Inspiring stories from those living with SMA, ranging from topics of accessibility, dating, individuality, work and adulting.

Amber-Joi

Empowered by possibility

When I tell people that Céline has SMA, they often say things like, "I'm so sorry, that must be so hard for you." But for me, the truth is that I'm comfortable and happy with the busy life that comes along with being an SMA mom. Of course, when I first got the news, it was an extremely difficult time, to say the least. However, at this point, I have completely accepted Céline's diagnosis and have adjusted.

“SMA is a part of who Céline is. It will always be a part of her and I love everything about her.”

I don't think about her diagnosis much from day to day. We've made many modifications to our everyday life, but it's second nature at this point. Céline does just about everything a typical child would do (albeit differently), and she fully enjoys life. I love my life as her mom. She is happy, and that makes me happy.

With that said, she does have limitations due to her disability. For the most part, she seems completely unbothered by her constraints, but there are some days that are hard for us. There are days when she falls a lot, and I constantly have to pick her up because she can't get up on her own yet. There are activities that she simply can not do, no matter how much I try to make them accessible. There are times when she is frustrated. And I get frustrated too.

There are also times when I worry about her future. But these are feelings that every parent feels, whether their child has SMA or not. Frustration, confusion and fear are part of parenting. That's the first thing I remind myself when I feel down - that these feelings are a natural part of life that I should not focus on because there is no room in my day, and they do not serve me. Those negative feelings make my job as a mom even harder, and I simply don't have time for them.

I choose to focus on the positive and the possibilities. Usually, I can will my thoughts into a positive space on my own. But sometimes, that's just not enough, and the negative thoughts loom. In those moments, I lean on my support system. For instance, my husband reminds me that we are fortunate enough to be facing SMA in a time where so much more is known about how to manage the disease than in the past. My best friend also assures me that I'm doing a great job and that Céline has come a long way. At times, I turn to my iPhone, where I have an album of Céline's milestones since her diagnosis.

When you're in this journey day in and day out, as I am, it can be hard to see all that we have overcome, and how much has changed. But when I am able to see pictures and videos of Céline through the months and years, it reminds me that she is remarkable.

“Nothing motivates me and lifts my spirits more than my daughter. I get my inspiration from her. She helps me focus on the possibilities.”

Brianna

None of us is free until all of us are free

It can be hard to stay engaged, especially in advocacy work. There's always something vying for our attention, from social media to petitions to our own health and well-being. Burnout is the inevitable result - exhaustion so pervasive that we have no choice but to disengage at times.

This act of disengaging isn't just natural; it's healthy. It allows us to recharge and rejuvenate, so we can show up as our best selves. But sometimes we forget to return. We've grown so accustomed to isolation that we struggle to look beyond our immediate spheres, beyond our own lives.

I see this a lot in the disability community. Life with SMA - or any other rare disease - is difficult. Sometimes, it's all we can do to look after ourselves, let alone someone else. But I push myself to show up.

I get back to the work.

I try to remember that our community is bigger than it seems. For every person in the #DisabledAndCute hashtag, there's someone out there with unmet needs.

Just because I feel seen, doesn't mean that others do.

This is true for the SMA community - people around the world with different life experiences and resources at their disposal. But it's also true for the disability community at large. Invisible illnesses. Ambulatory folks. The list goes on.

Some of us are thriving, and some of us aren't.

“I feel it's my responsibility to advocate for people without a voice.”

Amanda & Jeremy

Positive thinking

Every parent's journey is different and has its own challenges. I tell myself that negative thoughts and emotions are a normal part of life and can be a natural consequence of a person's experience. Extreme challenges, such as life-threatening medical conditions with children, can naturally threaten my ability to focus on the good because my mind has been redirected to focus on those situations. These experiences can take a toll on mental health, making it difficult to maintain a positive outlook on life. Sometimes I feel like thinking positively is as laborious as training for a marathon.

I try to remind myself that when you're out of shape, it's hard to run a mile, let alone a marathon. You must train to run a mile, so you can run another mile, and then another, until you eventually run a marathon. Consistent training will inevitably improve performance. Likewise, when you train your mind to focus on the good, you can create a positive mindset. A positive mindset is not about wearing rose-colored glasses - it's about training the miles and miles of thoughts in your head to go where you want to be. At least that's what it feels like to me.

A mind's ability to think positively is as varied as a person's physical ability to run. Some people are naturally built to run. These natural runners step on a start line and cruise a mile time that takes others weeks to achieve. Some people can run barefoot or in minimalist shoes, while others need high support shoes. Some runners rarely get injured, while others manage ailment after ailment.

“I try not to focus on comparing myself to others. A little better each day is all relative to my own performance. That’s also the beauty of positive thinking.”

I don't need to compare myself to others to get better at it. I become incrementally better as I train my mind. As much as it may benefit others to be around me thinking more positively, I am the one who truly profits from being positive.

Training to run often creates a strange love for running. I also try to train my mind to push through and work hard, regardless of negative thoughts and emotions. Sometimes I find myself running on a day I felt tired or on a day it was raining. And not because I love running, but because I practiced being a badass long enough to know I can do hard things, even when I don't feel like it.

Just as a runner increases his or her threshold to endure running, I can increase my threshold to maintain positive thinking when faced with extreme challenges. When we actively work toward positivity despite circumstance, our mind has no choice but to follow. This is crucial to keep my mind from going down a sudden, sneaky, scary road not worth racing.

Some of the strongest runners known aren't necessarily the ones who won races; they are the runners who persevered because of their single-mindedness. It is possible to have a mind like a runner who fights the good fight and finishes the course. And I will!

Amber-Joi

Advocating for your child

When my daughter Céline ("jelly bean") was diagnosed with SMA, I was warned that I should not expect her to crawl. She wasn't likely to develop the strength for that particular skill within the age-appropriate timeframe. I made it my goal anyway.

Crawling in an essential building block for advancing gross motor skills, especially for a hypotonic (low muscle tone) child, like Céline. I was (and still am) doing physical therapy with her every single day and, while I don't have a degree in physical therapy, I know my child. I felt crawling was within Céline's reach. I could see her slowly but surely gaining the strengh to crawl, so I continued to push her. Even though I knew it was possible that she might not achieve our goal, I knew that doing the work toward the goal could only benefit her.

We worked specifically toward crawling for a year and a half. I challenged Céline daily, but tried not to overdo it to the point of failure or frustration. I also tried to make the process as fun as possible - because, let's be honest, that's the only way to get a toddler to do physical therapy. We found a therapist whose visions aligned with my goals and six months after working together, Céline was crawling.

We parents know our children best! And if there is something that can be done to help them reach a goal, or to make life more accessible, then as parents, we should do our best to support them.

In conjunction with Céline's medical team and my husband, we make decisions that we feel are best for her, even if they do not fit the mold. I cannot stress enough that I take into account Céline's doctors opinions and hold them at a very high regard since they are the experts. But there are certain decisions that only a parent can make.

Now that Céline is three, she is starting to set her own goals, regardless of what ANYONE says.

“Recently, she told me that when she gets older, she is going to run and jump. So, I’m adding that to my list of goals for her future - and I will be advocating for whatever tools we need to fulfill that goal when the time is right.”

