By the time this posts, it’ll still be a bit early, but not by much, so…
Happy Father’s Day!!!
I’m going to go way out on a limb and say life isn’t fair. It’s especially unfair to the child with disabilities. It’s decidedly unfair to the adult with disabilities. It’s still unfair to the parents of those with disabilities. And it’s most especially unfair to people like my husband who is both an adult with a disability and a parent of children with disabilities, particularly a stay-at-home dad to children with disabilities.
A while back there was a brief moment of validation. We were behind on child support—back when we didn’t share joint custody of my step-son—and we were called in to court. The inevitable question of Mark’s supposed joblessness comes up. The first time this happened, he was ordered to go out and find work and show proof that he was looking. This time he explained that he had three children with disabilities and he stayed home to care for them while his wife (that’s me, folks) was self-employed and went to graduate school. There was a brief pause. I could see the man behind the table (it wasn’t even a proper judge’s bench, but that’s a whole different matter) visibly take in this information. “Okay then, you’ll need to make larger payments in order to get caught up.” And that was that. It took him a moment, but he got it. He understood that what Mark is doing is a valuable, worthwhile use of his time even though it doesn’t bring home a paycheck.
So many people just don’t get it and Mark feels guilt over this. Our church is, um, well neither old-fashioned nor traditional really work, so let’s just say “patriarchal.” Men are called to support their families and in a traditional family this is wholly reasonable. But ours is not a traditional family. Our boys need access to both of us and they need more care than most children their age. Our church and personal values emphasize family values; for us, that means that nobody can love and support our children the way we can. Which is not to say that we don’t have some pretty awesome therapists and respite providers who love and support our boys, but they’re not daycare providers and they’re not a replacement for us. They’re not a replacement for a stay-at-home parent. (Besides, keeping track of all that is a job in of itself, and one I’m quite content to leave in Mark’s hands.)
So, why does that mean I should work and Mark should stay home (which is work, too, but I’m not going to belabor the point quite yet)? Two reasons really: First, I have a calling and a compulsion. I need to write. I have important things to write about. Betwixt the two, my not working is not really an option and my working whilst amongst the noise and activity of our boys isn’t particularly productive. Second, I can make more money than my husband can, because Mark’s disability cuts him off from many of the employment options available in our area. Mark’s good at a lot of things, but he can’t drive (which excludes a rather large percentage of the jobs available) and he can’t smile and be friendly to obnoxious people (which excludes customer service jobs, another prevalent line of work in this area) and he can’t work quickly (which excludes most factory positions). There was little opportunity left to Mark in our area before the economic downturn and now there’s none.
It’s very frustrating for Mark who wants to be able to support his family, who wants to take some of the financial pressures off of me, who wants to live up to the values others foist off on him (intentionally or not) even knowing those values assume a set of conditions that are not evident in our reality. It’s hard to face this dissonance, to know he needs to be home but to feel as if he should be out working.
Of course, he is working (and here’s where I belabor the point). Raising children is work. Raising children with special needs is even more work. So, to say he’s not working is simply not true. He is, however, not supporting his family financially. And that bothers him, though, dissonance aside, it shouldn’t.
So, this Father’s Day weekend I would like to give a special salute to all those fathers who struggle with the pressure to perform in one way when they know they need to perform in another way. It’s not easy, but what you do is worth it!