Learning to be a special needs dad

I admit openly that before HG, I never considered the possibility that I’d ever be a special needs dad. I’m not sure if that came from selfishness, naivety, or a combination of the two. Fact is, it never crossed my mind. It was never a “what if?” scenario. It’s fair to say I was painfully unprepared for this role and in ways still be underplaying that fact.

Regardless of the level of anticipation or lack thereof, this is my role. It has thrown me into the deep end feet first and I’m having to learn to swim as I go. Fortunately, I’m good at doggy paddling until I get myself going.

Fatherhood in itself can be a challenge and a daily grind. Throw in what accompanies a special needs child, and it’s an entirely different beast. The number of different checklists I constantly have going on in my head is ridiculous. Every daily activity comes with added steps and processes. Changing a diaper? Make sure to work his legs and have him on his side to straighten him out before picking him up. Has he had enough tummy time today? Have we let his hands feel and touch upon enough textures? Bedtime ritual? Beyond the typical bath/lotion/PJs we have leg stretches, putting AFOs back on. We have wrist splints and now added in putting on boots, leg restraints, and the Doggs bar. Our normal routines are unlike typical routines, and they’ll always be that way. Very few things are more painful than to feel your son’s joints feel tighter (due in part to a growth spurt) and immediately feel guilt and questioning yourself why you haven’t been doing more.

Mental and physical exhaustion are not excuses. Your child’s best hope for a less painful and more independent life lays squarely on your shoulders. It begins and ends with you. You’re not in the game looking for victories, but you’re always focused on avoiding the defeats.

Will I have the typical milestones of first crawl, first steps, first time throwing a ball? Likely not. I don’t have t-ball and little league games to look forward to in the coming years. I won’t get to cheer my son on from the stands or to coach him from the sidelines. I had to give up on those dreams and replace them with the modest hope that one day my son will be able to walk and not need a wheelchair to get around. Having to put away things like the tiniest baseball glove that was meant to be his first or the cool teether that’s made to look like the original Gameboy. Some things simply have to be put in a box, put away in the back of a closet because they belong to dreams that had to be released so that I can function day-to-day. That doesn’t mean I let go of the dreams completely, or that I’ve already written my son off as never having use of his hand to the point he can hold a teething ring or play ball. I hope and pray he does. So very much.

There’s a difference between being optimistic and being a realist. It’s a very finevery precise line, but it’s there. It’s there so I can get by. So I can function as we drive thousands of miles to doctor visits. So I can get up and leave him and my wife as I go to work. It allows me to have a firm footing for our next unforeseen hurdle. You can consume everything with thoughts of “what ifs” and “what nots“, but you have to find a way to not.

I am a father to a special needs child. I’m still learning. As he learns and grows, I learn and grow. My goals may be different for my child. My path, my rituals, my proudest moments may differ from other dads, but I’m still a dad. At my core, at my foundation, I’m a dad to a son, and sometimes concentrating on that, the simplest definition and explanation, are the things that get me from one day to another.

Because at the end of that day, that’s what matters. That you have another day in front of you, and a child that is looking to count on you.

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