We are currently working on standing up without support from the floor and walking up the stairs. I'm also learning what it means to have a special needs child in school and that has opened up a whole new door of excitement, fear, uncertainty and, most importantly, advocacy for me.

“I did not wake up one morning and say to myself, 'I’m going to become an SMA advocate.' But the job comes with the territory and I’m content to do the work. The rewards are endless.”

Brianna

Showing up, even when it’s hard

I wish I could tell you that following your dream will be easy.

I wish I could tell you that life will reward you for following your dream. For showing up, again and again, even when it's hard.

But I can't.

My dream is to write books. Dozens of them, with swoon-worthy romances and hair-raising plot twists. Every story will feature a disabled girl and have, if not a *happy* ending, a narratively satisfying one. Maybe someday I'll hit the bestseller list, but in all honesty, I'd settle for changing a life. For showing disabled girls like me that they can star in their favorite narratives.

Your dream is probably different. Maybe it's falling in love. Maybe it's seeing the world, or having a child, or living on the beach with a cat, a dog, and lots of friends. Maybe it's all three! But at one point or another, you may feel like your dream is unattainable.

Your partner broke up with you.

Your travel agency won't accommodate wheelchair users.

Your book won't sell.

I wish I could say that following your dream gets easier. That, with time, the sting of rejection will fade to nothing. But I can't. Following your dream is *hard*, especially with a life-altering condition like SMA. Taking risks - like signing up for dating apps or moving halfway across the country - will always be scary.

Here's what I can say.

“Following your dream may be scary. But it’s also worth it.”

Kevan

Swinging at curveballs

Life can throw some crazy curveballs, can't it? I remember once getting off a 19-hour flight to a country halfway across the world and receiving news that my wheelchair might have been left at the airport back home. Thankfully, it was just buried under other luggage, but it was a mess for a minute there.

Still, no matter how many systems we put into place or checklists we make, as long as people are involved, there may be unpredictable and uncontrollable variables to deal with. Curveballs.

I've never been much of a baseball person, but my wife is, so I'm learning.

“One thing I’ve noticed is some curveballs you swing at and some you don’t - because some you know (or at least think and hope) you can hit and some are just clearly not hittable.”

But the point here is that it's not a blanket fact, "swing at all curveballs" or "don't swing at any of them." It all depends on...well, a lot of things. Here are a few factors that I like to consider when that "curveball" is headed my way...

  1. Who is the pitcher? There is often a difference between the challenge itself and the challenger (if there is one specifically, though there isn't always). If a person or organization or building or system is putting an obstacle in my way, I consider their authority and/or expertise on the matter. Doctor, pilot, president? Fence, boat, mountain, stairs? Another friend in a wheelchair, a non-disabled friend or family member, a total stranger?
  2. What's the curve/speed? Some challenges are manageable and realistic, while others simply are not. For example: stairs. It's one thing to face the challenge of a friend's house with one 2" step vs. the third floor apartment with no elevator. In the latter case, I would maybe meet somewhere else or just leave my wheelchair downstairs and have a friend carry me up.
  3. How's your batting? The first two questions kind of go together, and these last three go together as well when considering my situation. I try to consider my own capacity first, and how I might handle the challenge - physically, socially, emotionally.
  4. Who's on the bases? Next, think about who is on your team. What are they bringing to the table in this current situation that may help? I've been really blessed to be surrounded by a lot of creative people who are willing to jump in, go with the flow, and come up with out-of-the-box solutions on the spot.
  5. What's the hit worth? At the end of the day, I ask myself: is overcoming this challenge a hill worth dying on? How will it affect me, my team, the challenger (if there is one), and the unassuming audience watching?

Megan

Navigating a new community

A few years ago, my family and I moved across the country to a lively town of many unknowns: Nashville, Tennessee. As we left our family, childhood friends and familiar surroundings, we were faced with a new scenario and asked ourselves: how do we make adult friends and navigate a new community as an inter-abled couple?

We've come to realize there is a large population of people who have never had friends with disabilities. Because of this, everything in our "normal" scope of life can be new to someone else.

“We knew we had an opportunity to be ourselves and show others that our lives are not as different as they think.”

Our hope was to make new friends, show them the fun people we are and truly enjoy our new city like everyone else did.

Making friends as adults has its struggles already, but mix in the unique situations of inaccessible houses, particular dining preferences and different needs, and you could easily find yourself with a "not-so-typical" friendship.

As we were seeking new adult friend groups, we wanted to help people better understand my needs and how I receive support from others (aside from my significant other). As we embarked on this journey of settling in our new community, we had to be very intentional with reaching out to new friends, putting ourselves out there and sticking true to the kind of friends we know we are and were seeking to have.

We love hosting friends, so we would invite new people over for dinners often. Opening your home and family to strangers can be a big jump for some, but we loved it every time. It allowed others to see us in our element. Me as a mom, Jake as the chef and all of us as friendly people. If that seems too personal, meeting for lunch is another option that has worked for us! Worried that they may pick a place that doesn't do well with your food restrictions or spatial needs? Suggest the location!

We decided early on to be open to new things! As we explored a new town with new friends, there were things we found that just didn't work for our situation, like hiking a waterfall. But we took those opportunities to communicate what would work for us, such as camping or outdoor movie nights.

We realized our new friends were not used to viewing life through "accessible or inaccessible lenses" in the beginning - but I can confidently say that has changed!

Kevan

Creativity and disability
(part 3)

Ever since I could form words, I have been telling stories. It is my great passion in life. After college, a friend gave me a novel by a German cartoonist who pretty much broke all the rules of conventional storytelling.

“I remember sitting at my desk, reading this weird book, and I felt the author say to me, ‘You should share your stories with the world, too.’”

That’s when I set out to self-publish my first book, and more followed over the next few years. None of these books had much to do with disability, and it was a constant uphill battle against people’s expectations.

Finally, I wrote a book about my experience with disability and it was picked up by a publisher. I saw this as two opportunities. First, it was certainly a story worth telling and I was happy to do it; second, I was hopeful that it might grow my audience and that audience would then say, “We see your value as a writer. What other stories do you have?” However, the battle continues.

Last summer, I had lunch with a fellow-writer, and we were sharing with one another our latest projects. I told him about the new book I was working on, and mentioned that one of the minor characters was a man with a disability. My friend’s initial response was that I should scrap the rest of the book and refocus my energies on telling that character’s story, with my unique insight on the subject.

I tell you all of this to say that, if you are an artist of any sort with a disability and you don’t want your art to be all about said disability, I understand your desire and I understand your frustration with a world that suggests otherwise. Whether you are a writer, musician, actor, poet, painter, sculptor, basket weaver, whatever, you are more than the disease in your body and your craft has the capacity to express more than the disease in your body, even if a lot of the world is too short-sighted to grasp that.

Every artist deals with this issue of consumers’ expectations.

“Just as you struggle to be seen beyond your disability in your day-to-day, so you will always struggle in the same way with your art.”

But there are people who truly see you—those couple of friends who really get you. And you will find the same to be true with your art. Through the cacophony of people asking about your wheelchair, there will be a voice or two that celebrate your craft simply for what it is. Those couple of voices are more refreshing than you can imagine. If you pay attention to them, you will be revived, inspired, and carried along just fine. So keep an ear out.

Kevan

Building a community by
putting others first

We live in a culture of self-advocacy and self-preservation. But countless giants of history, including Theodore Roosevelt, have spoken of courage and “daring greatly” with direct correlation to putting others first. And the funny thing about putting others first, it means you don’t get to be first.

“Instead, you have to trust someone else (maybe one of those “others”) is putting you first before themselves in their own lives.”

It is, admittedly, a hard pill to swallow. I have trouble with it every day, but I’m thankful for friends and family who are constant examples and inspiration for me to put others before myself.

I’ve been blessed with an amazing community around me, friends who pour into my life and care for my needs any way they can. My buddy Josh gets off a busy third shift job just in time to swing by my house and get me up in the morning. Last year, my neighbor Danny left his wife and kids for a week and flew cross-country with me to attend the wedding of my cousin – someone Danny didn’t know “from Adam.” At my local coffee shop, the baristas are happy to help me in the restroom, and the other patrons meet my needs like it’s just part of their daily caffeine intake.

And I’m asked on a regular basis how I do this, how I build my network or advocate for my needs. But the truth is, I don’t.

“The truth is, it’s not about me, but about everyone else.”

It may be cyclical, and kind of a chicken and egg situation, but we care for each other. I listen to them, I hug them and invest in their hearts. I ask how they’re doing and help any way I can to make their lives better. My friends go out of their way to shower me, dress me, travel with me, move a chair or pour my tea for me; they care for me because I care for them. If we put each other first, everyone gets taken care of.

Another aspect of building community is that it happens naturally. My community isn’t my doing alone. I’m just one of the guys, one of our crew, and any of us can invite others into the experience of our friendship. My job in all this is to be present and love those around me, and I too invite others in as they come by. And when it comes to your needs as a person with disabilities, as you spend time with new people, and they see your needs met by others, your needs become normal to them and next thing they (and you) know, they’re helping out too.

So, I’d say don’t worry too much about that side of it. Just love people, and don’t hide your needs, but put theirs before your own. Ultimately, it’s not about how people treat you, but how you treat them. That’s what builds community and changes the world for the better.

Brianna

Practicing psychological flexibility in life with SMA

Let's be honest. Life with SMA can feel restrictive. Confining. Imprisoning. You're trapped on a train, and all you can do is let the caboose carry you—even if the tracks are headed somewhere you don't want to go. Sometimes it's a physical constraint: you want to do something, but your body won't let you. Sometimes it's emotional or psychological: you want to do something, but you don't feel capable. Sometimes it's societal: you want to be X, but the world insists that you play the part of Y.

I usually find it's a combination of the three. My body won't cooperate, *and* I don't feel capable, *and* I'm suffocating under the weight of society's understanding of disability. The train is chugging towards a cliff. The doors are locked, the windows boarded up, and someone appears to have sabotaged the engines.

What do you do?

I've been on that train, feeling out of control, more times than I can count. It never gets easier.

“But I have learned to exercise ‘psychological flexibility,’ which is a fancy way of saying that I act in any given situation according to my values.”

But that's the hoity-toity therapist definition. What does psychological flexibility look like in our everyday lives?

I think of it in terms of imagination. Life with SMA can be restrictive. That's just fact. But sometimes we adhere to that fact a little too hard.

“We get so caught up in our ideas of disability that we forget to ask one important question. ‘What if?’”

Years ago, psychologists performed a series of experiments to better understand animal behavior, they repeatedly delivered electric shocks to dogs. Sadly, the dogs who learned they couldn't escape the shocks eventually gave up on escaping altogether. The way out was right in front of them; all they had to do was jump over a barrier. But they had internalized the belief that there was no escape.

This kind of behavior also manifests in humans. Psychologists call it “learned helplessness.”

What if you stop disparaging your body for what it can't do, and instead focus on what it can? What if you choose to believe we're all just making it up as we go along? (This is true, by the way.) What if you stop trying to change society's understanding of disability and put all your energy towards making what you have work for you?

Kevan

Loaded for bear! 5 tips to increase accessibility in your world

Who makes the world accessible? We do! How does that happen? Here are five tips on how to make your world a more accessible place...

  1. Travel in packs: I very rarely go anywhere alone. I’m an extrovert, so I love this! I also can’t really do much on my own, so it works out. I’ve realized the profound need for collaboration to make the world accessible.
  2. Loaded for bear: I’m from the south, where people say, “We’re loaded for bear!” It means being ready for anything. When you’re out and about, be ready for curbs, steps, gravel, grass, oblivious people, so that when you do come across them, you’re not caught off guard. But I’m also talking about a mindset.
  3. Flexible time: So much of accessibility has to do with time. Don’t just allow yourself extra time – actually allow for flexibility of that time. Just roll with it.
  4. It’ll look different: Similar to time, your experiences need to be flexible. It may not look exactly like you dreamed, but how close can you get to the heart of that dream? That’s the beautiful part.
  5. Go for it: The best advice I can give for making the world accessible is to just go out and live in it. The reason places aren’t accessible is because they haven’t needed to be, so go there if you want to, and while you’re there, help find ways to make it accessible.

Kevan

Friendship and caregiving

Friendships are funny things, aren’t they? We enjoy them and cry over them; we strive for them and wonder how they started; we watch them come and go, some passing quickly and others lasting a lifetime. I have been honored over the years to have a bounty of friends and, somewhere along the line, they started helping me with my caregiving needs. In fact, I can tell you where it started!

In high school, I played in a punk band, and the summer that we graduated, we hit the road on our first out-of-town tour. It was just a long weekend, and there was only room in the van (and our minds) for myself and my band mates, so they decided that they would take care of me. I still remember us all piling into a little bathroom, figuring it out together. And I think that’s how it had to happen for me: just some boys being boys, feeling invincible, acting dumb, and somehow landing on our feet.

“That was 16 years ago, and from there on out, it became just part of life and friendship.”

Nowadays, I have about 10 guys who rotate through getting me up in the mornings. None of them are medical professionals, none of them get paid to help. They’re all just pitching in to make my life happen because they’re my friends, they care about me, and I am their friend, I care about them. We are mutually pouring into each other’s lives, enriching one another and building one another up in love. As many of you know, this level of care fosters a sense of vulnerability on both sides and can create a deep bond, as well as profound weariness if the process isn’t managed well. The following are three tips on how to navigate the dynamics of friendship and caregiving for better results in both aspects of the relationship...

  1. Grace and Forgiveness: People make mistakes, and it’s no different when caregiving is involved. Be slow to anger and quick to assume the best of each other as you navigate these dynamics together.
  2. The Balancing Act: Make sure your friendship still has some space outside of caregiving. Have fun, hang out, go see a movie, eat some tacos! No one wants their association to be strictly centered around one giving the other a shower.
  3. Care Goes Both Ways: Always remember, you’re caring for one another. It’s a two-way street. No matter how asleep I am in the morning or how badly I need to use the restroom, I have to intentionally start each day by genuinely asking how my friend is doing and then going from there. You absolutely must communicate your needs with each other and prove trustworthy in your mutual responses of care.
“Friendship and caregiving are not mutually exclusive roles, and I’d even suggest that combining them can lead to wonderful experiences of depth and growth for all involved.”

