Hello, and welcome to my blog, Parenting on Wheels. My name is Patrick Bohn, I’m 34 years old, and I’m married to the most beautiful woman in the world, Ashley Bohn. We’ve been married since August 8, 2015, and we welcomed our first child, Cora, into the world on October 20, 2016.
At this point, none of this separates my blog from one of the millions that already exist no parenting. But, there’s something I left out: I was born with spastic quadriplegia cerebral palsy. In short, this is a neurological condition that affects all four of my limbs and makes my muscles tight. I’ve had this condition since birth, and it requires me to use a wheelchair (primarily) and walker (occasionally) to get around.
While I’m fully independent, my CP has certainly made my life challenging at times. Now that I’m about to embark upon the most challenging experience there is—parenthood—I thought it would be worthwhile to chronicle our family’s experience. There aren’t a lot of resources out there regarding being a parent with a disability, but there is a lot of misinformation. Hopefully, this blog will be a informative, interesting, and occasionally funny place for people—both disabled and non-disabled—to learn about the unique aspects of being a parent (and expecting parent) with a disability.
I hope you enjoy reading this as much as I’ll enjoy writing it. If you have any questions or comments, feel free to contact me at patrickbohn@hotmail.com
The challenge of writing a blog is that if you stop writing, it becomes more and more difficult to just pick up where you left off, which makes you less enthused to write, which means more times goes by, which means it’s even harder to pick it up.
That’s what I’m dealing with right now. It’s been more than a year since I last wrote on this blog, and so much has happened (both personally, and in the world) that I really don’t even know where to begin. So, I decided to begin at well, the beginning, again.
My name is Patrick. I’m a 37-year old who lives in upstate New York with his beautiful wife, Ashley, and two wonderful children, Cora and Sullivan, and Banjo, the family dog. I have spastic cerebral palsy, which is why this blog exists. There are a million parenting blogs out there, but there aren’t a lot that talk about the challenges of being a parent when you have a disability.
That was a challenge when I was preparing to be a father for the first time, and feeling woefully unprepared. And it’s something I want to share with people, not only so people with disabilities can know that they are going to be amazing parents, but so that people without disabilities can see some of the things that people with disabilities deal with.
It’s been a long time since I’ve written something for this blog, which is unfortunate. We’ve had a lot of big changes in the past few months (a house!) that I’ll detail in future posts now that things have calmed down a bit.
But besides our sweet new domicile, there’s been a pretty impressive development on the parenting front, which, ironically enough, starts with a confession: For the first two years of her life, I’d never taken Cora to do something out of the house by myself.
It wasn’t that I never spent time alone with Cora. We’d have Daddy-Daughter days when my wife wanted to get out of the house, or if she had to work late, or if Cora wasn’t feeling well and needed to stay home from day care. But those days always took place in our apartment. Cora and I would play on the floor, or with her toys. We’d take a break for lunch, maybe watch a show in the afternoon following her nap. It was fun.
There are a bunch of reasons for this. We never really figured out a good way for me to “carry” Cora when she was too young to walk. And then, once she learned to walk, we had to contend with the whole problem of her not really listening to me, which sometimes led to problems when we took her places. Such as the time we all went to the science museum and she discovered my age-old nemesis, stairs:
Chill, people. I got her back.
And obviously, there were some places that just weren’t going to be doable because of accessibility reasons. A park, for example, is very hard for me because wheelchairs really aren’t designed to go on grass. Additionally, many play structures at parks aren’t designed for individuals with disabilities in mind, which not only presented a safety risk, but also cuts down on the fun aspect.
“This will totally work!” – No person in a wheelchair ever
But here’s the thing it took me a long time to admit: while it’s true that there’s a lack of accessibility in our society, that gave me a convenient excuse to just hang with Cora at our house. The truth is, I was always nervous to take Cora out on my own. You know how there are parent-shamers out there, who like to criticize parents for everything from giving their kids the wrong snacks, to their kids sneezing too loudly in line at a Target?
Well, I was terrified of being parent-shamed. I didn’t want someone looking at me trying to chase down Cora thinking that somehow I was an unfit parent because my wheelchair made it hard for me to follow a toddler into some small space, or up a flight of stairs, or across some surface not designed for a wheelchair (like, you know, grass).
I’d get embarrassed just thinking about having to ask someone for help if Cora got away from me. I’m really proud to be a father, and even more proud because I think I’m a pretty good one. But in my head, those other people weren’t going to see all the ways I was a great dad. They’d just see the ways I couldn’t do something. Even if they were understanding about it—after all, what parent *hasn’t* had trouble with their kid out in public—I just didn’t want to deal with it.
This anxiety meant that it was just easier for me to have Daddy-Daughter days in the confines of our apartment, where I could keep Cora relatively contained and happy.
Of course, not only was this not fair to Cora, it wasn’t exactly the most entertaining time for me either. We would play with toys, and on the floor, color pictures, and watch a movie…and then the next time, we could do the same thing.
This was just not a sustainable long-term plan. So, a few months ago, when Ashley was planning to go out for a day to herself, we decided I would take Cora out on an adventure.
Fortunately, we’d already mastered one of the bigger challenges: I could get Cora in and out of the car by myself. This was no easy task, given that my car was a pretty small Volvo. But it was basically the first step in going out, it was an important one.
