A Peek Behind the Curtain of Being an Uncle with SCI

Being an uncle is awesome. Let me rephrase that much more accurately: being an uncle is (bleeping) AWESOME!! It’s the best job on earth. I love everything about it. My three year old nephew is a happy, sweet, smart, fun little boy with a good sense of humor. A lot of the time he is much more into being outside (“Go outside!”) playing and doing yard work type stuff than he is playing with his toys inside. My two year old niece is a handful too. Depending on her mood she toggles back and forth between a precious little girl playing with her “pretties” and a highly demanding diva. She is also fearless and thinks she can do everything her brother can. They’re quite a pair. They’re fun and cute and crazy and just being around them makes my day. I love them more than I ever could have imagined. It’s been a great ride so far.

But as great as it is being an uncle, being an uncle with a spinal cord injury is a whole different ballgame with its own set of challenges. Because as doting as I am (very), as a quadriplegic I am also very physically limited in the level of active interaction that I can have with them. So out the window immediately are things like wrestling around, piggy back rides, taking them swimming, and all the related fun stuff that I would like to do with them under normal circumstances. In other words, the stuff that garners you super cool hero uncle status. I don’t dwell on it but it’s still tough.

More practical are the frustrations that stem from my limited upper body strength and not having full use of my fingers and hands because it prevents me from doing the most common uncle duties. For example, I can’t change diapers and clothes, which honestly is a “positive” since I’ve sidestepped oodles of messes. But the bigger picture issue is that it eliminates my ability to babysit or take the kids on my own for any length of time until they’re older and quite a bit more independent (e.g. potty trained, etc.). Related, in order to hold them someone else has to put them on my lap since I can’t scoop them up myself. Shoot, my nephew was such a big baby that I needed a pillow under my arms to help me feed him a bottle. Now that they’re big enough to crawl up into my lap by themselves it’s cool, but I still miss out on having a lot of that close contact whenever I want.

Hand in hand with all of that are the more isolated moments that are difficult, not to mention downright heartbreaking. I’ll never forget the first time that my almost one year old nephew crawled up to me, sat up, and raised his arms to be picked up. All I could do was say, “Sorry buddy, Uncle Shawn can’t do that,” as he responded with a crushing “You don’t want to hold me?” look on his face. Another time he tripped and racked his shin on the edge of my van’s ramp and quickly looked up at me for help saying “Owie!” but all I could say was “Go find mommy, she’ll help.” There have also been a few times where my niece has held out her hand for me to help her down the stairs and I can’t do that. I try to shrug that stuff off because I know they’re too young to understand but it’s still quite sobering.

The worst moment by far though occurred almost a year ago when my then two year old nephew fell into the pool right in front of me. He was sitting on the side of the pool on a “timeout” when he started having a grand old time kicking his legs and splashing the water surface. But when he started kicking harder his momentum shot him forward into the water. My brother in law was three feet away in the pool so my nephew only bobbed under the surface two quick times before my “brolaw” grabbed him. It all happened so fast that my nephew didn’t really get scared, but it was still quite tense obviously. The toughest thing was that in that instant I knew that on paper I was the most qualified person to execute a water rescue-skilled swimmer (high school swim team), CPR certified lifeguard, waterfront instructor at a Boy Scout summer camp-but by the same token in reality I was also the only person by the pool who couldn’t do anything about it. Nightmare stuff. So all those are the times when I wish things were different the most.

But this situation also breeds a handful of positives that I embrace. First, even though we don’t have that “normal” relationship, the one that we have is very special and unique. Starting with my wheelchair, which by itself can be kind of awesome to kids. I’ll often catch them scoping it out and every now and again they stash toys in the undercarriage or in my side saddlebag. Right around the time my nephew was one I started giving him rides on the back and ever since he just gets on for rides at will, no matter where we are, and loves it. Within the last six months my niece has followed suit, except the bigger thing for her is just getting on and off by herself. Every now and again lap rides suffice too. Recently, they’ve enjoyed incorporating me into their bike riding. Easter weekend they thought it was outrageous fun when I chased them around. Three weekends ago my niece kept yelling “C’mon Uncle Shawn!” so I would follow them as they bombed between the front deck, ramp, and driveway. It was adorably priceless.