It’s hard work, but worthy to be considered.

Alex

Accessibility is a right

Navigating a world that wasn’t made to be accessible can be taxing. The extra planning, the coordinating, the calling ahead to see if there’s accessible seating — sometimes it seems like a chore just to go anywhere.

Being denied the opportunity to go out with friends or family because the establishment is not accessible, or not being able to apply for your dream job because the location isn’t accessible.

If you have SMA or a disability, I’m sure you know this all too well.

“Accessibility is a fundamental human need; a human right.”

It can be tough hearing people’s excitement when a place does turn out to be accessible, as if it’s an add-on — something extra.

I’m guilty of feeling “thankful” when a place I went to just happened to be wheelchair accessible. It wasn’t until recently I discovered that the feeling of thankfulness I experienced when I was presented with access stemmed from deep-rooted internalized ableism. This is something we all have to continue to work on, whether we are disabled or not. The work begins with education, awareness and storytelling.

“Through sharing my own experiences, I hope to culminate an anti-ableist society: a society where disabled folks can have access to everything our peers do.”

Accessibility is nothing to be thankful for, because it’s a human right.

Yes, accessibility is a human right, not a privilege.

Kevan

Creativity and disability
(part 1)

I have been writing books for the better part of ten years now, and before that I played in a band. Having SMA, I’ve always caught people off guard with my subject matter.

“It’s been an uphill battle to sing and write about anything but disabilities.”

There is nothing wrong with creating material related to disability, but as an artist, I personally had other things I identified with and wanted to talk about in my avenues of creativity.

My band sang songs and made references to movies, literature, other bands, our short attention spans, and our inability to get girlfriends. It baffled our audiences that we didn’t talk more about the elephant in the room: my wheelchair, whether for awareness or humor. But we were college kids with other things on our minds... like pizza.

When I started writing books, I wanted to tell stories about pirates, time travelers, and zombies. I would include characters with disabilities, because they fit the narrative, but they weren’t the focus. And most folks who read those books said, “These are great, but what about more on the guy in the wheelchair? I want to hear more about him!”

These are tensions faced by every artist, regardless of whether or not they have a disability. It’s hard for most of the world to see past your sore thumb.

“There is so much more to you than a 400 lb wheelchair, and those other parts of you need outlets, too.”

As an artist (of whatever medium), I encourage you to push through. Get creative with how you navigate creativity. A common joke in filmmaking is that you make a film for you and then a film for “them,” meaning there are times when you take creative license to make what you want and times when you give in to make what is expected of you by others. Strike a balance between the two, which might involve striking a balance between your pride and humility, or your freedom and discipline.

“Art is definitely expression, but it’s also a sharing of experience, so it’s a wrestling match of being for you and others.”

Two years ago, I finally published a memoir of my life with SMA, and have received quite a bit of attention for it. I’ve been glad, as I grow in my craft, to share such a story, but I’m also now navigating how to not get “pigeonholed” as a disabled writer.

In the following two articles, we will explore both routes: producing creative material related to your disability, and producing creative material unrelated to your disability. Doing both is possible, and I would actually suggest it, but ultimately, the aforementioned balance is yours to establish with yourself and your audience. And whatever that balance ends up looking like for you, always strive to be honest in your expressions and endeavors.

Amanda & Jeremy

Nurturing your child's dreams

Asher was infatuated with superheroes when he was little. He could not get enough of superhero action figures or costumes and his affection grew tremendously when he met a “real life” superhero at a local event. Asher was only four years old when he enthusiastically and confidently stated, “A superhero is going to be at my birthday party.”

“And so it began, the parent journey of helping our little human realize his big dreams.”

A most memorable six-year-old life-sized dream came true when we took Asher and his sisters roller-skating. We knew our girls could physically skate, but Asher had never walked independently, let alone rolled on skates. That day at the roller-skating rink, Asher did not sit on the sidelines or sit in his wheelchair because he had bigger plans. So, with a lot of help from the business owner and a lot of muscle power from dad, Asher literally skated.

Recently, we watched a show where a main character was announced valedictorian. Asher, now almost eight years old, immediately asked what it meant to be a valedictorian. When the word was defined for him, he said without hesitation, “I want to be a valedictorian.” To which I replied, “I bet you will be, buddy.”

The same way we figured out how to bring a superhero to Asher’s birthday party, or how to help Asher skate, we will figure out how to help Asher become the valedictorian he wants to be.

“We will figure it out together, with encouragement and love.”

And we will welcome those who come along, like that business owner or that “real life” superhero, to help us make Asher’s dreams come true, one dream at a time.

Kevan

Creativity and disability
(part 2)

I remember sitting in a friend’s kitchen a few years ago, talking with him about my future. I saw myself as a writer and wanted to have a go of it as a career. By that time, I’d written a handful of novels, and was in search of opportunities to speak. Sitting at that kitchen table, my friend gently said to me, “You have a story to tell, Kevan. It’s right in front of you.” He had been close to my parents since before I was born. He had walked with our family through my diagnosis, and every hill and valley since then.

“He saw my story better than I could see it myself.”

Up to that point in my life, I would get so annoyed when people suggested I tell my story of life with SMA. I wanted to be known for my talents, not my disability, and turning the spotlight on it seemed like giving up in that fight. Even when that friend said it, I bucked a bit, but he was right. He wasn’t telling me to sell out. He was pointing out that for all my efforts to share deep things with the world, I had my most profound story sitting right there in my lap the whole time and had adamantly chosen to ignore it.

But I still had a hitch in this proposal. Everyone wanted me to share about my life with disability, but I had trouble finding the best angle for it, the right voice, the driving narrative. That’s when my friends and I did something ridiculous. We decided to leave my wheelchair home, head to Europe, and just see how it went.

“Suddenly, and actually without meaning to, I had a very clear story to tell, and a starting point from which to launch the bigger story of my life with disability.”

I know not everyone reading this is a writer or musician. But the principles remain because, ultimately, it’s all storytelling. As we pursue our various creative endeavors as people with disabilities, let us keep a few things in mind:

  1. Be sure you have a story, something poignant for people to pay attention to. Don’t just go around shouting, “Listen to me because I have a disease!” That is literally everyone’s story (we’re all disabled somehow), so find your unique angle.
  2. Be aware of your audience’s needs and interests in the details of your story. Art is a conversation, so exercise that. Only spend time on how you tie your shoelaces if that’s something your audience wants to know. Ask. They’ll tell you.
  3. Be tasteful in two ways. First, how explicitly you tell your story (varies by audience, refer to #1). Second, don’t beat a dead horse. Share your story, don’t preach guilt or pity. There’s enough of that in the world already.

Have fun!

Alex

Finding my why

2020 was hard on all of us.

The pandemic.
The fear.
The new lives we’re living.

