Topic: Your squad

When I finished my first novel, I knew better than to hope for success. The publishing industry is competitive, especially for marginalized authors who write about their lived experiences. Few writers strike gold on their first completed project.

If you'd asked me at the time, I would have said I was prepared for failure. And I was! But that didn't stop the rejection from hurting. I love everything I write, but that book was especially important to me, as it featured the disability representation I'd wanted since childhood. It was the culmination of a decade of striving — and it went nowhere.

The therapist in me recognizes the shift in mindset as the result of failure. If I hadn't abandoned my book, I wouldn't have questioned my purpose as a writer. I wouldn't have realized that, while writing is difficult, especially in a world that often devalues disabled perspectives, it is also worth it.

I wouldn't have rededicated myself to my craft or written a book that blew my previous one out of the water. Would it have been easier without the failure of rejection? Absolutely. But would it have been as meaningful? Probably not. And that — that's where the magic is.

Lots of people know me as a protective mother. It's not a bad thing. Sometimes, I have to be the mama bear to get things done for my child who lives with medically complex needs. It wasn't until my son Jack turned 6 years old that I realized he could really fend for himself and express his own needs. As his mom, I want to empower him and encourage independence.

Today, Jack is 7 years old and lives with SMA Type 1, as well as mild autism disorder. The combination of SMA and autism didn't allow him to have a voice until he was about 4 years old. Jack has worked so hard to build his voice through help from speech therapy, his educational environment, and our family.

One major takeaway from our conversations is that Jack needs to establish independence early on, so he can be even stronger when he reaches adulthood. So, with the help of our home support system, we are teaching Jack about the power he holds over his own life.

It was about a year ago when my eyes really opened. We were at the hospital, and Jack was being prepped to start an IV infusion. The nurse was looking for a vein on his right arm. Then Jack suddenly told the nurse that the better arm was the left one and to please not use the loud thing. He meant the jtip, which is a needle-free anesthetic and is very loud. Jack does not like the sound of it and sternly voiced his own concerns. It made me so proud to see that he could advocate for himself.

At school, Jack can get emotionally and physically fatigued from the busy school day. He knows that he can simply raise his hand to call his teacher and ask for a break. Often, he needs mental breaks. He's free to roll to the sensory room for a few moments to refresh himself or to have a snack. At home, he will ask for help when he can't reach a toy and is very good at communicating exactly what he wants to eat.

I watch my son live with SMA, and I see it's a daily struggle to get all his basic needs met. He needs help with coughing, showering, toileting, changing his clothes, taking his medications, preparing food, and the list goes on. Before Jack had a voice, we used to do things as a routine, saying it's time to do this or time to do that. I have learned that it's better to encourage him to tell us when he needs something. As a protective mom, I used to think I knew Jack better than he knew himself. The truth is that he really deserves more credit. That's something I learned from my many opportunities engaging with other members of the SMA community.

When I perform at speaking engagements, people often ask what my parents did to set me up for success in life. The answer is simple: from a young age, I was encouraged to be a self-advocate. That's a fancy way of saying they taught me early on how to voice my needs and stick up for myself.

My parents faced the daunting task of teaching their children skills of self-advocacy and responsibility. After all, their main goal of parenting is to set up their kids with the tools, resources, and values for a lifetime of satisfaction and success.

As a young child, I was encouraged to go out and play with the other children in our neighborhood, a process that involved introducing myself and showing my new friends how we could play our favorite games and include my wheelchair in the fun. My parents let me get dirty, make mistakes, and ultimately get into trouble (occasionally!) just like every other kid. In this way, I learned how to help kids understand my disability and realize I was no different than them.

In school, my parents and teachers included me as an equal partner in planning my disability accommodations. They urged me to voice my desires during Individualized Education Program (IEP) meetings. As long as those desires aligned with safety and common sense, the adults deferred to my opinion when crafting my accommodation plan. For example, in 4th grade, when I decided I no longer wanted a school-supplied personal attendant all day, I was responsible for showing the administrators how and why my friends were better options to be my helpers in class. This taught me how to argue, reason, and make smart decisions for myself.

As a teenager, there were times when I hated the "extra" responsibilities. My parents taught me how to make medical appointments, keep a schedule for my life, talk to insurance representatives, and more. I remember having big arguments with my parents when it was time to schedule an appointment, but I just wanted to be playing video games.

Looking back now, as a 30-year-old, I so appreciate my parents for giving me the skills and confidence to manage my life and care. I felt a strong sense of personal autonomy well before many of my nondisabled friends, and I largely attribute that to how my parents raised me. The skills and tendencies I developed throughout childhood turned out to be incredibly useful in my adult life (and attractive to partners as an added bonus). Today, I feel completely comfortable managing all the myriad responsibilities of adulthood, especially factors related to having SMA. Thanks, Mom and Dad!

