It's New Year's Eve, so I thought I'd do a year-in-review post.
2014 got very eventful very quickly. Before I could think of what to do for the year, I was being approached with advocacy opportunities. A few, such as attending the CORD conference and speaking to the Rare Disorders Network Parent 2 Parent group, I've written about here. Others, like having my story shared in a blog written by the mother of two little boys with Joubert, I'll write about in a later post, one I get permission. For now, I'll just say it was a great experience.
February, 2014 goes down as the moment when I got my first paying job!
After many years of trying, I finally landed paid employment with a call centre. It only lasted a few months, but it was a major first and very rewarding.
Later in February, I got proactive with writing and advocacy by staring this very blog.
The next major event of 2014 was the Canadian Organization of Rare Disorders (CORD) conference in March. I participated in discussions about genetics, policy and advocacy, and spoke to politicians on behalf of the Joubert Syndrome community.
With May came my second year going solo to the Toronto Comics Art Fest (TCAF) for a weekend in Toronto. I took a train from here to there, got to stay in a suite (which was awesome!), had great weather to walk around, and got the complete series of Bone, a comic I read when I was younger. I even met the creator, Jeff Smith, who signed it for me!
Major fanboy moment!
Summer was here, there, and everywhere. I went down and stayed with my grandmother for a few days, spent a lot of time at my family's cabin, attended Ribfest for the first time, and went to my first outdoor rock concert: Sam Roberts and Collective Soul at Ottawa Bluesfest!
With Fall, I decided to get pro-active. I started looking for another job, this time using a service provider who specialises in helping people with disabilities look for employment. Nothing yet, but it's been going steadily. I also set up some speaking opportunities for 2015, but more on those later.
Transitioning to Adulthood with a Disability: Getting Out Into the
Community
Mobility issues, bad weather, social
anxiety, or any number of other reasons can make it so easy for someone with a
disability to become complacent and just stay home, watching TV all day. This
is why it is so important to find a way to get out into the community. There
are many different ways to do this, including working, volunteering, or just
getting out.
Work
Paid employment can be tricky for
anyone to come by. For those with disabilities, it can be harder still. It took
me until just this year to find my first paying job. It was with a call centre
that luckily specialized in hiring people with disabilities. The job was also
done online, so I was able to work from home. This was more accommodating for
me, even though I wasn’t in a social workplace setting.
I was let go after only a few months
(no harm no foul, it was just after a probationary period). Almost immediately,
I looked into an employment services program for people with disabilities. I
met with a service provider who could help me look for work. Some of the
services they’ve provided for me so far have included polishing my résumé and
e-mailing me job ads. I haven’t found work yet, but since I’ve been with my
service provider I’ve been to a couple job/networking events, had a few
interviews (which I’ve done on my own), and I’ve found that I actually have
motivation to look for work. Like other things I’ve written about, it’s a long
process but it’ll come.
Volunteering
Another, and possibly easier, way for disabled
people to get out into their community is to volunteer. Volunteering is a great
way to get out, meet people, and contribute to an organization without having
to worry about factors such as liabilities and finances. It can also be a lot
easier to come by than paid employment.
For over a year now, I’ve been
volunteering in the foundation office of the Ottawa Children’s Treatment
Centre. I used to be a client of the centre, so they seemed like a good fit. I’m
there about once a week, doing mostly data-entry and research for their annual
fundraising campaign. I’m not going to lie, every once in a while it can seem
repetitive. However, it is fun and rewarding. Plus, I’m out in an office
setting among other people which is great.
Just Get Out
One way to get out into the community
is to literally just get out. Go for a coffee, have lunch, hang out with
friends, join a gym, become part of a group or club. Whatever. Just do it.
Explore your community, test your limits, and find places you’re comfortable
going to. Then, it’s just a matter of having the courage to go to those places
and enjoy yourself. It’s a great way to gain some independence and be social at
the same time.
A friend recently posted about a young disabled girl, and how she was being bullied at school. After a while, other parents of children with disabilities commented with their own experiences. As I was reading this conversation, I got to thinking about my own experiences with bullying and people's reactions to my disability.
The Worst of It:
It's happened incredibly rarely (thankfully), but I have been bullied. The worst of it happened when I was in elementary school, at about ten years old. A group of boys (one of whom had been a friend) kept picking on me for a few months and even cornered me on the playground. It stopped, due to parent and teacher intervention, but looking back, I really think it caused me to be less social with people for a while. One positive thing to come out of this was that a few years ago, the former friend reached out to me online, wanting to catch up on what we'd been doing since leaving high school.
