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A couple of years ago, I met Gerry (one of the many friends I made hanging out in the Accessibility Resource Centre my last year of university). Since Gerry recruited me to coach goalball, he and I have spent many goalball and Starbucks related hours together, and I’ve also gotten to know his kids. Today, Gerry shares his perspective on parenting with his eyes closed, and what it’s like to be a dad who is blind.

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Being a parent has its challenges. Add to that the fact that you can’t see what your children are up to and it gets more interesting, especially when they realize that if they are quiet dad won’t know what they are doing. Since I am able to work from home, I have the opportunity to keep the kids on track most days. My wife does an awesome job also, but her work is out of the home.

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So what is it like for a blind dad on a daily basis? I guess it is probably the same for any other parent who has their sight. You wake up early hoping for a few minutes of quiet time before the caos of getting ready for school begins. And then it begins…wake up the kids and get them ready and out the door in time to catch the bus, or else they are stuck taking transit with me and that is not a fun time. Fortunately my kids are pretty good at picking out what to wear for school, I just hope they have matching socks. I know mine don’t always match, but I am not usually looking at my feet anyway.

Once the kids are gone, there is a calm about the house…at least for about 8 hours. I turn into house husband doing dishes laundry and other chores around the house. Yes I do laundry! Our laundry hamper is divided so that you can put your clothes in the right section. If you don’t then I am not help responsible if something comes out a different color. So far so good, or at least no one has said anything. I will also take some time and work for a few hours as well, the bills don’t pay themselves.

There are always a few people amazed by what I can do. I have even had people wonder how I took the bus with one small child and then two children, and also a guide dog. Yes it might have been a bit of a production getting on and off the bus, but I didn’t really care. Why should I have to stay at home just because I can’t see where the hell I am going. But that is a rant for another time.

Well it is almost time for the peace and quiet to end. Now I just need to decide what to make for supper and then get the kids ready for when my wife picks us up for skating lessons.

Yes I may be blind but my day is just as busy as another parent and homemaker.

My friend Elisheva has been a long-time guest blogger on my blog(s), because she is awesome. After I announced my new employers (disclosure update, yo), she offered to provide some tips on working from home (which she has much experience in, although has gone back to the office-outside-her-home world [and even got to go on a work field trip the other day]).  Thanks, Elisheva!! (And thanks for the excitement!)

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Congratulations to my buddy Kerri on not one, but TWO new jobs!  Yay yay yay!  Hurray!  This is exciting cuz, (a) money, and (b) connections and resume building and (c) getting paid to do things you are passionate about!  (I’m only a little bit jealous…)

 
And now to get on with what this post is actually supposed to be about.
 
I’d welcome you to the world of working from home… but I’m not there anymore.  I do have a bunch of experience in that though.  Unlike me, you will not be your own boss (freelancing sucks!), but many aspects will be the same.  Meaning the not going to the office every day part.  The working from home part.  Yeah, that.
 
One of the biggies when working from home is finding balance.  There are awesome things and there are sucky things.  Sometimes things can be awesome and sucky at the same time.  Observe.
 
1) You can work in your PJs or even naked if you want to. (Woohoo!)  But you can also go for days at a time without ever getting dressed or leaving your house.  (Boo.)
 
2) You have flexible hours and can schedule meetings/appointments/hangouts during the day. (Nice!)  But you can also find yourself working your tushy off evenings and nights to meet deadlines when you’d rather be doing other things. (Damn.)
 
3) You can burp and fart and pick your nose and never brush your hair and no one will know or care.  (Whoa, really?)  But you might lose some or all of your social skills by the time you leave your cave and interact with humanity again. (Bummer.)  Back in my translating days, I sometimes went to translator meetings and was shocked to see how socially awkward some of the long-time translators were.
 
4) You don’t have your boss watching you and breathing down your neck all day. (Freedom!!)  But that means that you are responsible for budgeting your time and making sure things get done. (Uhhh… kay…)
 
5) If you have a pet or a child or a never-ending pile of laundry that needs your attention throughout the day, you can be there. (Convenient 🙂 )  But those things can actually distract you and keep you from getting your work done. (I knew there was a catch.)
 
The following things are also added to the list for freelancers:
 
6) You are your own boss and call all the shots. (Power!) But you also have to take care of all of the bureocracy, taxes, advertising, billing and contact with clients by yourself.  You are the company.  (Sucks.)
 
