Parenting From A Wheelchair See also: The Mobile Years Explaining Disability to Our Kids

Kelly and I didn’t even have a name picked out before he was born. After eight months of waffling, Ewan and Micah were the boy-name finalists. Choosing a name that he’d carry through life seemed like a big responsibility.

Then out he popped, all wrinkles and cries and vernix and monkey toes. Ewan, I thought. That’s Ewan. “What do you think?” I asked Kelly.

“He’s beautiful,” she said.

I smiled. “Yes he is. What about his name?”

“Ewan,” she said.

I smiled again. Guess it fit.

Of the many unknowns that awaited us on the other end of Kelly’s pregnancy, Ewan’s name was the first to be resolved. Like all first-time parents, we had a thousand questions.

My concerns about being a parent with a disability weren’t related to anything existential — like, what will he think about having a dad in a wheelchair? Or, what will his friends think? I knew enough fathers through wheelchair rugby to understand that to a baby, you’re not the wheelchair guy, you’re just dad.

But some of those dads could also count the number of times they’d changed a diaper on one hand. I have C7-8 motor-complete quadriplegia, which manifests in weak hands and poor trunk stability, and that was where my concerns were: How long was he going to tolerate my floppy-fingered fumbling with a diaper? How would I carry him around and get him into and out of a car seat?

Kelly would be going to back to work full-time after a few months of maternity leave, and I would be on my own with Ewan for eight to 10 hours at a time. I didn’t have the option of trying to change a few diapers, and saying, “this isn’t working, maybe you should just do it.” And I sure wasn’t going to sit inside with him all day. I’d have to figure out how to do things my own way, but I had no idea how Ewan would respond. I shouldn’t have worried. Adaptability is something we often have to relearn after a disability. For babies, it comes naturally.

First Diapers

I didn’t actually get a diaper all the way on the first time I tried to change Ewan. But I didn’t get peed on either, so I took it as a win. He was a week or two old, and I decided I needed to get to it. Diapers are one thing, but everything else, from getting him up onto the changing table to unbuttoning his onesie, was terra incognita for me as well.

By the time I figured out how to get him on the changing pad (on the shoulder first, shimmy forward under the table, then lay him down), he was already starting to get a little fussy. After a few failed attempts, I figured out how to use my right thumb (my most functional digit) to pop open the buttons on the bottom of his onesie. At this point, he was starting to yell a little and landing some solid kicks to my face. In between blows, I was trying to settle the situation with my calm authoritative voice, “Ewan, we will not be driven by fear into an age of unreason. …”

OK, maybe the Murrow impersonation was more in tone than content, but either way Ewan wasn’t buying it. Neither was Kelly, who’d appeared in the doorway to watch the commotion. “You want some help?” she asked.

I did. Kelly came over, got the new diaper on, and Ewan calmed down with ease. I put on my grumpy face.

A few attempts later, I did get pee and poop on me, and Ewan burped milk all over himself — but I also got both of us cleaned up and a fresh diaper on, so I took that as a win, too. It took a few weeks for me to actually get comfortable changing diapers. We were using a combination of cloth and disposable, and each variation required a slightly different technique to get the closures tight enough for the diaper to hold more than a few drops of pee.

Once I got comfortable with the process, so did Ewan. He could sense nervousness and would pounce on it like a tiger. The only way to keep him from getting wild was to be confident that I was actually in charge of the situation. I still took two or three times as long as Kelly did to complete the process, but as soon I was comfortable enough to actually project the authority that I was trying to imitate earlier, he calmed right down with me. He’d have gotten agitated if Kelly took 15 minutes to change his diaper and clothes, but with me, he just seemed to understand — dad’s slower than mom, and that’s just the way it is.