For disabled people, the pandemic is reaffirming embedded ableist views in our society. It weighs heavy on my mental health, as I’m sure it does for the entire disability community.

I’ve always approached life with a “can-do” attitude. I told myself that my disability and society’s ignorance about disability would not stop me from living the life I want to live.

“I can’t control others, but I can control myself.”

My feelings.
My life.

I think this rings true, especially during the pandemic and this time of uncertainty that we are all experiencing.

To keep my mind on track and continue on the journey I’m on of living my best life, I find ways to remind myself of the good.

I follow writers and creators who inspire me with their words. I find solace in relatability and human interaction. The innate human need to connect with others and feel seen is something we all desire. Even if they aren’t disabled, I can relate to their stories and that human connection keeps me grounded.

Another thing I do to keep myself grounded amid the chaos of living a life with a disability--where something can change at the drop of a hat--is to pursue what inspires me. To create. I can’t tell you how many screenshots I have on my phone of things I come across while mindlessly scrolling that inspires me to create something, write something, or do something new.

“What I have to give back is my creativity.”

In college, I studied rehabilitation services. In short, that involves working with people who have disabilities and providing education and services to help them live independent lives, in order to arm our clients with the knowledge to be successful – however they define success. This job gave me purpose. It gave me a creative outlet to give back to my community.

I find having a network of people who are supporting me and being able to use my creativity as an emotional outlet is what keeps me sane.

Life is messy, and disability is not excluded. If anything, disability makes life more messy.

My grandmother always used to say, “A dirty kid is a happy kid.” I found it to be extremely true, even in my adulthood.

Life is messy, whether figuratively or literally, and that’s the best part. We never know what to expect. And this has been a year of the unexpected.

We are growing, learning and evolving.

Resilience comes in many forms, but I think finding what brings it out within oneself is what the best part of the journey is. For me, this was finding my purpose, my job, where I can help others.

“Finding my purpose gave me a ‘why.’ Having a why means everything to me.”

Brianna

Working toward
solidarity and equality

We need to hear from people who live at the intersection of multiple identities, but all too often, their voices are suppressed, if not erased, from the narrative.

This is the world we live in. And, unfortunately, the SMA community is not exempt from a variety of “isms” – including racism, sexism, classism, homophobia and transphobia.

So what do we do? How do we practice disability justice in our daily lives, moving beyond equality and diversity – kinds of social activism that, while helpful, address the symptoms of oppression, not the root cause – to solidarity and equity?

“The work begins with humility, and a decision to listen.”

Take an audit of the voices you follow. How many identify as a person of color? How about queer or trans? Is your disability community diverse in background, experiences, culture?

The work begins with a conversation. There are people in our community, and the disability community at large, who have been doing this work for ages, people who are consistently undermined or forgotten.

“They are the voices we should be listening to. Show up, even when it's uncomfortable.”

If you experience any kind of privilege, commit to amplifying the voices of the marginalized. It's not charity. It's solidarity. I would even go so far as to consider it a responsibility.

The work starts right here, right now. So let's get to it.

Kevan

Joy in the journey

I recently had the pleasure of meeting John Morris, a fellow world traveler and founder of wheelchairtravel.org. John and I are not dissimilar in our needs, namely the use of wheelchairs, and though we each approach travel differently in some ways, the core of our experiences is the same.

One topic that came up in our conversation was that of perspectives. We could swap stories all day about the difficulties of travel, especially in light of the recent health pandemic. But that’s not what we reminisce about.

“Our memories rest in the wonder of our adventures.”

I asked John how he maintains that positive outlook on travel. This is where our difference of approach comes into play, because I travel with a group of friends, while John goes solo.

In the pragmatic sense, a lot of my own positive outlook is bolstered by those I surround myself with. I can look on the bright side, but man, it really helps to have folks around me doing the same. John, however, is traveling alone, so his answer? “I try to focus on keeping a cool head with respect to the inconveniences of travel. Air travel, for example, can be quite uncomfortable and frustrating... but by leaving that frustration at the airport, I am able to better focus on the joy in the destination and the purpose of travel.”

“I couldn't help but agree; keeping a cool head is paramount.”

We can’t control those around us, and we aren’t always in control of our circumstances, but what we can control is our attitude toward it. I much prefer to focus on the joys of a journey than the (albeit inevitable) difficulties – not just looking back on the memory of it, but as I am experiencing it in the moment. As I mentioned before, part of how I do that is by the company I keep – that they be of a similar mind. It helps me regulate my “head coolness.” So, I had to ask, “As an independent traveler, what is a practical way you regulate, stay cool-headed and enjoy the journey? You mentioned the example of leaving your frustrations at the airport – how do you do that?”

To this, John made a great point. “It is through an understanding that there is a time and place to deal with conflict. If there is an issue with air travel that cannot be immediately resolved, it is best to address that through the appropriate channels at a convenient time. In nearly all cases, the appropriate time would not be to interfere with the very reason I have traveled. Save that work for after the journey, if possible.”

This is applicable, not only to travel, but to everyday life. Difficulties arise left and right, but they don’t have to ruin everything.

“Adopt a positive outlook by leaving those frustrations ‘at the airport,’ to deal with later and enjoy the rest of what’s in front of you.”

I believe, by doing this, you’ll discover a world of wonder and joy.

Brianna

No one is you and that is
your power

I love all of my art prints, but the one above my desktop monitor has a special place in my heart: “No one is you and that is your power,” usually attributed to singer/songwriter Dave Grohl.

The other day, I was beating myself up over my latest project. The professionals call it imposter syndrome. I was comparing myself to others in my community, writers with book deals and large Twitter followings, feeling like I had nothing to offer. Writing is difficult. Marketing is even harder. Why was I struggling when other people make it look easy? Maybe I wasn’t cut out to be an author after all. Maybe it would be better if I just gave up.

And then I looked up.

No one is you and that is your power.

“I have been carrying stories for a decade, tending to them like I tend to my succulents and house plants.”

Putting them down on paper is hard. I’m sure that publishing them will be equally arduous. But they are still my stories. Mine. And they are bursting at the seams with everything I love, from fairy tales in space to disability representation.

They are not perfect. But they are mine. And therein lies their power. My stories are a curious amalgamation of dreams and experiences. If I do the stories justice and write them well, they won’t look like anyone else’s. They will be flawed and earnest and quintessentially me.

“There is power in that, even if the world—or our inner self talk—says otherwise.”

Kevan

Finding my passion
through travel

A few years ago, some friends and I set out on a trip around parts of Europe. Our destinations wouldn’t be accessible, not in the traditional sense. We wanted to climb the stairs of old cathedrals, dance on cobblestone streets, hike through countrysides and up mountains to ancient monasteries. It was all deemed impossible for wheelchairs, so we left mine behind and took a custom backpack, instead, for these guys to carry me. Our drive, at the time, was just to be together and have fun as a group of goofy friends, but the way we had to do it led to a greater need being revealed. As we returned home from the trip, opportunities presented themselves to interact with other families with disabilities.

“Through this experience, I learned the beauty of enriching the lives of others.”

