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

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.

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.

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.

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

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.

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.

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.

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.

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.

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 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.