Speaking of high school, it wasn't nearly as bad, but in hindsight I realise that I was picked on there as well. This one guy would occasionally talk down to me like I was slow. Nothing awful, just stupid stuff I shrugged off. I think he did it because I talked to his girlfriend once. That part's actually kind of funny when I think about it now.
It's Not All Bad:
Some people's reaction to me have been pretty funny. I started shaving in my early teens, and had a beard by my senior years of high school.
Beard!
This coupled with my short stature, got some interesting reactions. I was going for a walk one day, when I passed a little boy and his mother. As I passed them, the boy stared at me. I couple seconds later, I heard him say to his mother, "Mommy, mommy, that little boy has a beard!" I almost burst out laughing. My parents did too when I told them later.
Sharing My Experiences (and Learning From Them, Too):
A few years ago, I was asked to speak to some of the campers at Easter Seals Camp Merrywood. I had finished my presentation, and was taking questions. One camper asked me if I had ever been laughed at, specifically in college. The question was totally unexpected, and I had to pause for a couple seconds to think about it.
I told him two things. First, in my case it was the opposite. Classmates were actually interested in my disability, and a few people who had relatives or friends with disabilities took it as common ground. Second, I told him that if anyone at a college/university level is laughing because someone's disabled, they're the one with the serious problem.
I'm sure my response helped the camper out, but in a way it helped me out, too. The question, and my response, helped me remember the experiences I mentioned earlier and allowed me to get past them.
It Happens:
Bullying happens. People stare, and say rude things. It sucks, but it's the truth. It happens to everyone. For people with disabilities it can be worse because, in some cases, they can't physically stand up to it.
The best courses of action, in my opinion are education and positivity. Talk to people about your disability first, so they understand you better. If that doesn't work, find people who can see past the disability and just accept you.
Starting a new thing here on the blog. You've heard of Throwback Thursdays, and maybe Feel-good Fridays? Well, get ready for Transitioning Tuesdays.
I've posted about the "Transitioning to Adulthood with a Disability" articles I've written (linked here) and how I recently had to stop due to other things going on in my life. Now, I've decided to continue on with some of the ideas I never got to use, and post them on here. I'm choosing the first Tuesday of every month (starting next month) because 1) it keeps me to a schedule, and 2) Transitioning Tuesday was the closest I could come to thinking of a catchy title.
The blog's going great, though I think I'm going to start posting on here more often. And, I may have some speaking-type opportunities lined up for this summer (not really set in stone yet, more on this in the new year).
What I'm trying to figure out is how to take it further; be more pro-active. Well, I've been mulling it all over for the last couple days, and I think I've got a plan figured out.
First thing, plan more speaking. It was suggested to me that it might be easier to make motivational speaking the priority in regards to advocacy, with the writing coming as a natural second. Seems like a good idea.
Second, do some research. Over the last week, I've been going through things like my résumé, past speeches, and even old Facebook posts to look back on what I did previously, and look for any past contacts who may be able to offer some help.
Third, and probably the most important, look for another job. The service provider I'm with has proven very useful and proactive at helping me look for work. Right now, I'm waiting to hear back from a few places, one of which looks very promising.
All this, plus one or two other ideas I'm kicking around should prove to be effective, or at the very least, keep me busy.
This week marked that truly awesome biannual event I like to call My Housing and Home Support Headache. Five years ago, I filled out some forms to get put on a wait list for accessible housing in Ottawa. Twice a year, I phone in and check on my status, and two things always happen:
My status never really changes
I get angry
A fairly accurate depiction of me during these times.
It's usually around this time that I also look into home support and attendant care. Around the same time I received forms for housing, I also got a package with information about disability support services in and around the city from a rehab centre I occasionally got to. I've contacted several organizations and providers over the past several years, and it's always the same thing:
The lead doesn't pan out
I get angry (Noticing a theme here yet?)
I've been denied various services for various reasons: I'm not disabled enough, I'm too disabled, I'm too young, I'm too old etc. There's usually always a runaround, too. I'll phone service A, who will tell me to phone service B. Then service B will send me back to service A, and so on. At this point, I'm seriously half-expecting to be told to do the Hokey-Pokey and turn myself around.