But that still left a lot of planning to be done. As I’ve detailed before, parenting with a disability sometimes means you have to put a lot of thought into what, for non-disabled people, might seem like a simple act.
First, I had to think about where to take her. And there were a lot of things I had to take into account when considering places, such as:
Are there stairs—or other areas—Cora could get to that would make it impossible for me to reach her?
Would it be crowded? Crowds are tough for me to navigate through, so it would not be easy chasing after a toddler in a packed place?
Is the parking lot relatively safe? If Cora tried to get away from me, how soon would she get to the road?
Is there an accessible bathroom, in case I need to change Cora?
Would we be able to have fun?
Considering this was our first time, I decided to keep the stakes relatively low, and stick to lunch, rather than the park or a crowded inside space, like the mall or a museum. Even then, though, I had to go through quite a few places in my head before I landed on one that would work.
Italian Carry Out, our favorite Italian restaurant in Ithaca, is a cozy place on one floor, with a spacious parking lot where I could position myself between her and the area where cars drove. They had a big bathroom I could change Cora in, and the floor plan was level. I figured that if we went after Cora woke up from her nap around 2:30, we’d go in during the sweet spot between the lunch and dinner rush.
You can practically smell the accessibility—and the delicious wings
Plus, I have to be honest, the people at Italian Carry Out were the best. Ashley and I went in there a lot, and we were always greeted by friendly smiles. They even catered our wedding. I knew, even if I had trouble with Cora, that everyone there would be understanding.
So, with a location secure, we were good to go. That morning, my wife left to treat herself, and Cora and I did the usual Daddy-Daughter stuff. Then, when she went down for her nap, I started to prepare. I packed up her bag with diapers, a change of clothes, and enough snacks to feed an army battalion (more on that in a second). When she woke up, we got changed, and I was ready to go. Of course, nothing is that simple.
The first challenge was getting Cora to the car. Normally, we’re pretty laid back parents. If Cora is having a day where she just wants to cuddle on the couch and read books, we’re okay with it.
As it turns out, when she woke up, she wasn’t too pumped to go get pizza. This meant I was going to have to force things a bit.
This is where the snacks come in. Like a criminal loading up on cash to pay off corrupt cops in a noir film set in the 1940s, I had armed myself with Cheerios, a fruit bar, and some chocolate. Each of these foodstuffs holds a progressively higher spot in Cora’s hierarchy of snacks, and, unfortunately, it was clear I was going to need break into them early.
I quickly gave her the Cherrios, and this enabled me to get her out the door, while I made sure the dog didn’t escape. It also ensured she’d walk to the car safely and stand next to it while I loaded everything in.
The next step was getting her into her car seat. As I said, I know how to do all this, but like a lot of things I have to do, it takes me longer because of my disability. And one thing I’ve learned about toddlers is that they’re not very patient. So while Cora was initially pretty content with everything, things changed as I struggled with getting her snapped into her car seat. I couldn’t get my body angled correctly to squeeze into the tight space; it was tough standing over her while not leaning on her too much, and my hands (which also have CP) were struggling with the buckle of her seat. It was cold, and she didn’t have her jacket on. She started to struggle and cry.
I tried talking to her through the process: Didn’t she want to get pizza? It was going to be so yummy! And we could get meatballs, too!
Cora wasn’t having it. She kept struggling, and for a brief moment, I felt like just relenting. I really hate seeing my daughter upset, for one. But I was also feeling frustrated. This outing was being ruined because it was taking me too long to get Cora in her car seat. And it was taking me too long because of my disability. How were we going to have a fun time at the restaurant if I can’t even get her in the car?
This is one of those things I think able-bodied people don’t understand about parenting with a disability. The disability can affect everything. It’s not just the big stuff, like cribs or inaccessible buildings. Little things can become challenges, and become discouraging. Something that might only take an able-bodied person 30 seconds, had taken me close to five minutes, and I felt no closer to the end.
Ashley always always tells me that when things get frustrating, it’s good to take a step back and breathe. I decided to do that with Cora. I sat down in my chair, took a breath, and apologized to her. I told her I knew this wasn’t fun for her, but that if she’d just be patient, and help a little, daddy would get her in her car seat, and we could get pizza. I also promised her I’d give her the fruit bar for a car snack.
This seemed to work, and, with both of us calmer, I was able to (finally) snap her into her car seat. We were off.
Twenty minutes later, we pulled into the parking lot. Cora had been very content during the trip, and we talked about pizza while she ate her bar. Everything was going great.
Then we got to the restaurant, and things changed (again).
Cora wasn’t exactly being bad. In fact, she was being playful. But her version of playing was “try to move daddy’s hands every time he goes to unbuckle your car seat and yell ‘No!’ if he kept moving your hands.” The more I tried to get her out of the car, the more she fought. It was actually hard for me to struggle with her and keep my balance, and as it went on, I was getting frustrated again. First, she didn’t want to get into the car, now she didn’t want to get out? What was going on? I contemplated my options.
I couldn’t burn through my third and final snack yet. What if I needed that for the car ride back?
I tried to tell her all the yummy food we could eat that was inside. No dice.
I didn’t want to threaten to punish her. The whole point was to have a fun day out. Punishing her risked just triggering a meltdown, and we’d come too far for that.
For a brief moment, I contemplated just calling the restaurant, placing an order, and eating it the parking lot. But that would be giving up.
So, I called in reinforcements. Specifically, I called my wife. I put Ashley on speaker phone, and like an expert hostage negotiator, she helped coax Cora out of the car. From there, I was able to wrangle her in the door.
We were in!
Finally, the hard part was over. Once we were in the restaurant, the delicious smells hit her, and she got super excited when she saw the pizza.
Three seconds earlier, she was smiling, I swear
The restaurant, as you can see, also was set up perfectly for us. Cora had space to move around, but it was flat and level, with enough space between the tables for me to follow her. There was only one other person there, and we were able to enjoy a nice lunch without too much trouble from the nugget.
Once we had eaten, I loaded Cora back into the car, using the last of the snacks as bait. We drove home, thinking of the wonderful food we had, and waited for Ashley to come back.
If you’re still with me at this point, you’re probably asking yourself, “Did Patrick really write 2,500 words about taking his daughter to get pizza?” Yes. Yes, I did. Because honestly, fewer things have made me more proud of myself as a father. For almost three years, I’ve dealt with so many challengesregarding different aspects of being a father. And with the help of many, especially my amazing wife, I’ve been able to conquer everything.
However, this was something I had to do by myself. I had to do it in order to be the best father I could be. To make sure that there was nothing that I couldn’t do with Cora, nothing that she would miss out on. I’d be lying if I said there weren’t times I felt like giving up. But Cora and I worked together, and we knocked it out of the park. Taking Cora out to lunch was probably the biggest accomplishment I’ve had as a father with a disability.
But it also served to remind me of something. We still have a lot of work to do, as a society, to make public spaces more universal. Too many restaurants don’t have accessible entrances or bathrooms. Too many outdoor spaces are built without any thought being given to individuals with disabilities. Too many people are simply unaware of the every day challenges that come up.
Hopefully, as Cora gets older, and our family grows, we can see some of these things change. In the meantime, I’ll continue to chronicle the challenges and triumphs.
By now, you’ve likely heard the news that Stephen Hawking, the brilliant theoretical physicist, died earlier this week, from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
Unsurprisingly, Hawking’s death has resulted in people sharing their thoughts and emotions regarding his impact on their lives and his passing. However, some comments, such as this one, have been called out for being insensitive.
The tweet, in case you can’t be bothered to click the link, shows a picture of Hawking floating around in zero gravity, with text that reads, in part: “This is how I will always remember Dr. Stephen Hawking, freed from the confines of his wheelchair, with the biggest smile on his face I have ever seen…”
The bolded part is my own emphasis, and it’s this sentiment that I want to talk about. Like the author of the Men’s Health article, Andrew Gurza, I believe this comment was well-intentioned. But as I discussed in a previous post, intentions aren’t everything. You can’t just say whatever you want, and if it upsets people, shrug your shoulders and say “Well, I meant well.”
So let’s break down what’s wrong with this bolded part of this tweet:
Saying someone has been freed from something strongly implies that the thing they were freed from was a bad thing, and being freed is a positive. Don’t believe me? When I typed in the phrase “Freed from” into Google, and went to the News section of the results, the entire first page was stories about people being freed from prison.You also may have seen this story making the rounds: A man in an Elsa costume who unstuck a trapped police vehicle. The money quote: “After pushing for a minute or so, Elsa freed the transport van from its slushy prison.” (Hey, there’s that “prison” word again)
One of the definitions of the word confines is as follows: “the borders or boundaries of a place, especially with regard to theirrestricting freedom of movement” (emphasis mine)
So what’s the problem? The problem is, that for many wheelchair users, myself included, a wheelchair is, quite literally the exact opposite of what it’s being portrayed as. My wheelchair isn’t something I want to escape from. It doesn’t hurt me. It’s what allows me to carry my daughter on my lap, and pick her up out of her crib. It’s what allows me to help my wife around the house, and cook dinner. Why would I want to get away from that?
As far as a wheelchair restricting my freedom of movement, let me tell you a story. A few years ago, I was at a doctor’s appointment, and getting my wheelchair out of the back of my Volvo. The parking lot wasn’t level, however, and when I put my wheelchair down on the ground, it rolled down the incline, around a bend, and crashed into a dumpster.
You know what was restricting my freedom of movement at that moment? It wasn’t my wheelchair. It was the fact that my wheelchair was lying on its side several hundred feet away from me. You know what caused my movement to no longer be restricted? Someone from the doctor’s office getting my wheelchair and bringing it back to me so I could get in it.
Maybe you think I’m interpreting the tweet a little too literally. Maybe, you think, the sentiment isn’t that Hawking’s wheelchair was the confining thing for him to be freed from, but his disability.
That’s even more problematic, actually. Yes, my disability is technically what restricts my freedom of movement and prevents me from doing Julio Jones-type things (although my severe addiction to eating chicken wings isn’t helping either). Yes, it has made my life harder in certain ways. But it’s not something I’ve spent 35 years hoping to be “freed” from, least of all through death. I have no idea what happens after we die, but I respect others’ beliefs about it. I can promise you, however, that I’m not looking forward to dying because there could be a heaven where I’m not in a wheelchair.
To begin with, I happen to love being alive, with my beautiful wife, amazing daughter, and wonderful dog. I get to live in a world with the Roanoke Weenie Stand, and where not only did this happen, but it’s recorded on the Internet for all time.
Second, as Gurza writes, my disability is a huge part of my life. It has impacted my entire life, and how I interact with the world. I really hope, if there is indeed a heaven, and I do go there, that I’d bring my disability with me. It’s a major part of who I am.
Here’s the bottom line: perpetuating the notion that the idealized version of someone who has a disability is them without that disability is abelist. For those of you who don’t know, abelism is the idea that people with disabilities are inferior to people without them. This photo, from Melbourne artist Mitchell Toy, is an example of something I’d consider abelist:
No, this photo isn’t explicitly saying “Having a disability is worse than not having one!” But ask yourself why it was then, that of all the things the artist could choose to draw, Toy landed on: Hawking literally turning his back on his wheelchair and walking away from it. If you can’t see why I think that’s strongly implying that this non-wheelchair using version of Hawking is better off, well, we’re just going to have to agree to disagree.
A person with a disability is not automatically improved upon if we remove their disability. There might be some individual people with disabilities who feel that they’d personally be better off without one. But tweets like the one in the Men’s Health article aren’t talking about how people with disabilities feel. In fact, the author of the tweet even says as much when she writes “This is how I will always remember…” (emphasis mine). And while I don’t know this for a fact, I’m guessing Toy did not confer with Hawking before his passing about how he’d feel about a picture like that.
People can, of course, choose to remember someone however they want. And maybe Toy means well. But as I said earlier, good-hearted intent is not an impenetrable shield someone gets to hide behind. Abelism is abelism, whether you know it or not, and whether you intended it or not.
At the end of the day, having a disability is hard for me. That is, quite literally, why this blog exists; so I can have a place to vent my frustrations about the challenges that come along with it. But reading some of the reactions to Hawking’s death makes me realize that there are people out there who aren’t just empathizing with that and trying to help. They’re carrying around the view that my disability is something I need to escape from to have a better life—or afterlife, as it were.
And I’m here to tell them something very simple: You’re wrong.
Growing up with a disability, I spent a lot of time thinking about how I had to do things differently than able-bodied people. My routines for everything, from something simple like getting dressed, to cooking, to going to the gym, had to be done a little differently. Sometimes, doing something differently was frustrating, because it was more difficult, or time-consuming than it would have been had I been able-bodied.
This could become problematic. It was hard not to feel self-conscious sometimes, especially if I was around other people, and those changes made things more difficult for them. Sometimes, I’d get upset about it. But over the years, I got used to these changes and learned to accept them as something I had to do to live my best life.
When my beautiful wife Ashley and I found out that we were having Cora, I honestly started getting nervous. Here’s the thing: I was okay when the things I had to do differently for me, but I felt really self conscious about doing things differently with Cora. What if she got upset with me because of something I did differently? What if, as she got older, she resented me? Would she see what other fathers did and think to herself “My dad can’t do that. That’s not fair!” The last thing I’d want is my daughter to be mad at me because I’m in a wheelchair and it forced her to miss out on something that she thought was normal.
I remember expressing these feelings to Ashley one night. Ashley is my rock in a lot of these situations, and this was no exception. She assured me that, yes I was going to do things differently with Cora that she would. But that’s okay, because all parents do things differently, disabled or not. She assured me that Cora wouldn’t care about the things her and I do differently because of my wheelchair.
In fact, she went a step further and assured me that Cora was going to see my wheelchair as her normal. She wouldn’t see it as “I have to things a certain way because my Daddy’s in a wheelchair.” She’d see it as just the way we do things. In other words, it might not be the world’s normal, but it would become her normal.
The thing is, although I believed her, sometimes, with things relating to my disability, believing something to be true and knowing something to be true is a pretty important distinction.
That’s why the two photos I’m about to show you are so important:
The photo on the left is Ashley reading to Cora, all snuggled up on the couch. This is how Cora reads with most people.
The photo on the right is how Cora reads with me (95% of the time, at least. We also cuddle and read) She climbs up on my wheelchair’s footrests and we read facing each other.
As usual, Ashley was right. Cora’s not mad that reading with me is different than reading with reading with others. She doesn’t view it as anything different. She just comes up to me and says, “Daddy, I want you to read me this book. Don’t worry, I’ll move these footrests into the right position so I can climb on them. All done. Look! It’s the Five Little Pumpkins!” The way we read is different than the way she reads with her mother, but it’s still a perfectly acceptable way to read, in her mind. It’s her normal.
And the thing is, I’m not self-conscious about it. I actually like that Cora and I have our own way of reading together—and that it involves her using my wheelchair. It makes me feel confident that the two of us are going to find ways to make lots of things our own.
I’ve waited way too long to write this post, and while some of the usual busy parenting caveats apply (true story: the other week, I fell asleep on the floor at like 7:30 p.m.) the truth is, this is a really hard post to write, and it’s taken me awhile to get my thoughts in order for it. But I finally feel ready to put it all out there.
Just before Christmas, the pastor of our church, Kirianne, reached out to Ashley and I to ask us if we wanted to be in the live nativity scene outside the church before the Christmas Eve service. This is a pretty cool honor, so we immediately agreed. It was a pretty simple assignment: We had to stand outside the church for about 30 minutes and greet people as they came in. We were very excited. Honestly, our only concern was whether Cora—who was playing the baby Jesus—would be okay spending 30 minutes in a manger outside in the cold.
That night, we drove to the church and changed into the required garb (plus extra clothing and pacifiers for Cora.) We stood outside, on the grass, in the unseasonably warm weather and greeted the wonderful members of our church.
With about 10 minutes to go before the service began, we were approached by two women who we didn’t recognize. They stopped to talk to us, and were very friendly. Then, we had this exchange:
Woman: So that wheelchair, is it part of the scene? Me: What do you mean? Woman: I didn’t know if you used it, or if it’s just a chair you’re sitting in it to rest
At this point, I was kind of unsure if this woman was just joking around with me or not. As my wife will tell you, I’m not above joking about my disability. But the next part of the exchange was a game changer.
Me: Oh, no, I need it, I’m disabled Woman: What if you didn’t need it? Me: What do you mean? Woman: Do you mind if we pray for you?
At that point, it hit me. This woman was a faith healer, and she wanted to pray that I would no longer need to use my wheelchair. I’ve dealt with a lot of strangers coming up to me and saying weird things before, but I’ve never had something like that happen.
Honestly, I don’t even remember exactly what happened after that. We politely demurred on the whole “pray for me” thing, and eventually, they moved on. We continued greeting visitors, went to the service until Cora got fussy, and then went home to wait for Santa (spoiler alert: he came)
At the time, I didn’t really think much of the encounter beyond “Wow, that’s a new one?” But as time went on, I started to feel more uncomfortable about the entire ordeal. I wasn’t angry at the woman, per se. As I said, I’ve had a lot of people say strange stuff to me. If I let every instance of it bother me, I’d spend a lot of time being angry.
The more I thought about it though, the more I realized that this exchange got to the heart of what I believe is one of the fundamental questions about being disabled: How do I balance the following two truths?
There’s absolutely nothing wrong with being disabled, I’m not any less of a person, husband, or father because of my disability, and I’m not going to let it stand in the way of me leading my best life.
Being in a wheelchair is stressful, hard, and expensive, and sometimes, I just wish I wasn’t disabled.
Let me further explain both those statements. Being disabled has not stopped me, or countless others, from doing all sorts of amazing things. I graduated from a great college (with honors!) and then earned a master’s degree from that same institution. I’ve worked in journalism and earned awards with one of the country’s leading national newspapers (scroll to 2008). I had a great family growing up, and now have my own great family: a beautiful wife, a beautiful daughter, and a very affectionate dog. I now work for my alma mater, and love my job. I get recognized for my random, esoteric hobbies. The best college football coach in the country follows me on Twitter. My life is pretty awesome.
My beautiful girls
But that doesn’t change the realities of statement two. Being disabled is really, really, really hard. It’s challenging having to modify everything to create a livable world. It’s really hard during the winters—which in Ithaca, last for 6 months. Finding accessible housing is nearly impossible. Getting wheelchairs repaired is a herculean task. Everything is way more expensive. There are times I just wish I didn’t have to deal with it.
Now, you might be thinking: Patrick, after what you just said, can you fault this woman for wanting to pray so you didn’t have to deal with all that? If you sometimes don’t want to be in a wheelchair, what’s wrong with her not wanting you to be in one?
The answer to that question is yes, for one very specific reason: Agency. I have the right to get frustrated about my disability and think “How much easier would life be if I wasn’t in a wheelchair” because I’ve spent the last 35 years being in a wheelchair, dealing with all of these challenges, having them affect my life, and then trying to come up with solutions. That gives me the right to be frustrated by these challenges and, however briefly, acknowledging the reality that, if I wasn’t in a wheelchair, my family and I would have a lot more housing options than we do now, and that would make life easier.
This woman, on the other hand, had spent about 35 seconds with me before deciding “I bet this guy would be happier if he could walk.” She doesn’t know a thing about me, which means of course, that she wasn’t really thinking about me. She just saw a guy in a wheelchair who, in her mind, needed “fixing.”
This is a really awful mentality to have, even if it’s grounded in the belief that you’re doing something to try and help someone. My disability does not define me, but it is a big enough part of my life that I feel like, if you’re saying my disability needs to be fixed, you’re saying my life needs to be fixed. And I can promise you, my life does not need fixing.
For this woman to act like it does was wrong, and hurtful. And it was especially hurtful because she did it in front of my daughter; even though Cora had no idea what was going on.
The challenge of balancing my frustrations over certain aspects of a disabled life with the knowledge that my life is pretty great is one that I’m going to have to explain to Cora—and our future children—someday. And to be honest, I don’t know exactly how that conversation is going to go. Ashley and I have already talked about it, and we know we’re going to tell our kids that there’s nothing in the world wrong with their father, and that there’s nothing he can’t do when it comes to being a parent. Ashley has often said that our children are going to think I’m Superman, and I’m pretty sure Cora already does.
I’m also sure that at some point, Cora is going to see me encounter something that, because of my disability, makes mine (and perhaps her) life a little more challenging. And she may very well hear me express frustration about being disabled.
But that’s okay. Because, unlike this woman who tried to heal me the minute she met me, I can take the time to explain to Cora why I’m feeling the way I’m feeling, and that it’s okay for me to feel that way sometimes. I can help her understand that my disability isn’t a problem someone else needs to fix, just a challenge that I (and our family) have to handle, together. And we will.
After a (too long) hiatus, and lots of changes, Parenting on Wheels is back! A lot’s gone on since my last post. Cora is 14 months old today, and she’s gone through a lot of changes. She’s developed a real personality, and you can see her mind working things out. I think the moment it hit me was when, at the end of a trip, she went digging in her travel bag, pulled out a bag of yogurt melts, brought them over to me, and looked at me expectantly. When she was really little and hungry, she would just cry. Now, she problem solves.