Everything is Better Outside

The motion of being walked is calming to infants, a steady bouncing rock that is evolutionarily ingrained to calm them down. A pushing motion in my wheelchair was definitely not the same thing. Ewan would fall asleep in a few minutes when Kelly put him in a carrier, nestled against her chest while we strolled the neighborhood. When I tried, he’d last a few minutes and then start wriggling and fighting like the carrier was a strait jacket. After a number of unsuccessful attempts, we decided to reevaluate.

Ewan wasn’t going to sleep while on me, but he loved being outside. The fix was to just flip him around to face forward. If we were going to be outside, he wanted to see the world, not my chest. We had a forward-facing Baby Bjorn carrier that had clasps my hands were capable of operating. I could take him out wandering as soon as his neck was strong enough to keep his head from flopping around. Up until Ewan was 5 months old or so, he didn’t weigh enough to really throw off my balance. As he got heavier, and more functional, I loosened the straps so that he was basically sitting on my lap. That way he was supported, but the whole of his weight wasn’t pulling me forward.

Going outside was damn near a magic trick for anytime Ewan started to get fussy. Didn’t matter if it was snowing or 45 degrees and raining, as long as there was open sky and we were moving, he was happy.

That realization was the key to my first year of daddy day care. Ewan is relatively chill as far as babies go, but his moods during year one were a mystery to me. Being hungry pissed him off. Being tired pissed him off. Those I understood and could fix. But there were other things that pissed him off that were entirely invisible to the world in which I resided. Whenever those imperceptible agitators started to tickle his angry bone, I’d take him outside to wander around and, generally, all would be forgotten (see sidebar, page 26).

The Great Expanse Beneath Your Wheels

Another key component of my being able to take care of Ewan while Kelly was at work was being able to get him off the floor. I didn’t want him to be stuck on my lap, and once he started to get more mobile, I couldn’t leave him on a bed or couch and expect him not to wiggle off. Plus, what if I dropped him?

Of course, I did drop him. Once off my lap, which was downright terrifying for both of us. Twice I flipped over backward while holding him. That was less scary for me as I was cradling him and knew that physically he was fine, but it still freaked him out. A practical tip: If you have adjustable center of gravity, move your axle backward to remove some tippiness from your chair before your baby gets strong enough to really wriggle and kick.

Anyway, parenting failures included, there are plenty of reasons I’d need to get Ewan off the floor. But lacking functional back extensors, I can’t sit up from being bent over my lap while holding anything, and Ewan didn’t have enough neck skin to do the tiger cub trick. A friend of ours through rugby — a guy with less function than me who did change his kids’ diapers (sorry C6ers, no excuses!) — had a sling that he’d received from another quad dad when his first was born. It was basically a big oval of fabric, with straps on either side. He gave it to us before Ewan was born and the sling worked so well that I ended up having two more sewn. With the sling, I could get him off the floor with little more than wrist extensors and biceps.

I have other friends who swore by overalls for the same principle — they function like a luggage handle for your kid. With overalls on, I could pick Ewan up by simply sliding my hand under the shoulder straps and lifting. But there were drawbacks. First, overalls were difficult to put on, and though baby ones have snaps at the legs so that you can change a diaper, I couldn’t get them snapped back up while he was in them so a diaper change meant taking them all the way off. Second, depending on the cut, when his full weight was on the straps, the front of the overalls would start pressing up into Ewan’s neck, giving him a bit of a choke. Not ideal.

We wound up with a number of pairs, and after some trial and error, I figured out the ones that fit the best for lifting purposes. The absolute best was a pair of Patagonia fleece overalls. They had some stretch and a V-cut neck, which meant that I could lift him wherever I needed and he stayed comfortable. Alas, Patagonia doesn’t appear to sell these anymore. But if you find something similar, get them.

The Real World

Given their difficulty to get on, overalls weren’t a daily wardrobe choice. I reserved them mostly for when Ewan and I were venturing out in the car. First, let me say that for someone with my function, getting a baby into and out of a car seat sucks. There’s no easy way to do it. Lifting him out away from my body to bridge the gap between my chair and the car wasn’t doable with both hands holding Ewan. Every time we needed to go somewhere, I wriggled the overalls onto him so that I could stabilize myself with my right hand and swing him over into the car seat with my left.