7) You will have months where you have lots of work and make a lot of money. (Score!)  But you will also have months where you are almost desperate for work. (Ugh.)
 
So basically, if you’re still reading, you should have gathered that depending on how you swing it, working from home could either rock or stink, depending on how you swing it.  You’ll likely experience both.
 
And now, finally, here are some tried and true tips from your buddy Elishevathe Former Translator.  These might not work for everyone, but they worked for me.
 
1) Structure is important.  Even though I could have easily slept in, I woke up at 7 every day and started working by 8.  I tried my best to work standard work hours so that I would be busy at the same time as normal people and free at the same time as normal people.
 
2) Give yourself work space.  Get out of your bedroom if you can.  Working in your room will make you sleepy during the day since you associate it with sleeping and you might have a hard time sleeping at night because you associate it with work.  I worked best while sitting on a chair at the table in the living room.  It kept me from getting distracted or drifting off and it made me feel more professional.  Even better is finding a workspace outside of your home like a library, cafe, or workhub.  Getting dressed and leaving the house will also help you feel more professional.
 
3) Give yourself reasons to be social. Going to work provides people with face-to-face social interaction.  When working from home, it’s important to find reasons to get dressed and leave your house.  Go out with friends, go to cultural events, join a class and/or volunteer for a cause you believe in.  It’s important to keep those social skills in good working order, both for your mental health and in preparation for the day when you no longer work from home.
 
4) Learn about your legal rights.  Just because you work from home and the people you work with never see you doesn’t mean that they can take advantage of you.  Make sure you are getting paid on time and that you are getting treated fairly.  You also are working for one organization in another province and one organization in the US.  I have no idea what the legal or tax ramifications of this would be.  It would be wise to find this out.
 
5) Stand up for yourself at home.  Because I worked for myself and made my own schedule, people in my life tended to occasionally forget that I actually had a full time job and would ask me for favors such as babysitting or picking up things for them in the middle of the day.  Sometimes I would oblige if I could swing it, and sometimes I had to remind them that I actually did have a job and while I could work any time, I really prefered to work normal people hours.  So while they worked at an office and I worked at home, I was working just like they were and deserved not to be bothered.
 
Anyway, that’s all I can think of for now.  Looking forward to hearing great things about these new opportunities, Kerri!  All the best and good luck 🙂

Though I lacked a formal term in my lexicon, the concept of “neurodiversity” (though somewhat controversial) is one that I’ve appreciated since long before my own ADHD/LD diagnosis. Typically, neurodiversity is seen as a concept that seeks to portray a variety of neurologically based “disorders” simply as variations—these include ADHD, autism spectrum disorders and Tourette syndrome, as well as specific learning disabilitiesAnother condition under the umbrella is dyspraxia—one that is probably less generally understood than several others on the list. 

I connected with Katherine (whom I always refer to, in my head and out loud, as Kat) several years ago—we connected initially over asthma, but that’s a rarer discussion topic at this point! More often, we’re planning adventures, spending several hours on Skype telling stories, discussing school, or making mug cake (yes, we made mug cake together on Skype—the level of coaching I required was ridiculous, and Kat’s a good person who didn’t make fun of me—too much :).]

Today, Kat is sharing her perspective as an adult with dyspraxia—a developmental delay affecting motor coordination. Dyspraxia is seldom discussed in the context of adulthood, so I’m excited to have Kat here today!

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Hello, my name is Katherine and…

I am a computer programmer.

I am learning American Sign Language.

I am a knitter.

I am a book worm.

I am a condo owner.

I am a Cardinals baseball fan.

I am dyspraxic.

My story of life as a grown up is much the same as any other 25 year old female living in the midwestern United States. I do exciting things like go to work, cook dinner, hang out with friends, and explore diverse and varied interests. However, my brain and I occupy a different motor skills space than yours most likely does. In the early/mid 90’s when I was a preschooler/grade schooler I had motor skill developmental delays. At the time the doctors called it dysfunctional/disordered motor planning, at the time new politically correct version of “clumsy child syndrome” which is now commonly know as dyspraxia. Basically my neurons don’t always connect my muscles to my brain well. Sometimes the message gets through and my body works just fine, other times it gets lost along the way. My writing skills are slow, painful, and took exceedingly long to develop. PE was my least favorite class ever; they always passed me but noted a need for improvement of coordination in activities like running, skipping, and jump rope.

