A Very Special Club

A few months after my daughter was born, I joined a very special club, one I never imagined I would join. There was no application to fill out, no interview for admission, no initiation, no clubhouse to visit and no fancy card for my wallet. I don't get any special discounts, social benefits or exclusive privileges even though I have to pay thousands of dollars in annual fees. Sure, this may sound like a questionable deal but it's the reality of my life and it's hard to imagine it any other way.

As we approach Father's Day, I'd like to recognize the other members of my club, nearly all of whom I've never met. We are fathers of special needs children we love and cherish. And we try, like our kids with serious health issues and/or disabilities, to live our lives as best we can, despite the ever present pressures and challenges.

I appreciate as much as anyone how mothers of special needs children deserve all the credit in the world. They are veritable heroes and usually serve as the primary caregiver, emotional steward and managing director for their families, often while holding down a job. But for a brief moment, I'd like to acknowledge what dads of special needs kids aspire to do on a daily basis.

Ten million children in the United States have special needs, which means there are millions of dads out there rowing hard to keep moving and stay afloat. At work, we try to be as focused and professional as possible, resisting the temptation to be angst-ridden or depressed about the issues facing our child. At home, we attempt to be a steadying influence, keeping our families functional in spite of the frequent traumas and tension. We strive to be good husbands for our overstressed spouses and supportive dads for all the kids, even though the ones with special needs demand a disproportionate amount of attention. Unfortunately, the more time we spend attending to one child, the less time we have available for everyone else in the family, which can justifiably cause jealousy and resentment from those who feel underappreciated.

All these factors can easily upset the fragile equilibrium of a marriage. When our daughter was first diagnosed with intractable epilepsy, the best advice we ever received from a pediatric neurologist was: "Having a sick kid wrecks a marriage 90 percent of the time." While I've never been able to confirm this statistic, anecdotal evidence seems to support its validity. Fathers of special needs kids, like mothers, deal with different emotional and financial stresses as they struggle to keep everything and everyone together. Under these circumstances, it's tough to find private quality time as a couple, and a worry-free vacation without the kids is pretty much a pipedream. I've seen numerous marriages crumble or become dysfunctional under all the weight, which is understandable yet sad because raising a child with special needs as a single parent is exceptionally difficult.

Although I sometimes wish I were not a member of this club, being Rebecca's father has its privileges. Life's simple pleasures are particularly meaningful: shared smiles and laughter, singing songs, reading books before bedtime, celebrating another year of her life as she blows out her birthday candles with gusto. Thanks to this experience, I've learned never ever to take anything or anyone for granted. And I've finally figured out that all dads, whether we have kids with special needs or not, really have the same choice: Are we willing to work as hard as we can, despite our imperfections, to be the best fathers we can be? It may not be easy but few things in life actually are.

Topic Editor: Steven C. Schachter, M.D.
Last Reviewed: 6/1/08