The joy of inspiring and encouraging these families! That joy far outweighs any thrill of my own exploration, and it leaves a lasting impact upon, not just my heart, but the whole world around me. In one of my favorite movies, the main character talks about how he has realized courage is what interests him most. This is exactly what I’ve learned about myself in this wildly unexpected season of life.

My true adventure is serving you and you and you! My interest is in helping others to find courage and pursue it, to ultimately make the world a better place. It’s a matter of seeing a need and filling it as best I can with the resources I have around me.

Take a look around in your own life. Where is there a need, what is the need and how can you fulfill it? It may or may not have to do with disability – not in the traditional sense anyway.

“The world is full of needs, and we can all pitch in to fulfill them.”

If you have SMA or are close to someone with SMA, chances are your life is full of unique perspectives and approaches to the world. Can these help to fulfill needs and enrich the lives of others? If so, let’s go! Get those ideas and creations out there. Don’t be afraid, don’t grip them too tightly and don’t assume it’s the fix-all. Ask others for help and advice to make the ideas happen, be willing to collaborate, and then get the word out that you see the need and you have an option that may be helpful.

Amanda & Jeremy

I am stronger
because of my son

I find myself around mile 30 of a 50-mile, seven-night trek on the Jon Muir trail in the high Sierra Nevada mountains.

How did I get here?

I’m the model of a modern, domesticated husband and father. Admittedly, groomed for the finer and simpler things of life. Nevertheless, here I am.

Today, I’m mentally broken, dodging mosquitoes and longing for home. “Only” 20 more miles. “Only” two more nights. I miss my family terribly. I want my bed and a shower. An egg sandwich with coffee sounds delightful.

“But the only way home is the same way I got here—one step at a time.”

As I surrender my thoughts to the reality that there is no quick or easy way home, I can’t help but think about my son’s journey with spinal muscular atrophy (SMA). Every day, I watch my son tackle simple living tasks as if he were scaling a mountain. He has no easy way in this life; yet, he tackles every challenge without hesitation, taking one step at a time.

I’ve wanted to cry since the start of my hiking trip from mental fatigue and physical exhaustion, but tonight the tears finally roll down my face.

“Each tear confesses that what I have previously defined to be difficult as a 21st century man does not compare to what I am experiencing as I scale this earth and it certainly doesn’t compare to the challenges my son faces.”

As I reflect on my son’s steadfast and hard-earned strength, I am able to conjure the courage and perseverance to overcome my newfound brokenness. I can wipe away my tears and push on, knowing I am stronger because of my son.

Khrystal

Five tips for practicing
self-care

Self-care is essential, especially when you're a caregiver for a medically fragile child. Just as you stop to fill your vehicle's tank on long trips, you must also replenish your energy through self-care.

“If you don't, you'll end up empty, just as your car does.”

Here are five tips I've learned to help me practice self-care in the more than eight years I've cared for our medically fragile SMA Type 1 son, Hunter.

  1. When you practice self-care, you're helping to ensure you can care for others. If you've ever flown on a plane, you know you must put on your oxygen mask before you put on your child's. Why? Because if your child needs you to put their mask on in the first place, they might require you to put it on again. Should you fail to put yours on first, you run the risk of losing consciousness, and couldn't help if your child needed your assistance again. The same is true for self-care.
“It's not selfish to take care of yourself.”
  1. Choose goals and activities that you enjoy, and are important to you for your self-care. Describe your goals with specificity, so they're clearly defined. For example, "I'm going to run half a mile every day for two weeks." The more specific a goal is, the more you know what you need to do to meet it and can feel accomplished when you do. Start with one to three goals and add new ones as you meet them.
  2. Take time to make time for your goals. Set your goals and try to schedule them for the same time each day. It also helps to plan time for your goals as early as possible in the day. This way, you are more likely to complete them, and before long, you will establish a routine.
  3. Make sure your goals are attainable. My long-term goal might be to run a 10K, but I'm not going to start with that as a scheduled goal. Instead, I'm going to set step-goals. After meeting my goal of running a half-mile each day for two weeks, I would increase my goal to running three-quarters of a mile each day and would keep making incremental adjustments. By doing this, I could celebrate several achievements along the way.
  4. Meet weekly with an accountability partner. Choose someone who can make time to discuss your goals with you each week; it helps to stick to the same day and time, if possible. Try to choose an accountability partner with different goals, so that you can celebrate one another's wins without losing spirit if one of you falls short of reaching a goal. In the first week, discuss your goals and how you will meet them. In subsequent weeks, discuss how you did with your goals, what you could do differently the next week to reach a goal that eluded you, and any new goals.

I hope you find these tips helpful in practicing caregiver self-care and wish you success in meeting your goals.

Kevan

Three tips for your next trip

Traveling is a feat for anyone. Now, throw in a disability – throw in caregivers, equipment, terrain issues – and you have another beast altogether.

“Here are three quick tips for putting together your next trip...”
  1. Intentionality: Traveling is fun, but there is a level of responsibility to keep in mind. As you choose places to go, how to get there and who to go with, be wise. Consider options, challenges and dynamics. Take time hashing it out with your team to develop the best experience possible.
  2. Simplicity: Some concerns are valid, but travel is not your everyday routine, so don’t treat it that way. What in your everyday routine can look differently for a few days? There will be enough to take in and keep up with while traveling without also worrying about what’s not absolutely necessary.
  3. Flexibility: For all your planning, keep a loose grip on what it looks like. There will come unexpected change, unforeseen obstacles and blessings alike. Be ready to rethink plans and go with the flow. This is so integral to the adventure experience and I’d hate for you to miss it.
“These three tips are – ironically enough – applicable to any traveler, regardless of 'handicapability.'”

When planning a trip, everyone needs to be intentional, simple and flexible. But when disabilities are involved, the stakes are higher, room for error is slimmer and the need for clarity in these three categories is more paramount. Prepare wisely, consider humbly, develop loosely and, most importantly, have fun!

Brianna

When your caregiver is your
dad and your best friend

My dad and I can talk without talking. All I have to do is grunt, or quirk a brow, or wrinkle my nose, and my dad is on his merry way. We often joke that we have spent too much time together. If we can read each other’s mind, something’s got to give, if only to preserve our sanity.

“My dad is my best friend.
But he is also my caregiver.”

I live in his house. I eat his food and am responsible for probably 50 percent of our household’s electricity bill. Approximately three times a night, he drags himself out of bed to adjust me in my bed. Sometimes he gives me, his grown daughter, a shower.

Our situation is complex, to say the least. It’s infuriating, but also life-giving, and is a relationship that defies categorization. How do you explain to your therapist that, yes, your dad drives you out of your mind, but he is also one of the few things keeping you alive?

Boundaries are a buzzword these days – interpersonal rules, limits or guidelines that keep relationships healthy. Without boundaries, you’re a dog with no leash, digging under fences and crossing roads at peak traffic times. Without boundaries, you will either burn out or get hurt.

Boundaries are crucial in caregiving relationships, especially when your caregiver plays a dual role. Imagine if your best friend from high school was also your professional caregiver. What would you do if they didn’t show up for work one morning? As their friend, you might be tempted to let it slide. But as their “employer,” you expect them to be accountable, dependable, like any other employee. In this scenario, boundaries would delineate what is and is not acceptable. You might say, “I value your friendship, but I expect you to take responsibility for your actions and treat this like any other paying job.”

