When Special Needs Parenting is Like a Trailer Hitch
John Fela
August 24, 2020

Last summer I wrote both a blog piece and did a Facebook Live video for Not Alone discussing our family’s recent foray into the world of camping. When I shared our reasons for trying this particular kind of vacation out, I explained how challenging our experience travelling with our autistic son Christopher had become at times. It really had nothing to do with our desire to travel, as we loved going on adventures with our son, but some environments, like the water park resort he loved so much he would refuse to go to sleep at night, therefore meaning that his parents would get no sleep and had no energy to be with him the next day, had become too challenging for us and so we had to come up with something a little more easy going and flexible. So my wife decided that camping might be a good choice, which, although it sounds like a lot of work, and it can be, still allowed our son to make as much noise and stay up as late as he wanted without worrying too much about keeping the neighbors awake. This started out ok in the beginning, but then we realized how challenging it was to go to the bathroom in the middle of the night, especially when the bathroom house was too far away or was just too dirty to use. Finally, we agreed that while staying at hotels and theme parks wouldn’t work, camping was just too far on the rustic side, and so we settled on getting ourselves a camping trailer, specifically a nice shiny Airstream trailer, with all the comforts of home, to take with us on the road.

This decision has all been very exciting for our family, and there is nothing like the experience of watching our son smile and giggle and jump up and down when he watches videos we show him of the trailer and different people travelling all over the country. He even spelled out on the communication app on his Ipad the name “Gopher”, as in “go far” for our new tow vehicle, and “Baby Shark”, like the popular kids song, to name the Airstream. My wife, capitalizing on his interest, ordered a variety of items to use in the trailer such as towels, throw pillows and such with the name Baby Shark personalized on them. But the level of excitement grew exponentially this past week when I came home from a late night at work and as my wife was putting my son to bed, she threw a rather intense question at me: ‘Would you like to go to Canada next week?”, and I knew instantly that she was referring to a trip we had discussed to an RV dealer in Ontario that many had suggested we use to get our vehicle properly hitched. The question initially scared me, as I was not in any mindframe to make the drive to another country when i was just finishing up my teaching year and I would need to get an emergency passport to be able to make the crossing, but in my heart I knew it was what I have to do. You see, I knew only one of us could go, since the other would have to stay home with our son, and there was no way I was letting my wife drive by herself, so I mustered up my most confident yes.

Up until this point, I felt this was all fun conversation in the family, and while we decided to rent a trailer to try it out a couple of times this summer, I didn’t expect that our decision to purchase a trailer would come so quickly, but that’s just how things fell into place. We could not, of course, own or even rent a trailer without getting properly trained on how to hitch, move and operate it, so we chose to attend an RV training school for a few days in Indiana. In order to attend the school we would have to bring our own trailer, in this case a rental, before our new purchase gets delivered to the dealer, but we would be responsible for getting it there. That is how I found myself taking the 600 mile drive from northern Illinois to London, Ontario, to get a top of the line sway control trailer hitch installed on the car. The entire drive there I had several things swirling through my head, mainly that I couldn’t believe I was actually making this trip on  short notice, but more importantly the cold hard fact that I had no idea how to do any of this. I had no experience towing anything, never owned a trailer and never learned how to properly maintain one; I had the best intentions but flying blind nonetheless. 

With the amount of free time I had for the couple of days I was there, I did a lot of reflection on why I was doing this after all, why me and my wife chose as parents to get the trailer so our son could travel more easily, and what it meant for me to admit how much I didn’t know. It seemed to me that the experience of learning how to hitch and tow a trailer was a lot like my journey as a special needs parent, and in reality it was the perfect analogy for our lives. So here are some takeaways from my time in relative isolation north of the border, and I hope that some of these may ring true for you on some level as well:

This was not the vacation I planned for. 

Whenever I thought about places I would want to go with my family, the typical large tourist destinations came to mind. But when it became clear that our son would have difficulty in large, crowded, noisy places, or that there were legitimate concerns for his safety, or even the fact that he probably could not (and we still have not) gone on a plane ride, life became different. So we changed our perspective on not just what was possible but more importantly what worked for our son and family. That evoked some mourning on my part, as I had to surrender my previous expectation of what this part of our life would look like, but ultimately know that I could still have an expectation of fun and joy with my family. Just like our regular life as special needs parents, we may have had a different expectation for who or what our son could be, but regardless of his condition, we never stopped being a family, loving our son and finding joy together.