It's strange. We work long hours for companies that can easily replace us. If we're lucky, we like what we do and receive a fair wage. If not, we do it anyway.

We choose joy.

Sometimes after work, we continue the work required in our family. We respond and act quickly when our child is in distress. We don't sleep when our child is in respiratory distress. Yet, we listen when others tell us how tired they are.

And we choose joy.

Life with a medically complex child often forces us to slow down. Sometimes, life slows to a complete stop. These times are difficult as we watch the world around us move on while we stand still.

But still, we choose joy.

A trip to the zoo means loading more medical equipment into our vehicle than exists in an average hospital room. Suction machines, spare batteries, trach vents, pulse oximeters, nebulizers, etc. The list goes on and on. For our family, it includes transporting two power chairs in a borrowed pickup truck (to be driven separately) with a ramp that works but is super sketchy because the chairs weigh 350 pounds each. By the way, a trip to the grocery store requires the same load. We're spectacles of society, sometimes pariahs.

Time and again, I meet other fathers in our extended community, from all different backgrounds, all different professions, with all different anything - you name it. We not only share our experience of having a child living with spinal muscular atrophy (SMA), but also we share our joy. Not all of us for sure, and not all of us all of the time, but enough that I'm compelled to talk about it. Maybe some of us are faking it, but I'll receive it all the same. Our joy is what keeps us connected to our family and to each other.

Our joy inspires me.

I have always had an entrepreneurial spirit. As a little kid, I was always collecting, trading, and selling things to make money. In my teenage years, I was the go-to babysitter, and I did some side jobs here and there. I worked as a telemarketer during and after high school, but never pursued a career. Money management and financial independence were some things I learned and valued from a young age. I always knew I wanted to be financially independent, but having spinal muscular atrophy (SMA), I faced some challenges.

Over time, I realized I had some mental roadblocks and some entrepreneurial fears that were standing in the way of my creativity and motivation. I was too concerned about the future and was stalled in my own fixed mindset that SMA made me feel stuck or confined. I knew that being in the present moment and figuring out the root cause of my limiting self-beliefs was the only way I would be able to let go of those fears, be successful, and follow my passions.

I started using social media more and interacting with other people in the SMA community. It was and still is empowering seeing other disabled moms and people with SMA putting themselves out there, traveling, and living their best life. My community was giving me encouragement and support. The fear I had of being my authentic self and pursuing my passions was slowly but surely fading away.

When I had children of my own, the feeling of financial confinement I had always felt, started to flood in even stronger. I wanted to be able to offer my children the best life and experiences that I could. I had dreams and goals for myself and my two children that included buying a wheelchair-accessible van, a house, and taking my kids on trips... all things I strive to do. Before having children, as a single person, decisions were a lot easier but now a choice needed to be made on how I was going to live life with my family.

Motivated by motherhood, I gained the courage to move forward. To not focus on my disability, but instead, use my skills and abilities to build a business that helps other people and moms with disabilities to start and grow their businesses. I love networking and building connections. The relationships I've built with different people have helped me get where I am today with my business and life in general.

If there are a few things I've learned about starting a business or bringing a current business to life, they would be:

1. Have a clear vision.
2. Join or build a community.
3. Decide how to balance work and family life.

Having a clear vision is more important to me than ever. It keeps me motivated to continue doing what I need to do and to get where I want to be. I want to encourage my children as my mother did for me, to have fearless dreams and aspirations. Throughout school and into adulthood, I want them to have inner strength and a strong sense of self. All I can do is continue to love and encourage them and their belief in themselves and be an example.

When Céline was diagnosed with spinal muscular atrophy (SMA), her neurologist told my husband and I that physical therapy could, without a doubt, be beneficial to her. From that day on, we committed to focusing on physical therapy at home and incorporating it into our everyday lives. There are so many aspects of SMA that simply can't be controlled. Committing to doing physical therapy is not one of them. Since we can commit to doing it, I've put a lot of energy there.

I'm not a physical therapist. I'm simply a mom, improvising ways for my disabled daughter to reach her fullest potential physically. I get a lot of questions about Céline's exercise regimen, so thought it might be helpful to share what has worked for us.

In some ways, this role comes naturally. I'm a fitness enthusiast and health nut. Exercise was already a way of life. The real challenge was making this a way of life for a tiny person. Getting a toddler who has a lot of physical challenges and her own agenda to do physical therapy day in and day out is not an easy feat, but Céline is a trooper - and because she has been doing this since she was six months old, it has become a way of life for her, too.

And she frankly won't cooperate if she doesn't like something. In the beginning, the majority of our physical therapy happened during bath time because that time already existed in our schedule, and she's always loved water. Now, bath play has turned into swimming, weight bearing exercises have turned into walking, tummy time has turned into crawling and so on. No matter what particular skill we are working on, I try to make it lighthearted and often provide rewards.