She’s also learned to go through her progressions like a mini Matt Ryan. This morning, Ashley had put a bagel in a bag for Cora to eat in the car on the way to daycare. But Cora wanted it right away, because well, she loves to eat. When my wife wouldn’t open the bag for her, she walked it over and tried to get me to do it. Had Ashley not scooped her up, I’m pretty sure she would have tried the dog next.
She especially likes Italian Carry Out (just like Daddy!)
But to me, the biggest change in her over these past few months has been physical. Cora started walking when she was just nine months old. And I can tell you that watching her take those first steps was truly one of the most beautiful things I’ve ever seen.
It’s probably hard for most people to understand, but because everything physical is more difficult for me to do, I’ve spent a decent amount of time as a father worrying about Cora’s physical development. Cerebral Palsy isn’t hereditary, so this wasn’t a worry that she would have CP. It was more like a hope, that my daughter would be able to enjoy doing all the physical things—running, jumping, climbing—that I wasn’t really able to.
So every time Cora hits a physical milestone, whether it’s crawling, pulling herself up to standing, standing on her own, walking, or running, I can actually feel myself getting relieved. I’m thinking to myself: “Yes! She is going to be able to do that!”
Even when she’s doing something dangerous—like climbing up on a random toy—it’s like there’s two people inside of me. The super-protective father in me is saying “What are you doing? You’re going to get hurt!” But the disabled protective father inside is secretly proud at what she’s accomplishing, in large part because she’s doing things I couldn’t do.
The other week, we got a note from Cora’s daycare. They were working on “ages and stages” and they told us that Cora’s physical development was already equal to that of the next age group’s. When I heard that, I was ecstatic. Not only was she developing, she was doing so ahead of schedule.
And then something else amazing happened. A week ago, Cora’s daycare sent us this photo of her playing outside in the snow.
You’ll notice, of course, that she only has one shoe in this photo. Are we bad parents who send our child to daycare only partially clothed? Of course not. According to her teachers, Cora was so determined to climb the slide herself, her shoe came off. Undeterred, she still insisted on going down the slide. She’s utterly fearless, I’m telling you.
Why is this so important to me? Well, when you’re physically disabled, the challenges aren’t just physical. They’re mental as well. Sometimes, you don’t feel confident that you’re going to be able to accomplish something physically. I absolutely felt that way when I was growing up, and sometimes, I still feel that way.
It’s something Ashley and I have tried to be really cognizant of. We want Cora to know that just because I have CP, there’s nothing we’re not going to try as a family. About a month ago, we went to get a Christmas tree. In years past, we would just go to Home Depot and grab one (they gave free popcorn and hot chocolate). But this year, we went to a Christmas Tree farm, where I climbed on an inaccessible tractor, rode into a field, and teamed up with Ashley to saw down the family tree by hand. I wouldn’t have dreamed of doing that five years ago.
Call me Clark Griswold
And now, seeing that my daughter has no reservations about climbing on things, or going down a slide with just one shoe, it makes me so proud, it’s hard to really describe. Just knowing that she’s not going to be held back by anything is such an amazing feeling.
Granted, this unbridled physical ability comes with some drawbacks. Cora’s already faster than me, especially in the close confines of our apartment, which means when she’s getting into mischief, she can dart down the hallway and it takes me a second to track her down. But all in all, it’s a tradeoff I’m willing to make.
It’s a common saying among parents that we want better for our children than we had for ourselves, and I think that’s what a lot of this boils down to. Don’t get me wrong here: There’s nothing wrong with being disabled, and I’ve done my best over my 35 years to not let it limit me. But the physical challenges it’s presented have sometimes been frustrating. So when I watch Cora not have to deal with challenges, and grow stronger and faster, it fills my heart with immense joy. And I can’t wait to see what she does next.
So, the Americans with Disabilities Act turns 27 this year. And that’s something worthy of celebrating. Now, before you point out that this might seem to be an odd thing to celebrate, let me quote a scene from the iconic television show Sports Night, where two characters are debating celebrating Bobby Thomson’s “Shot Heard Round the World”
JEREMY: It’s the 49th anniversary. DAN: And deserving of a tribute. JEREMY: A 49th anniversary tribute? DAN: What, there’s a law it’s got to come with 5s and 10s?
Dan, being the best character on the show, knows that we don’t just celebrate some anniversaries. We can celebrate all of them. Because, the ADA, while being far from a perfect law, has had a major impact on my life. Especially now that I’m a parent. For example:
This is me and Cora, riding on a carousel at a local park. Now, you should take a close look at this picture. Because if you do, you might notice that, oh yeah, there’s no ramp or handrails on this thing. The only reason I was able to climb up here with Cora is because I had my beautiful wife Ashley helping me get on while my brother held Cora.
This is the kind of stuff that made me—and still makes me—really nervous about parenting. It’s easy to be a good parent when I have my support system helping set me up for success. But there’s no way I could accomplish something like this if I was spending the day alone with Cora. That’s really sad to think about, actually. One-on-one bonding time is so critical, and the fact of the matter is, our society was not built by people who cared all that much about accessibility. As a result, there are a lot of places I can’t go, and a lot of experiences I can’t partake in, because they’re not accessible. The ADA, for all its flaws, tries to correct that as best it can.
