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Including our special-needs child in our rough-housing ways


It might not be very insightful to say much of what one encounters as a parent is unexpected. What is surprising is how much of this unexpected lifestyle is simultaneously ridiculous, yet important. With four boys in the house ranging from ages 2 to 10, potty humor is a constant undercurrent of our family life. It appears to be situated close to the heart of what it means to be a little boy. As such, it is ridiculous, but important.

There’s a game called “Doorknob.” The rules are simple. When an individual commits an audible act of flatulence, he must immediately yell “safety.” If he fails to do so, any witness to the flatulence can exclaim, “doorknob!” This person may then repeatedly punch the flatulator until the guilty party touches a doorknob.

The game is popular in our house, but regularly encounters some complications. Isaac, our 5-year-old son, has a rare genetic disorder which falls under the broader description of cerebral palsy. Isaac has a motor-processing delay. He can speak, but it takes him a few seconds longer to take a word from his mind, form it in his mouth, and broadcast it to the world than it typically takes the rest of us. The competitive result is a biological rumble followed by multiple shouts of “doorknob,” and, several seconds later, a somewhat desperate “safety!” While there is a comedic value to this timing, it does nothing to help Isaac in his quest to avoid a fist to the arm.

Isaac cannot walk independently. He has a small walker that he uses to aid him in moving about, but even with it, every member of the household can outrun him. The reality of life is that Isaac is seldom ready and positioned for a run in his walker when he produces an intestinal exhale. More often he is seated somewhere, and would have to transition from the chair to the floor, climb into his walker, and … too late.

Jacob and Caleb, Isaac’s two older brothers, don’t take his disability into account when playing Doorknob. It isn’t that they aren’t aware of his disability; they just don’t seem to view it as a reason to exclude him from the game. It seems almost incomprehensible to them that they should take it easy on Isaac in this or any other aspect of life. That’s an approach to special needs that I want them to hold on to as long as they possibly can, and it is one reason why we haven’t banned Doorknob outright from our house. I like that they include Isaac in this way. I love that they see no reason why he can’t play with them. At the same time, a disabled preschooler desperately crawling across the floor to reach a doorknob while being pummeled by his brothers isn’t exactly what we have in mind when we say we want Isaac to be fully included in family activities.

Practically, I don’t have a great solution. We’ve experimented with rule changes, like one light punch when Isaac is the offender. Some days I just call the game off. Other days I sweep Isaac up in my arms and off we go in a fist-dodging quest to find a doorknob. Occasionally I will commit the abuse-drawing infraction, quietly wait for Isaac to process the situation, then take a few punches in the name of fair play, which is not much of a sacrifice. Isaac is the softest puncher in the house.

The situation is absurd, ridiculous, but still important. Obviously, providing a safe and supportive home for Isaac to grow up in is our priority, but at the same time I don’t want his brothers to stop being what brothers are. The easy answer is to just make the game go away, but I don’t believe “easy” should be the driving ethic of raising a disabled child.  I’ve also got this image that sometimes floats to the front of my mind: the awkwardness of the first day in a college dormitory, the unstated insecurities that go through a young man’s mind as he meets his new companions, wonders whether this place will become home, and bluffs and postures to appear as if it is all okay. I imagine those tensions piled on the back of a young man who is obviously different, set on the outside from the outset; then I imagine someone simultaneously breaking the ice, and the wind, and my son’s declaration of “doorknob!” proclaiming that, yes, shielded within the spindly legs and mobility aides lies a heart that is as much boy as the rest of you. Perhaps that dream is childish, ridiculous, but to me, it is important too.

 

bio-photo-nathan-hackmanNathan Hackman is a stay-at-home dad to four boys, one with cerebral palsy. He writes about the amazing adventure of parenting with a few extra challenges. In his free time he . . . doesn’t have free time.

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