A few days ago, I asked about getting some updated supports info (the original package is from '08), and got the runaround again. This time, the department I got the original information from said I would have to get a referral from one on my doctors at the rehab centre first. So, I was transferred to what I thought was the doctor's clinic, only it was the centre's main desk. From there, I was connected to the right clinic, but was told I would actually need to see the doctor herself to get a referral. Finally, I was transferred to my doctor's secretary who told me she'd look into getting me a referral.
So now I wait. And while I'm waiting, I'm starting to think it might be time to look at some other options. Maybe it's time to go a few steps above the service providers and talk to my alderman about what I can do, or maybe Ottawa's just too big and I need to look into a smaller city. Decisions, decisions.
Anyway, I've done pretty much all I can do for right now. Just hoping for the best.
In kind of a writing mood, so I thought I'd do a quick-ish post just about what's been going on over the last couple months.
Work:
I stopped working with the call centre in May. Nothing wrong, just didn't make the cut after a probationary period. Soon after, I linked in with a temp agency that specialises in helping people with disabilities get work. They're pretty good, and I had an interview for some office admin/communications work just last week. I've had many interviews for work, but this was the first time I got there and back completely on my own.
Advocacy:
A while ago, I was fortunate enough to learn about a disability advocacy group here in Ottawa. I got in touch with them, and was told they meet up in the Fall and that I'd be contacted then. So, that good news.
I'm also thinking of making a Facebook page for the blog, and other advocacy-related things. If it happens, look for news here.
Writing:
I decided I had to stop writing for Support for Special Needs. Just one thing too many on my plate right now. I'm planning on using some of my leftover ideas for transitioning articles for future blog posts.
I'm really into comic books, and I recently read a story from DC Comics called Kinetic. It's about a sickly, disabled teenage boy who gets superpowers. It's really good and I highly recommend it, but it's also pretty dark.
Now, I've been trying for several years to come up with good ideas for my own comic. I've got a few, but Kinetic's kind of inspired me to try and incorporate disabilities into the mix. Hopefully it works.
Other stuff:
Went on my own to Toronto this past May for the Toronto Comics Art Fest. It was my second year, and was so much better than the first. Great weather, my own hotel room and, best of all, a whole weekend on my own.
After twenty-plus years living in and around Ottawa, I finally went to Bluesfest this year. Saw Sam Roberts, Moist, and Collective Soul, one of my all-time favourite groups! Such a great night, and I was so relieved that the rain and humidity let up just in time.
I've been reading a lot online lately about kids with disabilities going to/coming back from summer camp, or parents looking for a camp or program for their kids. I got inspired and decided to share my camp story.
Eighteen years ago (yep, I'm feelin' old now...) in the summer of 1996, I went to Easter Seals Camp Merrywood for the first time. Located on the Rideau River near Port Elmsley Ontario, Merrywood (MWC for short) is a summer camp for disabled children. A therapist had recommended it to my parents, so they signed me up for a one-week session.
I was eleven, and it was my first time away from home for more than a night, and I think my parents were more scared than I was. I was in a cabin with other boys, some of whom were my age. Everything was adapted to accommodate various disabilities. I tried tons of different activities, including sailing and archery for the first time (both of which I loved).
My first year, drawing something. Probably some kind of monster or dinosaur.
It was fun, but I got a little sick on the last day.
The next summer, I went for another one-week session. Again, lots of fun.
Summer 1999, I attended a teen session for some of the older kids. Same activities, only more independence. I socialized more with some of the counsellors more since many of my cabin-mates were more on the lower-functioning side.
Cabin pic
Summer 2000 was without a doubt my favourite year at Merrywood. That summer I had signed up for a two-week Teen Independence Camp session. Five guys and five girls between fifteen and eighteen years old learning a variety of things like cooking, budgeting, and other independent-living skills, while still enjoying camp. I learned a lot, and camp stuff was still fun, but what I enjoyed the most was just hanging out with other young adults from the group I was in as well as one or two others who were mostly older and higher-functioning. Two of the guys in my cabin even ended up being my roommates in college, and I still keep in touch with most of the people from that summer.
Group pic
Cabin pic
While it wasn't "camp", I attended a weekend youth conference for Easter Seals at Merrywood the next Fall. Some of the same stuff as the Teen Independence session (independence, older kids), only more casual.