If you’re still reading, a question might have popped into your head by now. You’re probably wondering why I picked something that’s not accessible to highlight the ADA, which is about making things accessible. Here’s the truth: It’s pretty easy for me to come up with examples of things the ADA makes easier for me as a parent. Curb cuts, ramps, elevators, parking spaces, the list goes on.
But I want you to take a look at this photo:
This is a group of people working to build a ramp to that same carousel you see above, thanks to groups like the Friends of Stewart Park and Play by Design. Now, this is not something that’s being done because of the ADA. It’s something that’s being done because a group of people got together, and decided “Hey, this thing that disabled people can’t partake in? They really should be able to do partake in it.”
As I said earlier, the ADA is not a perfect law. There are things about it I find counterproductive. But at its core, to me, the ADA isn’t just a law that says businesses must do X, or that the government will provide Y. It’s an idea. An idea that, just because you’re born disabled, you shouldn’t be unable to do basic things like get into a building, or use a bathroom in a restaurant. The spirit behind that idea is what causes people to decide “Hey, let’s make this thing accessible even though we don’t have to, so someone in a wheelchair can use it.”
That’s what we’re celebrating, and that’s what the ADA means to me (and Cora!)
Today is Father’s Day, which is something I’ve been looking forward to since well, 3:12 in the morning on October 20, when Cora was born. And of course, I’ve spent a lot of time with her already today, soaking up all the smiles and cuddles I can. So far, it’s been a great day, and it’s not even noon.
I’ve talked a lot in this space about how nervous I was to become a father. But I haven’t talked enough about the reason I was confident that I was going to be a great one. And that reason is simple: For the first 33 years of my life, I had an apprenticeship in fatherhood at Tom Bohn, Incorporated. And when you learn from the master, you pick up a few things.
My father was, without a doubt, the best father you could ask for. Want proof? I’m going to show you a picture, which won’t seem like much at first. But from this picture, you’re going to learn why my father is the greatest man I’ve ever met, and the reason I’m the father I am.
“Come on Welch! Throw it to the tight end!” – Dad
There it is. Now, I know what you’re thinking: This was just another excuse for me to post a picture of Bomber football. Fair point. But it’s so much more than that. Let’s break down why this photo proves my dad is the best.
He passes on his passions: As hard as it is to believe, I was not born a Bombers fan. It’s something I inherited from my father, who started taking me to games at Butterfield in 1988 (a magical year in Bombers history), when I was only five years old.
He took me to nearly every home game from kindergarten to college, and we still go to games today. Sitting next to my Dad as we watched the Bombers has always been one of my fondest childhood memories. And this fall, I’m going to pass on the passion to Cora, just like he passed it on to me.
“Seriously! The tight end!”
He’s always wants the best for his children, and he’ll do whatever it takes to make that happen: As you can see in this picture, my father and I are sitting at the top of the stands at Butterfield Stadium, which is a view second to none in college football. And as I’ve alluded to, although I love Butterfield, it straddles the line between mostly inaccessible and completely inaccessible, mostly due to the lack of handrails in the bleachers.
But my father would be dammed if that meant we weren’t going to get the best seats in the house. He’d always take my arm and let me lean on him so I could sit wherever I wanted. Forget the bottom row. And the weather wasn’t always as amazing as it was in this picture. He’d walk me up those bleachers in a snowstorm, just because I begged him to let me sit near the pep band. (Which was awesome. Thanks Dad!).
Now that I’m a father, I know I’m going to do everything I can to make sure Cora has the things she wants (Well, except for a pony. Those are expensive, honey.)
He always pushed me: Even though it would have been easier (and in retrospect, safer) to sit somewhere else, my father knew that, in addition to providing a better view, getting to the top of the bleachers would require me to well, walk to the top of the bleachers. And that’s no easy task for someone with Cerebral Palsy. But my Dad never let me use my disability as an excuse not to do something. He knew that all the effort I put in was going to pay off in the long run. If I wanted to sit up with the band, or the very top row, I was going to have to work for it. Not only did that lead to that great picture you see, it’s carried over into everything I do, and it’s made me a better father.
He always puts his family first: My dad likes going to Bombers games, don’t get me wrong. But I loved going to Bombers games. In fact, it was probably my favorite thing to do in the world. I’m sure there were Saturdays when my Dad was tired, or busy, or not feeling well, and he just wanted to stay home. But he never once told me we couldn’t go to a game if I asked. Because not only did he want me to have a great day, he wanted to spend time with me.
I think that’s the biggest thing he’s passed on to me. I can’t tell you how many times I’ve declined to go somewhere with friends because I was planning on having family time. As my DVR can attest, I watch a fraction of the TV I used to, because I’m too busy trying to teach Cora how to eat puffs, or playing airplane, or singing songs. Spending time with her is the best part of my day, and I owe a lot of that to the fact that my Dad always made it clear that spending time with his children was the best part of his.
So on this, my first Father’s Day, I’m thankful not only for the beautiful family I have, but for the man who taught me how to be a father.
Being a parent with a disability comes with its fair share of challenges, one of which is people frequently assuming what I am capable of. I’ve been disabled since birth so you can imagine what 35 years of assumptions look like but as a parent, it strikes a different chord. Whether it be people assuming I am not the father, that we had to go through fertility treatments, that I can’t take care of our baby, or many other things, it doesn’t feel good and shouldn’t happen.