Now imagine that your best friend and caregiver is also your dad. How do you navigate that conversation?

It’s not easy. I won’t pretend that I’m an expert. But it helps to acknowledge that boundaries are hard, no matter the situation. It will always feel a little bit uncomfortable, like you’re overstepping in some necessary way.

I always seem to have boundary conversations around our dining table. My feet are in my mom’s lap, my dad is sitting to my left, and I’m staring at a half-empty plate of chicken and mashed potatoes. If history is anything to go by, I’m crying and feeling stuck between adolescence and adulthood because I need my parents more than most people my age.

I leave these conversations feeling wretched. My parents are my best friends. We’re closer than we probably should be. The last thing I want to do is complicate our lives by drawing a line in the sand and saying, “I’m still your daughter, but I’m also an adult. We need to work together, so I can start acting like one.”

“It takes vulnerability to ask for what you need and courage to believe in your ability to compromise.”

But I can say from experience that parents need boundaries, too. Starting the conversation is hard but worth it. Ultimately, you all benefit.

Alex

How did you do it?

I get asked this question from almost everyone when they find out I left my home in the suburbs to attend college six hours away from my family.

“To me, it wasn’t a huge obstacle to attend college with a disability—it was my goal that I was going to accomplish.”

For the disability community, going away to college can seem daunting and out of reach. Everyone is different and should do what is best for their situation. But, if you want to go away to college, I’m here to tell you how I did it and some of my own personal tips and tricks!

  • Tip 1: Research your desired college and look into what sort of disability support they offer. Call the college and talk with the disability resource center about your needs and how they can accommodate you, so you can get the full college experience, both academically and socially. Ask about accessibility, if they provide any personal care support and what academic modifications can be made for your learning needs.
  • Tip 2: Get ready for a lot of responsibility. If you decide to go away for college, you won’t have your family there. You’re going to have to manage your daily care, academics, accommodations, doctor appointments, social life, clubs, etc. I suggest getting a planner and getting yourself organized! Possibly adopt a routine so that you can keep your life organized and running smoothly. In college, there’s a lot going on, and you don’t want to get caught in a rut!
  • Tip 3: Communication skills are key! When you have a disability, having good communication skills are essential, especially in regards to managing your needs and care. Be open with your caregivers about how they can best help you thrive and be comfortable while you’re adjusting to life away from home. Be open with your professors about what your needs are while you are in their classroom. Be open with your peers about your needs, and just have fun!

Having the opportunity and privilege to attend college at the Southern Illinois University Carbondale and graduating with a B.S. in rehabilitation counseling changed my life. Not so much the degree, but the experience as a whole. I made forever friends and have made some of the best memories I’ve ever had in my life. Most importantly, I found myself. I learned that I could be successful and live completely on my own.

“Having the autonomy to do that gave me confidence, dignity and passion that led me to where I am today—living a happy and successful life.”

You can do it too, and I hope my tips and tricks help you realize, you can.

Amanda & Jeremy

Supporting siblings:
our personal tips

As a parent, I have finite time to nurture my children. This is true regardless of having a disabled son, who naturally requires more of my time for his physical and medical needs.

“How I nurture each child in my finite time matters; that’s why being intentional is so important.”

It’s difficult to give each child individualized attention when they are often together, but I find expressing my attention in small ways makes a big difference. My middle daughter loves to hold my hand. Even when I’m with all my children, if I ask to hold her hand, she can sense my attention and love directed specifically to her. Although subtle, my simple intentional action is noticed in her little heart.

Individual time for each child is sacred, so the time deserves to be called something special. When I’m out with one of my daughters, I call it a “mommy-daughter date.” Highlighting the one-on-one time with a special name helps my daughter recognize the dedicated time just for her. Even if the time together is short, the impact is eternal in my daughter’s heart.

It’s important that my daughters recognize that their brother also needs to be nurtured and have quality time, beyond what’s necessary for his medical care. Just like them, he gets “mommy-son dates” too. Just like them, there are specific ways I intentionally express attention and love to him.

Being intentional helps me nurture well, regardless of who needs more of my time.

“Sometimes it’s just as simple as quality versus quantity. Giving my best in the little time I have with each of them.”

Khrystal

Advocacy evolved: becoming
your child's best advocate

I’m Khrystal K. Davis, mom of five, including Hunter, who is eight years old with spinal muscular atrophy (SMA) Type 1. I participate in SMA My Way because I believe it’s important to be an empowered advocate as an SMA patient or parent.

“My advocacy for Hunter started at his birth.”

Hunter was delivered via a C-section at 36 weeks. A medical team of 12 filled the operating room. All went well, and Hunter and I went to the recovery room with a nurse, my husband and my mom, who is also a nurse.

Hunter’s health rapidly deteriorated in the recovery room. He began to grunt each time he exhaled. Hunter was my fourth baby, so I knew this wasn’t normal. I asked the nurse to observe, but she didn’t seem concerned. Still, I knew something was wrong. I asked my mom, and she tried to assure me, “I’m sure everything will be okay.” The look on her face was far less reassuring than the words she spoke, and she left the room.

My mom returned, and a medical team from the NICU rushed into the room behind her. They quickly whisked Hunter away to the NICU. His condition continued to worsen, and he required intubation for respiratory failure.

I had to learn to advocate for Hunter from the beginning, but the type of advocacy evolved following his SMA diagnosis at eight weeks of age. I focused my efforts on getting Hunter an appointment with an SMA pulmonologist, an expert and asset in the SMA community, and medical equipment to help maintain his respiratory health. The SMA pulmonologist changed everything for Hunter—we now had a team advocating for him. I learned how to navigate as the captain of that team.

His specialist referred Hunter to speech, physical and occupational therapists, and they too became part of Hunter’s advocacy team. He enjoyed and flourished in his therapy sessions. Together, we secured braces, positioning seats and wheelchairs. Unfortunately, access to what Hunter needed wasn’t guaranteed, and we frequently received insurance denials. The online SMA community was instrumental in helping us overcome the denials. Other parents provided examples of what they’d done, and I modified those documents to address Hunter and his needs. I also began to anticipate potential questions and concerns and started addressing them proactively, rather than reactively. It was great, because I didn’t have to reinvent the wheel each time to help Hunter get what he needed.

I never anticipated the extent to which I would need to advocate for Hunter. Others in the SMA community paved the path to advocacy for me and knew the obstacles we would face. I listened, learned and adjusted my advocacy as needed.

“Becoming Hunter’s best advocate was a collaborative effort and I’m grateful to the SMA community for helping.”

My tip: Look for people who are empathetic to help you get what you need for your child. When someone tells you no or demonstrates an unwillingness to help, move on to another individual. Instead of trying to change a person’s mind, look for the right person to help.

Kevan

Fostering independence
in your children (part 1)

My sister and I grew up in an amazing home. We have an older brother and a mom and dad who, my mentor would say, “forgot to tell us we were handicapped.”

“We both have SMA Type 2, but our
lives have been full and wonderful.”