I had to admit I had no idea what I was doing.

I’d love to say that I am a ‘man’s man”, knowing all about cars and trucks, trailers and all forms of mechanical things, with tons of knowledge passed on by my father who coached me the entire time. The reality is that I grew up a city kid who was never really into how things worked, let alone fixing them, and most importantly, even though I always loved being outside I never learned much about how to live outside camping style. Going to the RV center and having the technician walk me through the process of how to assemble and disassemble the parts of the hitch was quite honestly very confusing (maybe why I decided to take a 20 minute video of him). As humbling of an experience as it was, it was not unlike my early days as a special needs parent, realizing that although I may have studied to be a typical parent and even with all of my years of elementary school teaching, nothing could have prepared me for this. The only thing for me to do was to become really humble, admit I didn’t know what I didn’t know and ask for a lot of help. But I also knew that I wanted to learn how to do the job and do well, and so I listened, took notes in my head and on paper (or video) when I could, and trusted that the more hands on experience I had the better that I would become. 

I have anxiety over what others may think.

There is no one in my community who owns a trailer or does trailer camping in general, except for our former neighbors who moved away and now do it full time, so the idea of parking one in driveway (even part time), makes me wonder about the opinions it will produce. At the same time, being a real newbie to this whole world, I am equally concerned with being around people much more experienced, and what they may think or say if I can’t park the darn thing right. I am out of place where I live and also out of place with people who do these kinds of trips regularly, and so do I fit in anywhere? Then again, how many times have I felt that exact way as a special needs parent, or been concerned because that is the experience my autistic child would have in the world? I still face the reality that my child is different than many of the others on the block, at the playground, at church and many other places; do I define my child’s value or worth based on how different he is? No, of course not, and so I can not let the opinions of the world affect my everyday reality with my son, or the things that we all enjoy together (and suffice to say, we are the only special needs family that we know who is doing this camping thing at the same level!).

I have hope that this will all work out.

The positive outlook on my face still conceals my grave fear that something unexpected or very challenging would just somehow happen and make this all blow up in our face. I worry that after trying this for a month or two we realize it’s just not for us, that we can’t do it and it’s better to just go and try something different. I have hope and faith that I will learn what to do to manage the trailer, be able to do it and do it well, but that also requires trusting myself and believing that if this is God’s will for my family it will happen. But I don’t know that for sure, just like when I became the parent of a special needs child, I honestly don’t know if this will all work out or not. But I do know that I am not alone, I have my wife right next to me who loves and supports me, many friends who support me, and lots of teachers, therapists and professionals ready to jump in and help. Most importantly, I have my deep Christian faith that lifts me up and strengthens me in my most difficult hours, and so with that I move forward with the confidence that I can be a good parent, and the competent owner of a trailer.

Everything we are doing is for our son’s happiness.

I began this piece with a flashback to our earlier experiences doing tent camping, which I never would have done if traditional vacations with our son were generally possible. The journey into the rental and eventual purchase of our trailer was only motivated by the fact that since we have a special needs child some things are made more complicated when you sleep outside, but having a trailer makes some of those issues much more manageable, if not eliminate them completely, and we believe that this will just make our experience doing something our son really loves possible. It was not my first choice as a vacation plan, but my son’s happiness is, and so in reality this was a no-brainer, as nothing compares to the smile on his face doing what he enjoys. Like every day that my wife and me and parent him, we do it all for his ultimate joy, success and happiness, and have no regrets for the lengths to which we would go to provide that for him. I can force myself out of my comfort zones, push myself to learn new things, ask for help when I need it, lean into my wife for support, and pray to my great God in heaven that my son can be the happiest boy he can be.

I don’t know how much of this you can personally relate to, as the world of RV camping, trailers, and hitches may not be your thing, just as it wasn’t mine, until I got called to something new and different. I hope as our family begins this new adventure that you would keep us in your thoughts and prayers as we hit the road this summer, and I pray you would also be safe and happy this summer wherever your journey takes you. My hope also, is that you remember that only you can define your family’s experience of happiness, and that you would find that one joyful thing you can hitch your child’s dreams to.