Once he was in the seat, there was usually a good five to eight minutes of fumbling to get him situated, the straps untwisted and the buckles done up. The first few times, he got rightfully pissed. He was used to mom doing it — slip in the seat, click, click, done. But like the diaper changes, he quickly got used to my painfully slow process and would maintain far more patience than he ever would for Kelly.

For that first year I felt like I was continually swimming upstream against my function — trying, failing, adjusting and trying again. The thing about being a new parent is that I was so afraid to mess up. But it’s impossible not to. It’s a learning process, and learning involves messing up. Babies don’t judge you for it. (That’ll come later.) When I was figuring out how to do something new, Ewan would sometimes yell and kick and cry for a while, but then he’d get over it.

People always ask me if having a kid is any different than I expected. Looking back on the first year of the Ewan experience, it was more difficult than I ever would have thought, but it was also way more fun. You’re learning to care for a very needy little being that has no way of expressing his needs other than through crying, and you’re doing it on very little sleep. But you’re also laughing and singing and playing and getting to act like a goon.

Whatever your level of function, to your kid, you’re their normal. Just do what you do, however you need to. To Ewan, it doesn’t matter how I do things. As long as I keep him fed, take him outside, love him, play with him and don’t drop him too often, he thinks I am pretty great.

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Through the Looking Glass

Through the Looking Glass is a nonprofit based in Berkeley, California, that provides services, training and consultations for parents with disabilities and parents of children with disabilities. This award-winning organization has been around for decades, so if you have questions or need help — from assistive products to techniques, support groups and advocacy — they can connect you with the resources you need. They also provide support for parents with disabilities in child-custody proceedings.

• Through the Looking Glass, 800/644-2666; lookingglass.org

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Baby Gear Hacks

Kelly and I both need to get our bodies moving most every day to feel normal, but finding the time to work out is tough with jobs and an infant. Kelly could run with Ewan in the stroller, but I couldn’t push faster than a stroll with Ewan on me in a carrier.

The first solution was an adaptation for my handcycle that Kelly’s dad rigged up while we were visiting in Ohio. We’d bought a Thule Yepp Mini front bike seat off Craigslist, but at 3 months, Ewan wasn’t yet stable enough to sit upright in it. Her dad fabricated a rack that clamped on the frame of my Top End Force CC handcycle. The Yepp seat then clamped onto that rack at a more reclined angle than it would on a regular bike. Ewan could lie in the seat, strapped in and secure while I rode him around.

He loved it from the first ride. When we got back to Portland and Ewan and I were home alone during the day, a morning bike ride was guaranteed contentment for Ewan and a great way to get the blood flowing for me. That was definitely a win.

The world opened up to us a little bit more when Ewan got to 5 months and started to get some sitting stability. Until then, unless Ewan was in the carrier, I had been rolling around with him laid down on my lap, head at my knees. It worked in the house, but I had to hold onto him with one hand and push with the other, switching back and forth to go anywhere. Outside, on any sort of slope or uneven terrain, it simply didn’t work.

When he was more stable, but before he could sit on his own, I started putting him into a molded rubber seat called a Bumbo seat (see photo, above). I’d set the Bumbo on the table and lift Ewan up into it, then wheel under the table and pull the seat down onto my lap. He would kick his tiny little legs in excitement as soon as we rolled outside to head down the block. Realizing how much he liked it, I bolted a webbing strap with sewn loops at either end to the front of the seat. I’d pull the straps taut around the sides and slip the loops over my backrest bar. That kept the seat secure enough that I could wheel at normal speed all over the city, and he stayed stable on my lap.

Related:

Parenting from a Wheelchair: The Mobile Years

Parenting from a Wheelchair: Explaining Disability to Our Kids