Looking back now, I can attribute that to the choices our parents made to foster within us senses of worth, awareness and ingenuity. When I asked mom and dad about these choices, they shared with me some keys to their methods of raising kids with disabilities. Here are a few tips from their perspective:

  1. Not All Danger Is Bad: Adventure is life-giving to kids. Scraped knees and broken arms teach them not only their limitations, but their abilities too. For a child with weak lungs, feeble limbs, or a wheelchair, this will look different from other kids. My brother climbed a tree and jumped in an attempt to fly. I couldn’t do that, but I could circle the roller rink with thirty other people a lot bigger and faster than me, and I could play soccer with my running friends on a bumpy Carolina field. There are foolish dangers, like driving your chair into a pond, and then there are dangers that come naturally with living life to the fullest. The latter should be allowed, and as parents, you will need to accept that your child might get hurt but they’ll grow as a person and ultimately be the better for it.
  2. Let Them Feel Deeply: Growing up is hard in its own right, but then compounding it with a disability makes for a childhood of unbelievable dynamics that many able-bodied adults may never face. Special friendships and broken hearts, cool gadgets and surprise surgeries. It’s a lot to take in. Kids have a profound capacity to feel. They should learn how, and be allowed, to handle those ocean waves of joy, sorrow, love, anger, confusion, etc. As they encounter the world around them, the good and the bad of it, their hearts are tender to the impression it makes. Don’t shelter them from this, but come alongside to help them step into these thoughts and feelings, and navigate such experiences properly to come out on the other end with a healthier, fuller spirit.
  3. Rebellion Is Not Their Disability: Discipline is important for a child learning how to interact with the world. It clarifies boundaries, which at an early age we test to understand. I learned early on that I can’t backtalk my mom or disobey my dad. I’m in a wheelchair, which means I am an exception to some rules, like extended time on exams or having someone else do my laundry, but I’m not exempt from respecting my fellow man and observing the law of the land.

So much of who we grow up to be is derived from the people who raise us, the world they shape around us, and the ways they help us navigate through that world.

“It’s those daily decisions to be present in the good and bad, and to nurture in your child, by example, the depths and value of life, regardless of disabilities.”

My tip: Look for people who are empathetic to help you get what you need for your child. When someone tells you no or demonstrates an unwillingness to help, move on to another individual. Instead of trying to change a person’s mind, look for the right person to help.

Kevan

Fostering independence
in your children (part 2)

Raising children with disabilities looks an awful lot like raising able-bodied children. At least, it can with the right tools and mindset. My parents raised three children, and two of us have SMA Type 2. They made important decisions daily to help navigate our interactions with the world around us.

“By this, we grew up learning how to have rich experiences with our communities and each other.”

In follow-up to my previous article, here are a few more tips from my mom and dad sharing their perspective on how they raised children with disabilities.

  1. Open Door Policies: An open heart is vital for you and your child to survive. Get your family out into the community and have people in your home, too. This breaks down the walls that come up when people don’t understand your family’s circumstances. Letting people into your world can hurt, but it can also be rewarding in the most beautiful ways you wouldn’t expect. We were not meant to carry burdens on our own, nor to celebrate without a party. This will help you to have support, and it will help your child to experience community, how to foster and engage it alike, which will prove invaluable as they set out on their own later in life.
  2. Relatable Moral Support: Not only is it important to assimilate your family into everyday community experiences, but on top of that, find a few other families with comparable challenges to your own. This will help you, your spouse and children all feel a better sense that you’re not alone in this different kind of life. Interacting with the outside world is paramount, but you also just need, sometimes, to hear someone say, “I get it.”
  3. There’s Always Another Way: As your family runs into obstacles, take advantage of these opportunities to foster innovation, creativity, and flexibility by example. I heard a story recently of a family who uses this motto, “There’s always another way!” If you and your family have dreams that seem impossible, work together and think outside the box to find a way. Traveling, picnicking, camping, whatever it may be, it will be encouraging to you, your children, and those around you to accomplish it in your own unique way. And it may be difficult, or take a lot of time and trial and error, but your family is worth figuring it out for, aren’t they? Growing up, my family found the wildest solutions to the weirdest dreams, and now as an adult, I travel the world in a backpack carried by my friends!
“Your choices now as a parent will help
shape who your child grows up to be.”

Do you want them to be free, to have friends, see the world, be a writer, lawyer, scientist, spouse, parent, contribute to society, change the world? At the end of the day, the most important thing is for them to know you love them, and these steps can help in the details of what that looks like.

Shane & Hannah

Home sweet home

During our speaking engagements at elementary schools across the country, a common question we get asked by inquisitive, young minds is: “What do you do if your house has steps?”

“We love this question, because it shows that the students are applying our message about accessibility to a centerpiece of their own lives, the house they live in.”

We don’t need to belabor an obvious fact – accessible housing is rare and difficult to find – but as Hannah and I have just purchased our first home together, we wanted to discuss a few of our observations (and tips!) from throughout this experience.

A frustrating part for me was that I couldn’t accompany Hannah to many of the open houses, due to inaccessibility. We entered the home-buying process with the assumption that at least some adaptations would need to be made to make our future home accessible, so we didn’t limit ourselves by only seeing perfectly accessible houses. The unfortunate effect of this decision was that we looked at many places with 3+ steps at every entrance.

We counteracted this issue in several ways. Sometimes, Hannah would attend the showing by herself (or with her mom!). Hannah made sure to take lots of photos and videos so she could share them with me afterwards. Another option was to have our real estate agent do a “virtual” tour for us. Using a video call on his phone, our agent walked through every room while we watched from the comfort of our apartment. With his video tour and his tips about the pros and cons of every room, it was just like doing an open house in person.

If possible, I’d also bring along my portable ramp to get inside as many of the prospective homes as I could. I enjoyed this method the best, but all three options gave us a great sense of our choices.

With a disease like SMA, requirements for a home are obviously going to vary from person to person, but here are some of the things we asked about and paid attention to when picking our first home:

  • How much work needs to be done to make the front entrance accessible?
  • If there’s a basement, is it a walkout or would we need to install an elevator/lift inside the home?
  • We generally looked only at one-level homes. Multiple floors just mean a lot more work needs to be done to make it accessible.
  • Were the rooms and doorways spacious enough to maneuver my wheelchair easily? In our first apartment, the hallway to our bedroom was so narrow that I scraped the doorway pretty much every time I entered it, which created a lovely, shrill screeching sound. Sorry neighbors!
  • Since Hannah lifts me onto the toilet and into the shower right now, we paid close attention to the layout of the bathroom.
  • An attached garage was pretty much a necessity for us, living in Minnesota where it snows 11 months of the years (at least it feels like). In the home that we eventually purchased, I can drive from inside our house into the garage and right into our van without ever going outside. In no small way, this feature is helping to keep me healthy, as I no longer need to spend time in the frigid cold/ice/snow getting into my van.
  • Does it have a fireplace? This one has nothing to do with accessibility. I just really wanted a fireplace.
“Buying a home is a stressful process for everyone. We did our best to have fun with it, and to remind ourselves that – stressful as it may have been – it was also exciting!”