I can not take sole credit for Céline's exercise regimen. It is a team effort. If Céline doesn't cooperate, nothing happens. She is the most important factor in this equation. We work with physical therapists at home and in facilities that help us create short-term and long-term goals and exercises to accomplish them. I keep in touch with other SMA parents and we share tips, tricks and news on the latest equipment. Nothing motivates Céline more than trying to keep up with her peers, which is why she spends a lot of time in school, on the playground and doing extracurricular activities.

Now that Céline is in school, fitting in daily at-home exercise has become a bit more complicated. We generally do physical therapy before school, depending on how the morning is going. On Saturdays and Sundays, Céline does exercise with her nanny, who is a student working toward her degree in physical therapy.

There are days when we simply can't or won't do physical therapy, like holidays, sick days or when we're on vacation. On those days, we sneak in physical therapy in other ways. We might ask Céline to walk instead of using her stroller. On vacation, we may spend extra time in the pool. On rare occasions, we may not do physical therapy at all. However, we all need a break sometimes. But when vacation is over, we're right back to it, refreshed and ready to rock and roll.

I'm Kristen, single mom to one very incredible boy, Jack, who is six years old and lives with spinal muscular atrophy (SMA) type 1. Until you're a parent to a child with a medical condition, it may be hard to know the depth of your strength, determination, and resourcefulness.

I gave birth to the most precious boy, Jack, in August of 2015. I often found myself daydreaming of a life with just my little boy and me. I dreamt about adventures with him at the beach, riding roller coasters, going to soccer practice, and traveling, just the two of us. Jack and I have lived with my parents since his birth. I'm so glad we do, because I didn't know what the future held. When Jack turned a month old, we noticed something different about his body. Our pediatrician also took note of Jack's lack of head control and the changes in the movement of his arms and legs. The next day, we were sent to a neurologist, who immediately thought he had SMA. Two weeks later, Jack received his official SMA type 1 diagnosis.

As SMA started to show in Jack's little body, I quickly realized the power of educating myself. The experienced SMA community shared real-life stories with me and others in my shoes. Virtually, they taught me ways to fit physical therapy and the tips we got into our lives. They told me what toys were best for someone with little movement. I learned how to make our house accessible. The community is a wealth of knowledge and support. I felt strongly that I needed both. I quickly made close bonds with lots of parents; after all, we had so much in common. They have provided so much insight into my motherhood and parenting journey.

As a single parent, I've needed to build a village of family, friends, doctors, nurses, therapists, SMA families, and use online resources. I am so grateful for my parents' help that I have labeled them "co-parents" of Jack. I love them so much, I wouldn't have it any other way.

I've made myself a person of service to the community, which has brought me so much happiness. Community events are my happy place. Just seeing everyone together (SMA-affected, unaffected, parents, family, and friends), it's an emotional experience.

My parenting journey has been all over the place. We went from being told Jack may have a shorter life expectancy to realizing that there is so much hope for those with SMA. I do my best to make sure that Jack is happy and comfortable. I find power in focusing on the things he can do, instead of the things that are difficult. Then finding solutions for things that seem difficult. Jack has been on some scary roller coasters, walked the beach in a hiking backpack, and has been on many vacation adventures. Jack and I even went on our first solo trip earlier this year! So far, we're doing pretty well at accomplishing all the daydreams I used to have and creating new ones.

All lives are special, but I like to think that we are some of the lucky ones. We are lucky to know the value of every single day and every little and big milestone. I get by with a lot of help from my family and friends in the SMA community. How do you get by?

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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!

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.

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.

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!

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.

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.

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.

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.

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.”

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

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.

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.

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.”

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.

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.

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.

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!

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.

We navigate life as an interabled family in a moment-by-moment way.

We do what we can, when we can; but, more often than not, we choose fewer activities and fewer people. This forces us to be deliberate and be intentional with whom and how we spend our time.

We spend time with people who recognize our life runs at a different pace. People who consider accommodations so our disabled son, Asher, can be included in activities. People who are willing to help when things are hard. These are the people who won’t be bothered by coming to our house instead of a park when it’s the best accessible option. These are the people who will swing by on a moment’s notice to pick up our daughters, so they are not stuck at home when their brother is sick. These are the people who understand we can’t always do it on our own, and they are willing to be our village.

Our family ebbs and flows based on Asher’s health. When he is doing well, we are full steam ahead. This is when we register the children for a special activity in the community, we take a spontaneous family trip or we try something new. When Asher gets sick, everything slows down, sometimes to a standstill. We try to divide and conquer when possible to maintain activities for our daughters, but at the same time, we’ve learned that slowing down is a team effort, and as a family, we are in it together.