2002 was my last year of camp. I could've gone one more time the following summer, but I was getting ready for college. This year was a little different. First off, since I was older and/or higher-functioning than most of the other boys in my cabin, I was allowed to go to certain activities on my own and was even asked to help out a few times. Second, I tried a couple new things. During the session, I went white-water rafting for the first time. It was pretty scary until we actually got in the raft. The best thing happened when I got off the boat. I was walking up a hill to get back to the rafting centre's main building when I saw my parents and sister walking towards me! At first, I didn't think it was them, but they came down to me and told me they were going on a trip similar to the one I had just been on. Only, it turned out that I went though ALL the rapids.
About a day or two after that, I was off again. This time, on a three-day out trip to a nearby campground. It was sad to leave camp, but I was getting older and I was starting to find the activities childish.
Leaving my mark on the Arts cabin
This wasn't the end of my Merrywood experience, though. A few years ago, I had the pleasure of speaking to the older campers about transitioning to adulthood with a disability. Last year, I attended Merrywood's open house. The camp had gone through some renovations, so it was a weird feeling walking around the grounds, seeing the mix of new and old.
Eleven years later
Camp Merrywood was a great experience, and is one of the sole reasons I continue to, and will always, support Easter Seals. In my time at camp, I tried a lot of new things and made a lot of friends, but best of all, I was (mostly) independent. I hope that many disabled children and young adults get to have the same experience, wherever they are.
So, I'm finally doing it. After 2 months and 5 posts of hinting at it, I'm finally going to write about the Joubert conference in Minneapolis.
It was from July 10 to 13, 2013. We (my Dad and I) left from Ottawa the morning of the 9th. Just getting to Minneapolis was kind of an adventure. We had to stop in Toronto first, for a four-hour layover. That, coupled with technical glitches due to some flooding, made things pretty interesting. Then we arrived in Minneapolis. The airport was really cool. We had to board a monorail to get from the gait to Baggage.
We got to our hotel the evening of the 9th, and started to meet people almost immediately. I'll be honest, I was a little nervous for the first day and a bit. For a "kid", I was clearly the oldest. As a presenter, the youngest. Thankfully, my nervousness started to subside as the conference got going the next day.
The first thing we went to was a small break-out session where families of adults with Joubert syndrome had the opportunity to meet with some of the doctors and specialists attending the conference. There were four other adults in the session, along with a woman attending on behalf of her two daughters. The very first thing I noticed was how different each of us was. When the doctors started asking us questions, I found I had nothing to say. Later though, I mentioned about transitioning, writing, and speaking, and everyone was very interested. In fact, one or two people suggested that I could make a career out of it. (This would continue throughout the week)
The next morning, my Dad and I went to breakfast. Halfway through, we were joined by a young woman and her mother, both of whom were at the adult session the previous day. We talked for the rest of the meal and walked back to the conference's main meeting area together. It was fun, and was my first time meeting someone else with the syndrome.
The day's next event was a youth social for the older kids and adults. Even though I was much older than everyone else, I wanted to attend even just for the sake of physically meeting other people with Joubert. The woman running the group started off by asking people about their favourite music, TV shows, etc. It was fun for a little while, but I found that I just couldn't relate to things like iPads, the Disney Channel, and Taylor Swift. I guess I started feeling old. I left about halfway through, and talked to some of the kids later at lunch.
That afternoon was when I was to give my presentation, which I called My Journey with Joubert, Among Other Things. I've posted the video below.
It went over very well, and I got asked tons of great questions. Some, like about walking, talking, etc., I was expecting. Others, about topics like driving, dating, and socialization, were unexpected, but I handled them okay. These questions came mostly from the parents of some of the older kids. Mostly, I found that people were more interested in my stories about going to an accessible summer camp, taking Taekwondo or cute little kid things, like standing on my head or how my first word was platypus (yes, it really was). Afterwards, I got called an inspiration more than I could count. Now, normally I've never really liked that (no idea why, really), but this time I actually did, especially when the compliment came from one of the younger adults.
For dinner that evening, my Dad and I went out. For several months prior to the conference, we had been doing research on things to do or where to go to eat in Minneapolis. While watching shows like Man vs. Food and Diners, Drive-ins, and Dives, we learned about Juicy Lucy's, giant burgers stuffed with cheese. We got excited and decided that we had to try them.
Great timing, Dad...
That night at the hotel, I got a lot more compliments about my presentation. I had one family tell me how much I reminded them of their son, and how their daughter goes to a camp like the one I described going to. A couple parents who had asked me questions, introduced me to their kids, who later wanted to hang out with me. Another family approached us because the father and my Dad were both wearing clothing for two teams with the same name. Their 13-year old daughter, who had Joubert, then started to just come up to me periodically for the rest of the conference.
