I can still remember how Mother's Day was before we adopted our kids. We had been trying to conceive for a few years, unsuccessfully, and as I sat there quietly in church watching all the mothers stand and get recognized, it was hard not to feel sad and hopeless and maybe a little resentful that all these women got to do something I couldn't.
After we adopted our kids ... well, sitting quietly in church was a thing of the past, for sure. I did get to stand and be counted among the mothers, but only for a minute, because my son would be rolling on the floor or making noise or sticking his hand somewhere it didn't belong. And there were times, early on, when I still felt a little resentful, because all those other women had neat well-behaved children who seemed to know what Mother's Day meant, whereas I had a son who never stopped moving long enough to tolerate a hug, and a daughter who couldn't say "I love you," either linguistically or emotionally.
Holidays are tricky. We have expectations hardwired in. We have family looking on. And it's at those times, when the kids are screaming at church or refusing to hug grandma or unable to eat what everybody else is or play the usual games, that we most feel like poster children for How Hard It Is to Parent Special-Needs Kids. We're saints. We're fools. We're victims.
Most days, though, we're just moms doing what moms do. And that's hard to make people understand -- that parenting kids with disabilities can be hell, and it can be heaven, but it's mostly just muddling in the middle, like everybody else.
That's what struck me most about the recent New York Times article about families of children with Down syndrome who are trying to get the message out that it's not the end of the world. With genetic testing now recommended for all expectant moms, it's more possible than ever to prevent children with Down syndrome from being born. These families are worried that the only voice parents hear before they have to make a decision about terminating a pregnancy will be a doctor's, and that what the doctor will be saying is, "Oh, it's hard, hard, very hard to parent a child like this, why would you want to take that on, it will ruin your marriage, it will ruin your life, it's oh so very hard."
Pretty much the same sort of thing that doctors told the parents of the young men who wrote Count Us In, before recommending that the parents institutionalize their babies and never look back. The world changes, and the world stays the same.
At one point in the Times article, the families involved discuss the difficulty of answering questions from prospective parents, like "How long does it take for these kids to potty-train?" One mom mentioned that the answer, the bad answer, the answer that makes people think it's hard, hard, very hard, was, for her child, five years. But the real answer is, five years, and so what? It got done, and in real life it wasn't such a big darn deal.
It was five years for my son, too, and also not a big deal. But if you'd told me that before we adopted, oh, dear, it would have seemed like one. If we'd known, pre-adoption, that our daughter would be two years behind in high school and still struggling with language, and our son would be in a self-contained special-ed class, still sucking his fingers at age 14, we might have headed for the hills.
Post-adoption, though ... well, it's amazing what you get used to, isn't it? How stuff that sounds unimaginable on paper is really just life. The number of times I look at my kids and lament the things they're missing is dwarfed by the number of times I look at overambitious parents of overprogrammed kids and think -- phew, glad we missed out on that!
This seems to me to be one of the central dilemmas of being a special-needs advocate right now -- how do you make a disability look serious enough for people to want to help, but not so serious that it seems helpless and hopeless? Serious enough to merit a cure, but not so serious as to be better off dead? Serious enough to require educational programs, but not so serious that you don't want that child in your child's class? Serious enough to make prevention a priority, but not so serious that people are afraid to get a diagnosis? Serious enough to get attention, but not so serious that we forget there's a child behind that label, a quirky and invaluable human being?
Maybe that's why I worry about things like Tony Blair touting the toughness of special-needs parenting -- not because it's not tough, and it's not nice of people to say so, but because tough isn't all it is. There's joy there, too, isn't there? Not in an "I'm a saint, and I'm earning a crown in heaven" kind of way, but in an "I'm a mom, and I love my children" kind of way.
It's been over 12 years since we brought our kids home from a Russian orphanage. My son's doing a lot better at sitting quietly in church, and he absolutely loves hugs -- a bit of a problem, since he's now bigger and stronger than I am. My daughter, on the other hand, still doesn't say "I love you" -- but now, it's because she's a normal teenager, and, ew, Mom, no. I couldn't be more proud.