2019 JS Board Retreat

This past weekend was the Joubert Foundation’s annual Board retreat, held this year in Chicago, at the same hotel where they had their conference in 2015.

Like last year, my Dad went with me, which I grateful for, especially after foolishly thinking I could maybe go it solo. 

We left early on Friday, and landed in Billy Bishop airport later that morning. Very nice! Smaller, very accessible. None of the insanity of Pearson, where I've flown out of before. 

From the gate, we were taken directly to a lounge for US departures. After two hours, which was exactly long enough to enjoy a snack and finish a sizable comic book, we left for Chicago.

Midway in Chicago was a little bigger, but still pretty easy to get around. A very long Uber ride later, and we were at our hotel. Upon entering, memories of the Chicago conference 4 years ago started flowing back: the entrance a young friend eagerly followed me into on the first day, the hallway where my mother lost it after seeing one too many little guys like me, and the auditorium where I first physically met, and spoke alongside, another older guy with JS!

Anyway, back to the present. After getting to our room, I immediately went to the hotel’s shop and bought a massive bag-full of American junk food to enjoy over the weekend! A couple hours of unwinding, then I met the rest of the Board for our first meeting to discuss the weekend’s events and what people were doing. I described my idea for a fun way to profile adults with Joubert syndrome, which everyone liked. After that, we went out for dinner.

This being Chicago, dinner meant deep dish pizza! The restaurant, Giordano’s, was across the street from the hotel. Fellow Board members were quick to offer assistance with hills and curbs and other uneven bits of terrain along the way. My Dad arrived shortly after we got there.

So good!

Four years ago, I barely made it through one slice of Giordano’s deep dish pizza and a couple one-bite appetizers. This time, I enthusiastically devoured a small portion of salad, a slice of a very good thin-crust Bruschetta-style pizza, and a whole deep dish piece of the best meat-lovers pizza I have ever had! Good conversations were had, plenty of leftovers were divided among various Board members, and then we proceeded to leave, with food comas causing several of us to call it a night.

Saturday was the big work day. It started with a good breakfast and gifts of a comfortable JS pull-over and a new travel mug.

The day’s events were guided by a team of facilitators, who organized several activities to help us define visions, goals, and tasks for the next years of our respective tenures, and for the Foundation in the years beyond that.

Throughout the day, we each got to have our pictures taken, for professional headshots. A very interesting experience! When everyone was done, we gathered for a group photo, which turned out nicely.

At the end of the day, as we were wrapping things up, one of the facilitators, who incorporates art into her work, did up a video for us, sort of a visual representation of the day’s events and accomplishments. 

Very cool to watch!

That night’s meal was out to a fancier Italian place, which was followed by some socializing, outside because the weather was amazing!, then hugs and handshakes goodbye when we were all tired.

Another quick couple flights Sunday, and we were home.

I had such a great weekend. The retreat made me feel like I was making a contribution and that I was a genuine part of something. As always, thank you to my fellow board members for including me, helping me out, and including my Dad in the nightly activities. Looking forward to keeping up the momentum built over the weekend and doing it all again next year.

Cheers!

What Inspires Me

I’ve been called an inspiration, or something similar, more times than I can count by people within the Joubert community. In six years, it’s never gotten old.

What people may not know; however, is how much these same folks, and/or their kids, inspire me.

I love going on social media and seeing photos, videos, and posts from people, whether it’s parents or individuals sharing their personal stories, major milestones of kids and older individuals, or just the everyday, random goofiness that’s good for a laugh.

I enjoy seeing the young kids doing things for the first time, including feats that I wasn’t able to accomplish until much later in my life or still can’t do, like cartwheels, running a mini-marathon, or even walking up a flight of stairs without holding on to the railing.

With the older individuals, especially those who I’ve come to know personally, it’s news of independence that I look forward to. School photos and updates, travels and outings, advocating for themselves, or even things about their own families are personal favourites.

These all inspire me and motivate me to continue to do what I’m doing.

Cheers!