The Friday had nothing of any particular interest to me or my Dad, so we spent the afternoon playing tourist in Minneapolis. We took a small train through the city and finished the day at the Mall of America.
Saturday the 12th was the last full day of the conference. Originally, I had been asked to moderate a small group about adults with Joubert but, unfortunately no one signed up for it. Instead, some of the parents of the older kids, who had been impressed by my presentation, asked me to take part in a group about teenagers.
I'm in there, but just barely off camera.
I was a little nervous at first, sitting with a group of parents, but it ended up being very interesting. People talked about things like schooling, socializing, and what sort of activities their kids were involved in. When coming up with ideas for future activities, the idea of a Facebook for kids/young adults with Joubert syndrome was brought up. Some of the parents even thought I might make a good moderator for it.
The conference ended that evening with a dinner and dance. I was hesitant to do anything other than eat and take some photos, but one of the mothers got me up, and after a while I was dancing.
Sort of.
The most fun, and the biggest shock, was when a couple of the older kids and their parents wanted me to dance with them. At first, I felt a little old and out of place. As time went on though, I eased up a bit and had some fun.
Caught on camera having fun, also embarrassed.
Really nice group photo that I was sort of pulled into.
We left the next morning after many hugs and handshakes, and planned to attend the next conference in the summer of 2015.
Overall, the conference was an amazing, and kind of life-changing, experience. I met so many great people and have done a lot of new things because of it, including writing this blog.
Cheers
---------------
- Photos used with permission.
- If you're interested in learning more about Joubert syndrome, visit the Joubert Syndrome and Related Disorders Foundation website at http://www.jsrdf.org/
I just realised that I've written several posts now about Joubert syndrome and myself, but I still haven't written about getting diagnosed.
It all started with a fairly routine doctor's appointment in February of 2011. We had moved from the country to the city only a few months prior, and my new family doctor had received some of my pediatric medical records. She wanted to go over them with me, and ask me a few questions. It was going routinely; disability, medications, surgeries, etc. Then, she asked me if I had ever heard of something called Joubert syndrome. I said no, I hadn't, and asked her why. My doctor told me that it was noted on an MRI I had had years ago, but there was no other mention of it in my files. I was given a very brief description, and my doctor suggested that genetic testing might be a good idea due any potential complications in the future, should I have the syndrome.
Afterwards, my parents and I discussed the appointment and I decided to go ahead with the genetic testing.
A few months later, I met with a geneticist. After getting a pretty thorough examination and talking to my parents, she told us that I did have Joubert syndrome (JS for short). She explained what it was, went over the genetic factors (which sort of went over my head), and ran down a list of the syndrome's common traits, and almost everything fit. The diagnosis didn't really change much for me. The only differences are that I now see an ophthalmologist and need to go for regular ultrasounds (eyes and kidneys are two areas commonly affected by Joubert.) After getting six vials of blood taken (!), we went home and did some research.
We looked up some more stuff on the genetics, then looked for photos of other people with the syndrome, and connected with Karen Tompkins, who was president of the Joubert Syndrome & Related Disorders Foundation (JSRDF) at the time. She sent us some information and wanted to meet us later in the summer. So, we met Karen and her daughter Sara for dinner several weeks later, and got a lot more info about Joubert. They were both interested to learn about me.
When I mentioned speaking about my disability in the past, Karen asked me if I would be interested in speaking at a conference in Minneapolis in 2013, to which I said yes.
Hi. I noticed I haven't been on here in a month, so I thought I'd do a quick update post.
Before I start, I just realized I've had this blog for over a month now (Whoa!). And, moving on...
One of the reasons I haven't been on here in a while is because I've been busy with some other things. The biggest is that I've been working more. Near the end of February, I got my first ever paying job! It's with a call centre that's operates online, which means I work from home. It's going pretty well. Within reason, the shifts/hours are pretty flexible, and the pay is decent. I'm still getting used to the whole professionalism side of it, though (setting up a schedule, printing off pay stubs, etc.) I'm getting there.
Looking at getting back into some writing, also. I've been writing articles online about transitioning to adulthood with a disability for over a year now, and I'm starting to come up with a couple new ideas. http://supportforspecialneeds.com/author/scott/. Additionally, I'm getting set to pitch a story idea to Exceptional Parent, a hard-copy/online magazine about disabilities.
Last week, I had my third major advocacy opportunity. I was asked to speak to the Ottawa Parent 2 Parent Resource Network of the Rare Disease Foundation. It was a small parent's group made up of two genetic counsellors and a handful of parents of children of all ages living with rare disorders.
