean I'm any less of a book nerd, though!

In an age of Netflix, the Internet, iPads and other distractions, it can be way too easy for people of all ages to get hooked on "screens." It can also be too easy for people to adopt the "wildhood" mentality as a remedy, and become very outdoorsy. While both screentime and wildhoods have their advantages, why not pick up a good old fashioned, paper-and-ink book and let your mind wander for a while. It might just lead to a passion or even a career.

Cheers!

CHEO, OCTC, & Me

Today is the CHEO (Children's Hospital of Eastern Ontario) Telethon. I've already made my yearly donation and now I want to share why it's so important for me to do that.

Growing up, I spent a lot of time at both CHEO and OCTC (Ottawa Children's Treatment Centre), which recently merged. Between the two places, I had at least five regular doctors and a whole host of others who saw me over the course of twelve years.  Lots of routine appointments and a few scary surgeries and hospital stays, but some good times too.

OCTC was where my parents first learned about both Tae E Lee's Taekwondo and Easter Seals Camp Merrywood, still two of the best experiences I've ever had! It was also through the Treatment Centre's Teens First program that I got to meet and befriend many other youth with physical disabilities.

When I hit my late teens and my time at these institutions was nearing an end, it was a bittersweet experience. On the plus side, it was a sign that I was reaching adulthood. On the downside, the transition, in some cases, left much to be desired. Those few issues resolved themselves though, and I moved into adult healthcare. However, it turned out that neither CHEO or OCTC were done with me.

As I've written about a few times, I was in the middle of a routine appointment with my family doctor in 2011, when she brought up Joubert syndrome. Genetic testing was recommended, and that brought me right back to CHEO, a good eight years after my last appointment, to their Genetics clinic. And, we know how that turned out (new diagnosis, rare disorder, speaking/writing, tons of friends, etc.)!

My return to OCTC came a little later. In a moment of combined boredom and ambition during the winter of 2013, I decided to volunteer with OCTC's Foundation office, doing fundraising, data entry, research, and other small jobs. I had originally only planned on doing it for a short while, but I liked it so much I kept at it for the next three years!

I've been fortunate enough to be able to finds different ways to give back to these institutions, without whom I literally would not be alive today, and will continue to do so in the future.

Cheers!