Special Needs Dads

The night I went into labor with my first child, my husband Cliff was halfway through the book The Expectant Father. I timed my contractions and gazed at the book’s cover, a pin-striped shirt with a pastel baby rattle strategically tucked into the pocket where a pen or index card ought to go. “Isn’t it a little late to be reading that?” I asked.

As it turned out, when the labor ended more than fifteen hours later, Cliff couldn’t wait to get his hands on the baby. Me? I gave her a kiss and demanded a hamburger and fries. Let him pour on the love. I was starving.

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Originally I asked my husband to write this column about special needs dads. “Who better to describe the world of special needs fathering?” I asked. “It’s your chance to sit down and give advice and counsel to all those other fathers out there.” But Cliff has navigated these waters his own way, the same as every other special needs father I know.

Special needs mamas trade articles, books, websites, names of specialists. We research and discuss how to get the best educational bang for our buck, what benefits are available to our kids. We call each other to talk about medications, doctors, educational plans. But the fathers are different. I know of only one support group in our area for special needs dads. Amidst the hundreds of websites for special needs mamas, I can think of only a handful written by, and for, the dads.

Maybe it’s because the moms are frantically sharing resources and information that special needs dads tend to stand back, watching, vigilant and aware in a different way. My husband used to spend his days making computer games for kids. The hours were long and the pay was good but the work itself became increasingly meaningless in the face of what was at home: a kid who would probably never play one of those games, and whose needs went far beyond tossing a ball in the front yard.

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Many years ago, shortly after Evan was first born, we received a call from a doctor telling us our son might not make it through the night. We had already lost our daughter, Evan’s twin; the thought of saying goodbye to another child was more than I could bear. Where I had been strong and steadfast through that first week, Cliff had held back, watching, wondering, no doubt, about what to do with this new kind of fatherhood he’d encountered. Clearly we were very far from The Expectant Father and its pastel rattle.

And yet that night, the night Evan nearly didn’t make it, my husband proved yet again that he would not need a manual. While I fled Evan’s bedside, Cliff sat by the isolette, watched the monitor’s awful numbers, listened to the alarms sound over and over again. My husband held our son’s two-inch foot while I paced the hallway outside.

“I’m sorry,” I said when he emerged.

“For what?” he asked.

“For not being able to handle it.”

“It’s okay,” he said, his eyes red, but dry. “That’s why there are two of us.”

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I know fathers who have made career changes to be both more flexible and more reliable for their special needs kids. I also know dads who have worked harder than ever to secure their child’s future. They are torn between being sitting by a hospital bedside or being at work. Often work wins.

This desire to work harder and secure a financial future, combined with the special needs mama’s ability to tackle the day to day management of the child’s schedule often removes the special needs dad from the mix. I know of one dad, when presented with an orange and a syringe and told he would have to learn how to give his daughter injections, replied, “Why? Isn’t my wife going to be giving the shots?” The nurse looked at him and said, “You are both her parents and I’m not allowed to let you leave until I know that you can both do this.”

In the world of special needs, the mamas may call the shots. But special needs dads learn, in their own way, how to give the shots too.

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Like the moment my husband embraced his newborn daughter and I reached for the burger, I have also witnessed his tender, loving acceptance as a special needs dad. While I seek support to offset my fears, Cliff has embraced his imperfect son like nobody’s business. He gave Evan his first nickname (“Boysan”), wrestles with him on the floor, teaches him aikido moves and how to play the bongos. My son laughs to high heaven when he hears his father enter the room, and laughs even harder as soon as the ukelele playing or drumming begins.

My husband is quick to point out all the love I bring my son, all the smiles and laughter. It’s true. My son greets me every morning with a “mum-mum;” “da-da” is not yet part of his vocabulary. He laughs when he hears my voice and I know how to swing him better than anybody.

But know this: while I am on websites telling my story, writing about my son’s world, my husband is sitting right next to him, showing him the universe.