Everything went well. I spoke about my life, going to college, family, getting diagnosed with Joubert, and speaking in Minneapolis. I got a lot of really good questions and comments from the parents, and they said they would let me know of any other advocacy opportunities in the future.
This week, I had the pleasure of attending a conference put on by the Canadian Organization for Rare Disorders (CORD) in Ottawa.
It was a two-day event centring around research, policy, politics and advocacy in relation to rare disorders. It was also my first time at an event like this.
The first day started bright and early, with me arriving at the hotel and meeting Karen Tompkins, mother of a daughter with Joubert Syndrome and my first contact within the Joubert community.
After a quick breakfast, it was down to business.
An introduction by CORD's president was soon followed by several panels and open discussions featuring geneticists, physicians, university professors, and other professionals discussing many of the topics I listed above. I have to be honest, and admit that, at first, most of the information on topics like genetics and politics went way over my head, though I was surprised by how much I remembered about political procedures and bill readings (thanks, high school Civics!). Despite some initial confusion, these panels ended up being quite informative. I especially enjoyed one that focused heavily on patient advocacy (which, I learned, is the proper term for what I'm trying to do in regards to Joubert Syndrome).
This took up most of the morning. After lunch, everyone broke into several groups for more intimate discussions of the morning's topics. Groups I sat in on included one about care and treatment of people with rare disorders, and another about to best define rare disorders in general. These were very enlightening, and I even contributed to both.
The second day was all about politics. We were divided up into small groups and tasked with talking to a few politicians in hopes that they would support a bill that would see the creation of an orphan drug registry in Canada, which would give patients easier access to drugs and treatments. Karen had to catch a flight home that morning, so I was on my own this time. At first I was nervous and debated going home early, but after some reassuring words from one of the conference's organizers I decided to suck it up and participate in the day's events.
We were very well-received by the politicians we met, and they were quite interested in each of our individual stories. One of them was even familiar with Joubert, which really impressed me. Afterwards, a quick debriefing and lunch capped off the conference.
For me, the highlight of the two days was the people. I met so many people with such a wide variety of conditions, many of which I had never even heard of before (my Google browser has never seen so much action). It was very eye-opening to hear about everyone's personal experiences. I even had a few good networking opportunities, including a lead on a possible advocacy opportunity at my former pediatric hospital. I was also fortunate to meet a young woman around my age who is also interested in patient advocacy.
Overall, the conference was a great learning experience and exposed me to a more professional side of advocacy. I've already been asked if I will be attending CORD conferences in the future, and I am definitely considering it.
Big thanks to Karen Tompkins for suggesting that this would be a good opportunity for me. It certainly was.
Today, February 28 is Rare Disease Day. It's a day to raise awareness about rare disorders worldwide.
A disease/disorder/syndrome can be considered rare if the number of people it affects is less than 200, 000. With a current estimate of around less than 1000 known cases worldwide, Joubert Syndrome is definitely rare.
Joubert syndrome is a rare genetic disorder, characterized by a wide variety of symptoms and traits. While many symptoms of the syndrome are common to everyone, each person is different. This is why it is so important to focus on the similarities, and I feel it applies to any rare disorder.
Since being diagnosed with Joubert 2.5 years ago, I've seen and met families and kids dealing with issues I cannot even begin to relate to. However, I have also found many, sometimes humorous, commonalities. I will never know what it is like to be partially blind or need the use of a wheelchair, and I still do not know what a ciliopathy is, but I can appreciate things like a teenager's need for privacy or their love of accessible summer camps, a boy's obsession with superheroes, or even a family that says pop instead of soda.
So, on this day, instead of focusing on the big things that divide us, appreciate the little things that we all have in common.
I'm starting this blog as a way to share my life story and try to help out people going through similar circumstances.
See, I'm 28 years old and physically disabled. About 2.5 years ago, I was diagnosed with Joubert syndrome, a rare genetic disorder (hence the blog name). This past July, I was asked to speak at a conference in Minneapolis, Minnesota about my life with the syndrome (I'll post more about this later on).
Now, I've been speaking about being disabled for quite some time now, but the reactions and encouragement from everyone at this conference, from parents to doctors, and even some of the older kids, has made me want to pursue the speaking, writing, and general advocacy at a more professional level.
I'm very grateful to finally be doing this, and hope people enjoy what I have to say.