In some ways getting to high school, college, and now the “real world” is easier. I’m no longer graded on my penmanship, and no one expects me to write in cursive. Nor does socialization involve jumping double dutch, although walking in heels is equally perilous. The majority of my work and other written communication is keyed out on a qwerty keyboard of some sort. While learning to type was a challenge initially I’ve taken to keying by touch much better than I ever had to writing. You won’t hear many stories like mine because I’m from the US, seemingly few dyspraxics exist Stateside (UK seems to have cornered the market). Also much more common in males for whatever reason. I’m a grown adult who has found a successful contributory place in society.

The voice of adults with developmental delays is seemingly nonexistent. Not because we aren’t here, and no, we didn’t outgrow it. Turning 18, 21 or any other arbitrary age doesn’t magically catch you up to your peers. Some of it is that we’ve learned how to adapt our lifestyles to avoid skills we haven’t mastered. My cooking has never been dinner party elegant but it tastes just dandy. I’ve found cooking implements that don’t require lots of coordination to work (OXO make some real winners at least for me). I drive a stick shift car of the same brand as i first learned on (so it has the same sized gear box with a clutch that “grabs” similarly). If I’m tired or have a mentally stimulating day ahead of me I don’t drive. Quite simply, while I can drive it takes quite a bit of mental concentration to drive, follow the assigned route and otherwise be attentive to my surroundings. Somedays this is more than I should really take on. I know my limits and live close to a transit loop. My life looks like that of the neurotypical adult because pick surroundings and activities that suit my needs and abilities.

Life is learning and growing and changing the world around you to make it work. Taking it in stride when you trip over your own feet stone cold sober in trainers.

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Kat has a degree in computer science and works as a programmer—she is pursuing American Sign Language as a personal interest (but in the very ambitious form of evening university classes—and watching the videos for my Disability Studies class in the Fall). Kat’s “diverse and varied interests” include several different fitness pursuits (running, cycling, swimming . . . ahem, triathlon :] . . .), making me jealous as she goes to Chicago, and crafty stuff like knitting and—though, I think this has culminated—having all sorts of condo do-it-yourself shenanigans.  

Kat can be found on Twitter as @kat314159 […yes. That is pi there. No, not that kind of pie].

Today, I’m happy to share a piece from Justin Castillo, founder of Haika Clothing Company. If you’ve spent some time here, you’ll know I’m a big fan of t-shirts, and even more-so when there’s a story behind the shirt. Today, a true testament to put in the Badassmatics file, Justin shares how he got started, how he refuses to let asthma hold him back from living an active life, and hopes the message within his clothing will help others with asthma live the same through provoking thought and healthier lifestyle choices (though, I can’t say I’d condone his act of leaving his rescue inhaler at home–keep that shit with ya, people, it’s important!).  Thanks, Justin!

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It all started in March 2013. 9 long months ago, but for me seemed to go by in a blink of an eye. I was reading an issue of Entrepreneur Magazine and learning about all these companies starting from nothing and seeing where they were headed. I thought to myself, “Why can’t I think of something?” I kept seeing all these clothing companies that would donate or give back to organizations and charities such as breast cancer, autism, the fight against hunger, etc. These are all great causes, don’t get me wrong, but it seemed like everyone was helping the same cause. Also, the shirts these companies would offer, just didn’t fit my style. All they would sell were message tees. For me, I like to wear active/streetwear clothes that fits the surf & skate demographic. My “Ah Ha” moment came when I realized why don’t I create a something that supports a cause I am passionate about and offers t-shirts that fits my sense of style. Thus, Haika was born!
Why asthma you ask? I have had it since childhood, so it made perfect sense. I searched all over the internet and couldn’t find a anyone that supported asthma, in terms of a clothing company. So, I combined my two passions: helping those with asthma, and, creating a clothing line that fits my sense of style. Instead of creating message tees, I wanted to create something where the message was already in the brand. Don’t let asthma take control of you. You must take control of it! I want people to do what they love, and not let anything get in the way of that. Whether is it asthma or not.
I’ve played competitive sports, such as baseball and football, throughout my whole life. Of course there were times where I would induce an asthma attack, but I didn’t want that to be an excuse of why I couldn’t continue to participate. I felt that those experiences made me stronger physically and, more importantly, mentally. In some sort of weird & twisted way, i’m glad to have asthma. In a sense of not to take things for granted.
I took it a step further and incorporated a more healthier style of living by exercising and eating properly. I found out that this has dramatically decreased the use of my inhaler and asthma attacks, as well as increasing my energy level. All I want to do now is get out and enjoy the outdoors. I still take my preventative inhaler two times twice a day, but I can leave the home comfortably without my fast acting inhaler. To know that you have it that well managed and under control is a big step and confidence builder for anyone who has asthma.
From idea to reality, I want to see Haika as a company and project, grow not only throughout the U.S, but worldwide. With help of awesome people like Kerri and Stephen we can spread this message and help millions of people with asthma by supporting research and study efforts. With each purchase, $5 is donated to an asthma organization or charity in our customers community. That way they can have a direct impact and feel great about what they are doing! Visit haikaclothing.com for more information.

