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The League of Ordinary Gentlemen

IMG_6990I think I started this as a very different kind of post. When I attended Schuyler’s high school open house last week, it came in the middle of a week in which I was very aware of a resurgence online of the whole narrative equating special needs parenting as almost purely a motherhood experiment. I actually saw two mentions of special needs dads as “babysitting” their own kids, which is a special brand of “NOPE!” in my eyes. So as the herd of parents at open house trudged from classroom to classroom on a bell schedule, I took note of how many fathers were representing that night versus mothers. I jotted down numbers, and I calculated that the average percentage of fathers participating in Schuyler’s classrooms was 65.4 percent. (It would have been higher, but we sort of dropped the ball on art class.)

I had my predictable smug moment on Facebook, where all the best smug moments occur, but I don’t know, it felt like a hollow victory. The reality is that for all the fathers who ARE deeply involved in the advocacy for their kids, there are plenty who aren’t. And those of us who are involved have a very different experience from mothers.

There aren’t a lot of hard numbers on participation by special needs fathers, but there are certainly a lot of conclusions to be drawn from different studies. We know from a University of Wisconsin-Madison study, for example, that the mothers of adolescents and adults with autism actually experience chronic stress at levels comparable to those suffered by soldiers in combat. Those results don’t occur at parallel levels in the fathers of autistic kids.

A 2010 report by the U.S. Department of Health and Human Services describes the experience of special needs fathers and the adverse effects that accompany having a child with a disability in a little more detail. When I first read it, it felt familiar, in ways I wasn’t entirely comfortable with.

Fathers often have intense reactions to their child’s initial diagnosis, and many report experiencing existential conflicts (e.g., reconsidering the purpose of life) as they attempt to adapt to the situation.

Some evidence suggests that fathers of children with disabilities experience poorer psychological functioning (e.g., higher rates of depression, personality difficulties) than do fathers of nondisabled children.

Fathers of children with disabilities often report feelings of guilt, disappointment, lack of control, inferiority and isolation, which can lower their overall sense of well-being.

Fathers of children with disabilities often report feeling cut off from sources of social support, and many report feeling resentful toward others (e.g., neighbors, coworkers) who fail to offer such support.

Other research suggests that fathers’ stress is often exacerbated when care providers, program providers and other sources of support fail to recognize, include and support fathers in their attempts to care for their children.

It’s not all negative, and the report also discusses other, more contradictory studies that basically say, “Nah, they’re all good.” But the overall picture portrays fathers as experiencing most of the same stresses and soul damage as their partners, but in ways that are perhaps less well-understood and certainly less visible. The report paints a portrait of fathers as troubled, but with that damage going largely unseen and unsupported. We don’t really have a very good sense of what special needs fathers are going through, and by “we”, I probably mean us fathers most of all. Motherhood, particularly of special needs kids, has a societal narrative, which may not be fair or even flattering sometimes, but it’s there. For special needs fathers, that narrative is largely nonexistent.

I can tell you from experience, and this is from someone who has frankly enjoyed more positive and public recognition than most disability fathers, that this invisibility and lack of a narrative takes a toll. Those of us who are involved bring a great deal of worry and self-education and lifelong commitment to the table, but we do so while simultaneously insisting that we deserve a place at that table at all.

Here’s the thing, though. And I want to stress this because I don’t want anyone to think for one moment that I’m using any of this as an excuse for absent or uninvolved fathers. Fathers don’t simply deserve a place at the table. We have a responsibility to be there. I’m annoyed when special needs fathers are left out of the discussion. But when they re-enforce that absent narrative, it pisses me off.

If you’re a father and you’re not committed to being an active, involved, pain-in-the-ass level participant in your special needs child’s advocacy, I guess you’re the one I want to reach the most. It’s not that you’re making it harder for the rest of us, because that’s small potatoes to us. I’ve spent the last twelve years wondering if my daughter was going to die from seizures. I’ve spent that same amount of time trying desperately to keep her schools on track and to lay down bridges for her so she can cross the cracks that she could so easily fall through. The lazy societal expectation that’s I’m not going to give a damn or get involved in Schuyler’s care? That’s not a scary junkyard dog. That’s a chihuahua.

If you’re that dad who hasn’t been all that involved, I don’t want to scold you or shame you. I believe we all make choices, even poor ones, for reasons that make sense to us. It’s possible that you truly just don’t give a crap, in which case I’ve got nothing for you. But perhaps you’re not confident in your abilities, and that might be a new sensation for you. You may have been treated like you don’t have a place in the advocacy of your kid, and you’ve simply gone with that. Maybe you think your child’s mother has it all under control and doesn’t want or need your help, which I can assure you is probably not the case. You’re almost certainly scared, because we’re all scared. It’s not a job for an ordinary person, and yet we’re all ordinary people.

I do want to sell you on an idea, however. You may be an ordinary person, like I am, like we all are. But the person you can become is anything but an ordinary parent. The life you can live goes so far beyond what you might imagine it could be. There’s fear that comes with immersion in the life of your disabled child, a kind of fear that goes far beyond the ordinary fear of a father. But there’s more. Even that Department of Health and Human Services report recognized it.

Many fathers report that the experience of caring for a disabled child has led them to experience personal growth and that this experience also has had positive effects on their family life, suggesting that having a child with a disability may have some benefits for fathers.

If the thing I want and argue for so often comes to pass, then society will slowly let go of that old, dumb narrative, the one that says we’re all Homer Simpson or a lot worse, the persistent story that says special needs mothers are angels and superheroes while we are irredeemable doofuses. Special needs fathers could have the space to come into our own. We could have the room to build our own narrative.

If that never happens, I’ll be okay with that. The things that I get from Schuyler and from the experience of being her father and her protector and her springboard into the future, these things can’t be measured or celebrated. I feel more deeply as a person because of Schuyler. I’m more empathetic and far more compassionate because she is in my life. When she watches me, I try so hard to be a better person, to be an ordinary man who transcends my flaws so that she can have more and be more.

Schuyler grants me grace. And that feels extraordinary.

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