Platypus

Here's a fun, random story I often tell when speaking, perfect for JS Awareness Month.

My very first word was platypus.  Not dog, cat, Mama, or Dada. Platypus!

It took me longer to speak. Sign language was used a lot, but no words.

 When I was little, I would often need chest physio and/or a nebulizer mask to help with breathing issues. Doctors had told my parents to get into a regular routine with this, so they decided to do it while watching nature programs like Nova or National Geographic.

Even though I couldn't speak, my memory and other cognitive abilities were fine, so after routinely being exposed to TV shows about animals, out came "platypus" one day, at random! At least, that's how the doctors figured it happened.

Just something I thought people might enjoy.

Cheers!

My Own Worst Critic

Last night, I watched the video of the presentation (this one) I gave at the Joubert conference in Minneapolis six years ago.

It was my first time watching it in quite a few years and, right away, I had serious thoughts.

First thing I noticed was the sound of my voice. I've never liked hearing it! In this particular video, it sounded so nasally and, frankly, kind of whiny. I actually had to ask my mother (my parents were watching it too) if I really sounded like that.

With the self-deprecation out of the way, there were a lot more positive things I picked up on.

Watching this video, six years later, I noticed how much my speaking has improved overall. There are a lot less umms and uhs, I don't ramble as much, and I can now properly end a speech/presentation. I don't apologize when I mess something up, and I've learned to tone down the corny jokes.

I also picked up on several of my favourite topics that would feature prominently in future speeches and blog posts, like comics, college, taekwondo, and Easter Seals Camp Merrywood.

My presentation ended then it was time for questions, and there were a lot of them! In response to one about when I started speaking, I got to share what I'm now calling the platypus story for the first time, how that was my first word after being exposed to nature shows for so long, which was fun.

In the midst of questions, I was also payed a very nice compliment by a young woman with JS I had met earlier that morning when she and her mom joined my Dad and I for breakfast. I had forgotten all about that, so it was very nice to hear again!

It was interesting to watch myself, even if I was a little too critical of myself at times, and would be a fun exercise to do in the future should I ever be recorded again.

Cheers!

My Why

Why am I involved with all this Joubert syndrome stuff (conferences, the board, writing/speaking, etc.)? That was one of the questions posted during the countdown to JS Awareness Month.

When I was diagnosed eight years ago, I really didn't care for Joubert syndrome all that much. In fact, after doing some research, I was kind of scared off by the fact that there were so many kids who were so different and so much younger than me.

Over the next two years, I linked in with the JS Foundation and joined the online community, but I still did my best to avoid things related to the syndrome.

It wasn't until the summer of 2013, when I was asked to attend and speak at the Joubert conference in Minneapolis, Minnesota, that my opinions about JS started to improve. A huge part of that was actually physically meeting families and individuals with Joubert syndrome. I heard their stories, and shared mine, and suddenly I was noticing similarities and things became more personal. Then that led to social interactions, which led to people asking me to become more involved in the community, which led to me wanting to be involved!

This brings me back to "Why?" I'm involved with the JS community for the social interaction, experiences, and the opportunities to give back to people like me.

Since the Minneapolis conference, I've met loads of other adults with Joubert syndrome, some of whom have become good friends, and a couple I've had the pleasure of meeting in person thanks to other conferences, which is a big deal when you're in Ottawa, Canada, and they're around places like Phoenix, Denver, and Cleveland.

Though it doesn't necessarily have to do with the syndrome itself, the conferences and my position on the Board have allowed me to travel to many great places I never would have ever thought of going to otherwise, like Dallas, Phoenix, and Chicago.

With travel, good food comes too.

I want to go back!

And maybe most importantly, being involved in the Joubert community has given me the chance to advocate for people like myself. I've spoken at other conferences, attended events here at home, led discussion groups for youth and other adults with JS, started this blog, and I'm now a member of the Joubert Foundation's Board of Directors.

So that's my Why, and also Blogtober 2019's first official post.

* If you'd like to learn more about Joubert syndrome, visit the Foundation's website at jsrdf.org

Cheers!