Activities often require a delicate balancing act. Asher usually needs modifications or extra assistance to participate in activities. Many times, his sisters want to do things that their brother can’t do. In spite of these challenges, we often celebrate our parental victories when we make the impossible possible. But there are times we help our children understand our limitations or their limitations literally make some things impossible to do. Limitations are hard for children to accept, but it helps to reframe their mindset to think about all the times and ways they have and will push past the immediate limitation.

It’s not always easy to tell how our children are navigating through our interabled family life. We catch glimpses that show us they are doing just fine. Like the moment at a friend’s house when Asher’s sister pushes chairs out of the way to make room for his wheelchair. Or the moment Asher celebrates his sister’s accomplishment for something that he will never be able to do himself. These moments help our hearts rest a little easier. But it’s when we are sitting around the dinner table telling jokes or snuggled up in bed watching a family movie that we know the simplest and sweetest moments are the keys to their hearts – no matter what life they are navigating.

Many of us living with SMA can identify with a recurring pattern of thought that I have named my “Burden Complex.” It’s an idea that I’ve written about at length, but I believe it’s such a common part of growing up with SMA that it’s worth mentioning again.

I felt like I was bothering people. I felt like I needed to minimize my needs in order to be less of a burden to my loved ones around me. It wasn’t a constant feeling, but it was certainly hard to deal with when it did arise. These challenging emotions caused me to repeat a similar phrase when asking for help, “I’m sorry, but…”

“I’m sorry, but could I have another sip of my drink?”

“I’m sorry, but could I use the bathroom?”

My apologies were often met with the same reaction. My loved ones or friends would say, “You don’t need to be sorry, I’m happy to help!” Still, this constant reassurance did very little to alleviate my burdensome feelings.

It wasn’t until I met (and fell madly in love with) my fiancée, Hannah, that I was able to truly say goodbye to saying sorry. With a seemingly simple question, Hannah helped me better understand my Burden Complex, and thus, move on from it.

The conversation went something like this…

“Hey Hannah, sorry but can you grab me a snack?”

“Sure, my handsome and intelligent and funny Shane, but you don’t need to apologize. You know I love helping you.”

“I know, but what if you’re just saying that because it would be mean not to say it?” (This was a classic way that my Burden Complex would negate the reassurances from others.)

“Do you enjoy being my boyfriend?”

“What? Yes, obviously.”

“But what if you’re just saying that to be nice?”

“Of course I’m not! I love you!”

“Do you see how that feels? To be questioned about something that you obviously mean whole-heartedly?”

This is obviously a simplification of a healing process that takes time. Even today, I have moments where I catch myself thinking of myself as a burden. But by stopping myself from apologizing for every request and reminding myself that loved ones have no reason to lie about their willingness to help me, I’ve made great progress in seeing myself and my needs in a healthier way.

When I’m not traveling, I spend most of my days at my local coffee shop in downtown Fort Wayne, Indiana. Sometimes, it’s bursting at the seams with patrons coming and going and sometimes, I’m the only person there besides the baristas. Over the past six years, I’ve met writers and artists, lawyers, priests, corporate moguls, politicians and touring bands who haven’t showered in three weeks. I’ve met college kids, homeless people, delivery guys, blue collars and nine-to-fivers.

I get to see the various ways people respond to me socially, and how I respond to them; I get to witness firsthand the many myths about being social with a disability, both externally and internally; and I get to experience the intensive work and immense joy of debunking those various myths. I want to focus, in this article, on two myths in particular, and clarify that these two myths are the result of expectations—and thereby, the mutual responsibilities—of our able-bodied and disabled communities alike.

1. “All of my friends should help me.” Having a disability is tricky because you have unusually practical needs, they need to be met, and that’s just life. You’re so used to having these needs that finding ways to fulfill them is second nature to you by now. So, why shouldn’t it be second nature to all of your friends, too? A myth that folks with disabilities often fall prey to is that everyone in your life should participate in helping with those needs. And I see how we get there. It makes sense if that’s your everyday life. It’s my everyday life. Folks on the able-bodied side of this conversation fall prey to it, too, and run away at that ominous mountain of expectation. Can you blame them?
2. “None of my friends should help me.” There’s another end to this issue, which is the assumption that no one can help you, should help you, or even wants to help you. Personal care, food prep, doors and jackets; all of that is your nurse’s job or your parents’ responsibility. Friends are friends, and we expect them to be there just to laugh and watch movies with. What a miserable myth to live under, though. And when this is your mindset, no one knows your needs, so then they assume there’s nothing for them to help with. The relationship remains shallow, stagnant, and unsatisfying for everyone involved.

Rich social experiences come from balancing vulnerability and awareness. Some friends will be closer than others, some will help in ways others won’t, some won’t physically help at all and that’s just fine. Make your needs known tastefully and sensibly as they arise and as those around you seem willing (qualification is another myth we can address later).