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!