Once, when Ashley and I took Cora to the ER, one of the staff members asked Ashley who Cora’s father was…as I was sitting right next to her, as I had been for 45 minutes. As Cora grows and begins to understand more about the world and what people are saying, I can’t help but worry about how we will handle it all.
I want to talk about something that happened to Ashley and me a few weeks ago. Something that has probably happened to a lot of parents with disabilities. Something that really shouldn’t be taking place in 2017.
It was a Sunday. Ashley was with Cora, shopping in town. Normally, you have to tear me away from my wife and baby girl on a weekend, but on this particular Sunday, I was working, because it was Ithaca College’s Commencement, and in my office, that means it’s all hands on deck.
After I was finished for the day, I drove to meet my girls and met them in the parking lot of one of Ithaca’s fine stores. It was then that Ashley told me what had happened just a few minutes earlier. Someone in the store, who had known me for a long time, and who recognized Ashley and Cora from the hundreds of photos I post of them went up to them to say hello.
Who wouldn’t say hi to these beauties?
The conversation started normally. Pleasantries. Compliments. Then, this person turned to Cora and said the following:
“And you must be the miracle baby!”
Now, in a former life, I was a professor. So, before we continue, let’s pause for a lesson. If you know me, and you’ve read this blog, you know two of my favorite things in the world (besides Ashley, Cora, and Banjo) are Ithaca College Football and Julio Jones. So I’m going to use those two things to teach you about miracles using two videos.
In the final seconds on the 2014 Cortaca Jug, the annual rivalry game between Ithaca and Cortland State, Ithaca was clinging to a three-point lead. Cortland was out of timeouts, so they had to rush their field goal unit on to the field.
There was chaos. There was confusion. There were people frantically running everywhere. There was a fumble. In short, lots of stuff went wrong for Cortland on this play. But somehow, despite all this, the Red Dragons turned disaster into triumph, and a game-winning touchdown. That is a miracle (or a nightmare, if you’re a Bombers fan).
In the second half of the 2016 NFC Championship Game, the Atlanta Falcons had the Green Bay Packers on the ropes. They were up 24-0 when league MVP Matt Ryan dropped back to pass. He threw to Julio Jones. This was the result. That, dear readers, is not a miracle. That’s someone combining size, strength, and speed to achieve a goal. In a word, that is awesome.
When my wife heard this person call Cora a miracle baby she was nearly speechless. Sure, there were a lot of moving parts to the whole thing, but the end result didn’t surprise us any more than Julio surprised the 74,000 people in the Georgia Dome.
It gets worse. Rather than just politely walking away, this person then asked my wife if we were afraid of passing my Cerebral Palsy on to Cora.
My wife, to her credit, handled this second question with a lot of grace. She politely explained that CP isn’t hereditary, and that it had never crossed our minds about Cora having a disability.
Look, I understand there’s a lot of things that people don’t understand about disability. This makes sense. Disability is complicated. Heck, there are things I don’t understand about my disability. But one of the things that disabled parents face is the misconception of others, that we’re somehow less able to be parents, or that everything relating to parenthood is a struggle for us.
And don’t get me wrong. There are certain things that are a struggle. There are legitimate fears I had before Cora was born. But these comments struck a nerve with me and my wife. This was 2017. Al Gore invented the Internet like, 25 years ago. How could this person have such a lack of understanding about, not just how disability works, but also what’s are acceptable questions to ask about people with disabilities.
A quick primer: No, CP is not hereditary. And don’t ever call a disabled person’s baby a miracle baby (unless they’ve given you some prior indication that it’s okay to do so.)
Much like anyone else in the world, we are all different and have different capabilities. You can’t and shouldn’t assume that because someone has a disability, that they are infertile, unable to conceive a child, unable to live independently, unhappy, uneducated, or anything else for that matter. I could write about book about the assumptions that have been thrust upon myself personally. (For the record, I can walk, talk, I’m educated, I am married, independent, happy, successful, employed, hilarious, good looking, incredibly humble… the list goes on and on.)
I started this blog to educate people about the major challenges of being a parent with a disability. But I also started it to share my personal thoughts, feelings, and emotions about being a parent.
And the words of this person have stuck with me for weeks. Thankfully, Cora is too young to understand what people are saying. She also has no idea that I’m disabled. To her, all daddies have wheels.
Even though my wheelchair is her favorite toy.
One day, that’s going to change. Cora’s going to hear the things people say, and we’re going to have to have difficult conversations with her. I have no idea how those conversations are going to go.
But I do know that Ashley and I don’t ever want Cora to think that she’s somehow different just because her daddy uses a wheelchair. We want her to know that, from the second we decided we wanted to have a child, we never doubted it was going to happen, and that our child would be amazing. And my CP wasn’t going to stop that.
disability, but there is a lot of misinformation. Hopefully, this blog will be a informative, interesting, and occasionally funny place for people—both disabled and non-disabled—to learn about the unique aspects of being a parent (and expecting parent) with a disability.
Thanks, and keep on wheelin’!
This is me and Cora, riding on a carousel at a local park. Now, you should take a close look at this picture. Because if you do, you might notice that, oh yeah, there’s no ramp or handrails on this thing. The only reason I was able to climb up here with Cora is because I had my beautiful wife Ashley helping me get on while my brother held Cora.
Parenting on Wheels 