Are You Checking Out as a Special Needs Parent?
John Felageller
August 25, 2020

In our small home, we have a few different rooms that serve multi-functional purposes, as is the nature of just living in this kind of space. The kitchen has a dining area attached to it that makes it essentially one large room, the third bedroom is a guest room/office/library, and then we have a family room that serves as my son’s playroom, music and TV room. Tucked away in the corner of this room is a small table and two wicker chairs, which I like to claim for my own when I’m in there watching my son while playing. I always make sure to bring my laptop, as I find it’s rather convenient to sit and answer emails, check Facebook and do a variety of teaching related items like grading or planning. My son sits and plays on the rug with a few of his favorite toys, maybe beats on his drums or pounds the keyboard a bit if he feels like it, but usually sits watching his favorite shows streamed online to the TV. I am being a great parent spending time with my child while I get some work done, yes, a parent who is present with his special needs child and can also focus on work related tasks. When my son gets bored and decides to leave the room and go to another part of the house, I always dutifully follow him around, and then upon returning to the family room, I go back to my table. This setup is great, I think to myself, it’s just like my favorite table at the library I sit at doing the same things on my laptop, with no one to bother me or concern myself with. I sit and reflect on my situation as I write this, realizing that I may not be what I believe about myself, as a little introspection forces me to consider, am I the best parent I could be, or am I really just checking out? 

There are many reasons why I can defend such behavior, all of them much too familiar to the special needs parent, and unfortunately I feel, much too easy for any of us to use as an excuse to just “veg” or to not really be present. I do after all, work very hard in my classroom teaching students with a variety of emotional and behavioral issues, on top of having the normal academic struggles. I am, like everyone else, entitled to a little me time, watching or listening to something however mindless, so that I can experience the same level of entertainment that other adults do. But do any of those adult level problems that I struggle with on a daily basis have anything to do with the responsibility I have to parent my child? While I am pouring all of my energy and dedication rightfully so, on all of the young people I teach, doesn’t my child equally deserve my attention? While I am sitting at my table in the family room doing a variety of tasks, including yes, writing this blog, shouldn’t I be stopping all of this and just interact with him?

I may be exaggerating a little bit here, especially if you know my child, who does in fact work very hard all day at school and then therapy, and really enjoys just sitting on the floor in front of the TV while he half pays attention to a show and engages in simple play and “stimming”. He really doesn’t seem to be bothered by me working or vegging or whatever it may be, and he isn’t the type of child who asks to play or share with what he’s doing. The issue really then to me, beyond what my child may be asking or even wishing for me to do, is the choice that I’m making to not engage with him, and more importantly, knowing that I’m not. It is the same knowing that I have when I pull out my phone incessantly when I need to be paying attention to my family, moments when my loved ones are right in front of me and I replace their faces with a screen. Those times when my son is playing at the park and when he seems distracted enough on the playground equipment that I slide my phone out to look at any number of random things that I scroll around on. When my son is demonstrating he is clearly bored by putting his hands on anything and everything and I repeatedly command him “No!” as opposed to redirecting him in a positive way and actually engaging with him. 

While I pondered my frustrations with my behavior and whether or not I was actually in the right, at least some of the time, with regards to my behavior, I started to reflect back on an experience I had several years ago as a home health aide with a child with cerebral palsy. I was between teaching jobs and needed a way to bring in some income, but also wanted to do something that I could at least have some connection with personally. My experience with the family for the several months that I worked there was both inspiring but also taught me a few good lessons about how a healthy family with a special needs child does life. The mom worked as a teacher and the husband had quit his corporate job to become a stay at home dad, which was actually my first time seeing that dynamic in action. The dad worked really hard to keep the house together and care for the disabled son and also his typical male sibling, which meant dad did pick ups and drop offs, and when the boys got home from school it was dad in the kitchen. When mom eventually got home, she visited with the family, sat down for dinner, relaxed with some TV and the newspaper, but even while I was present with their son, which many times meant that I just assisted with feeding or the bathroom, I never considered mom not present. 

What made me feel the way I did about that mom and those parents in general, that I could watch them sit and take breaks, watch TV, read the newspaper, and even see the dad play video games with their typical son and believe that it was normal? I think this is the razor thin line that we as special needs parents walk everyday, the balance between engaging and resting, between knowing when you need to be involved and when you can step back. There is nothing wrong with taking a break, as long as you don’t allow the break to “take you” so to speak, to not let your rest time become mindless distraction, as tempting as that may be. We can now allow for true self care to take place, for space to refill and replenish in truly healthy, positive outlets. This is the awareness that reminds us to spend quality time not just with the ones we love, but with ourselves as well, time for quiet and stillness, time for prayer, time for conversations with God. When we admit that we’re tired, worn out frustrated and stressed, we come to a place of not having the shame that those feelings sometimes carry, but rather the ability to recognize those feelings and then change the narrative of how we’re using our time.

I’m writing this piece while my son is at therapy, and afterwards I will be taking the both of us for a haircut, which is always an interesting time because he still has a hard time sitting in the chair by himself while the sensory overload of the haircut activity takes over. Normally, my wife will come with and we will team up to make it through, one helps to restrain his moving head and flailing arms, and one holds his Ipad with his favorite shows. Afterwards, my wife will usually take my son home and then I get to have my haircut, by myself in peace with just me and the sound of the clippers. I think this experience is the perfect analogy for what I’ve just described here, as when it is time for us to be present, then we need to be present, always mindful of every move and reaction my son has to the scissors of life. But when I get my own space, I take it and use it for meaningful, positive rest that can truly restore me for the next time I will be fully present once again. I also freely admit that I nod off a little bit when I get my beard trimmed, and I can certainly be OK with that, as there is nothing like a good ‘ol power nap, and I’ve never woken up to a crooked face.