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Beyond a potential conversation-starter, 20% of your purchase of a Haika Clothing t-shirt will go towards an asthma-related non-profit organization. If you’re working in the best interests of people with asthma and are interested in partnering with Justin, drop him an e-mail!

Following my asthma diagnosis, the world of chronic disease took on a new dimension–not only was I living it, but I was now able to resonate with others who were living it too. I’ve found through these interactions that it is only in part that the same diagnosis creates friendships–however, I also have found many, many friendships with others living with a variety of chronic diseases.

Bob is one of those friends, and he is also not the Roomba (my grandma has a Roomba named Bob. Bob fully understands this reference even if nobody else does). He’s always quick with some wit, humour and support, and is one of the many people I was blessed to encounter who is a member of the Diabetes Online Community. We’ve had many discussions about the parallels between different chronic diseases, specifically asthma and type 2 diabetes–I’m happy to have him sharing his thoughts today!

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My name is Bob. I have a blog (www.tminustwo.net) in which I share stories and perspectives from my life with Type 2 diabetes.

It’s been many months since Kerri first invited me to exchange guest posts. I started a draft at that time, but it’s just been kind of cooking on the back (WAY back) of my mental stove. There’s just been something I wanted to say, but I haven’t know quite what it was or just how to say it. (This is not completely unusual for me. I recently published a post that had been in the hopper for over two years.)

Kerri and I have often discussed the parallels between life with diabetes and life with asthma. Recently on Facebook, Kerri made a comment to me on one of those parallels. I offhandedly replied, “Yeah…if there’s a badger clamped onto your butt, it doesn’t make a huge amount of difference what species of badger it is.”

Ah-ha! THAT, my friends, is what I’ve wanted to say. No matter what kind of chronic disease a person has, it’s an enormous pain in the butt. And while chronic diseases have important differences in the nature of the impact on the folks dealing with them and what managing the condition involves, there are also many things that seem to be very common among those living with these conditions.

For the five years since my diagnosis, I have been an active participant in one online diabetes forum or another. In that time, I have read the stories of many people touched by the various kinds of diabetes. I’ve also, from time to time, heard or read the stories of people with other conditions. And, as Kerri says, there are many parallels.

See if you’ve found yourself saying something like the following:

  • “Because I look normal, people don’t realize that sometimes I’m really sick.”
  • “I work hard to take care of myself, but there are still bad days. It’s so frustrating!”
  • “People say the stupidest things to me about my condition. Sometimes they act like they know more about managing my condition than I do. Even though they usually mean well, it’s annoying and hurtful.”
  • “Dealing with this day after day, year after year, is so wearying and so dispiriting.”
  • “Everybody wants to tell me about their relative that had my condition, and it’s usually someone whose outcomes were really bad.”
  • “My sister-in-law is always sending me articles about ‘cures’ for my condition that are totally whacko, and my neighbor in this marketing scheme is convinced that all I need to do is buy her products!”
  • “Even some of my family members just don’t understand what this is like. Either they don’t get that I’m sick at all or they treat me like I can’t do anything.”

Any of that sound familiar? If you or someone you love has a chronic condition, I’m guessing that some of it does.

For many people living with a chronic condition, participating in social media with those who “get it” can be very helpful. People with diabetes find that the diffuse and informal entity known as the Diabetes Online Community provides a way to exchange information (“Where do I wear my insulin pump with my wedding dress?”) and viewpoints (“I really disagree with this article!”). More importantly, though, it gives PWDs (People With Diabetes) the opportunity to interact with other people who really “get it” and to receive the powerful reassurance that they are not alone.

I don’t know to what extent people with asthma have created similar resources, though I understand that online communities are being formed by people with many different conditions.

To me, this is a wonderful thing and well worth doing. After all, we need all the help we can get – we have badgers clamped onto our butts.