The various ramps I use? Fantastically fun. Their favorite room at my parent’s house is the ramped hallway that goes from the garage to my room; they just run up and down that ramp over and over again. By extension, my van is by far the most fun vehicle. They run inside the second that ramp hits the ground. They can crawl into the seats by themselves and peek out of my driver side doors like a porthole. My nephew loves riding in “Shawn’s car.” Few other uncles bring all that to the party.

Another positive spin I put on it all is that I know with me playing a key part in their lives that they will grow up to be more aware, accepting, and inclusive of people with disabilities and other relatable differences. As it is, kids are growing up in an era where disabilities have become much more mainstream than when I was young. But our kids already have a big time jump start on their peers. They don’t know any different other than having an uncle in a wheelchair so they treat it like it’s the norm. By consequence we have also slowly gotten to a point where the wheelchair isn’t a factor. My sister recently remarked that it seems like my niece doesn’t see the chair at all because she pushes on my legs and says “beep beep” when she wants to get by me the same way she does to everyone else. They also grab my hand to lead me places like there’s no difference, which I love.

But on the other hand, they’ve already acquired a savvy awareness of the differences too. When my nephew wants me out of bed he drags my mom into the room and says, “Get Shawn up!” because he knows she helps me out with some stuff in the morning when I’m visiting home. They also try and help in moving my wheelchair over to the bed because they know I need it. When it’s time to go inside they gesture wildly for me to follow them up the ramp. Sometimes they like to try and help push me or hold doors open for me. So I know that all of this will have relatable, bigger picture, real world application as they get older.

All that being said, even though the uncle relationship that we have isn’t quite the one that I pictured having someday, the one that we do have so far is pretty great. Moreover, it’s carved out its own “normal” niche that in a lot of ways I wouldn’t change. And if these kids grow up to do things like stop their classmates from picking on someone who’s different, or grab the door for someone in a wheelchair in a casual no thanks necessary kind of way, then on some level the tough moments that I’ve had along the way will be worth it.

Are you a parent, aunt/uncle or grandparent with a disability? What frustrations or opportunities has your wheelchair or disability created with kids? Have kids reacted to your disability in a way that gave you a new perspective?

7 replies
  1. Jackie Kaufenberg
    Jackie Kaufenberg says:

    Great article Shawn… Funny how you mention about diaper changing. My brother says he will ONLY babysit my kids when they are out of diapers (1 down, 2 to go!). I can definitely see how your chair looks like a sweet ride from a kids point of view… like you have your own Hot Wheels?! :)

  2. Charlotte
    Charlotte says:

    Thanks for the story. I can relate to much of it, and it was a pleasure to read. Thanks for your candid and positive tone.

  3. marie clement
    marie clement says:

    I really enjoyed your article and could relate. My son was 6 months old when I had a roll-over that left me a c-7 t-1 incomplete guad. Learning to be a mom was bittersweet and there were many times I wished I could pick him up when he fell, though he learned to come to me when that happened, but there are many moments that shaped him into being a self-reliant 13 yr old. I’ve helped raise 2 grandkids and a little 3 year old nephew and they all enjoy riding on my lap and think the chair is awesome. They also know I’m always there and if they hurt themselves I’m just a lap away, they just have to pick themselves up and climb up. Luckily I have use of my hands, so I’ve changed many diapers, bandaged many boo-boos, and have got to have a hands-on experience with my family, minus two legs. All in all, this experence has taught my whole family how people in wheelchairs are no different than anyone else, just people who get around in a sitting position. And it makes me proud when I see one of them walk up to someone in a chair and just strike up conversation and help them with doors or any need. Then is when I know this experience has been a positive in my life.

  4. Shawn Dean
    Shawn Dean says:

    Thanks, I appreciate that. Writing that post was pretty emotional. And thanks for sharing that special anecdote, it shows me a glimmer of my future in many ways. Take care.

  5. J.D.
    J.D. says:

    Shawn, your article was great. Sounded like it came from the heart! To me, sounds like you being the “sweet/kick. A&%” uncle is pretty much wrapped up!!!! Keep up the great work!!!

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply