maryBy Attorney Mary B. McKee

Palin, Santorum, McKee.

As the Sesame Street ditty goes:  “One of these things is not like the other two…”

But, as it so happens, we do all have a child with a genetic disorder.

Gus, like my other two teenage offspring, was a fetus way back when.  (There’s that theme song again.)  Gus’s testing showed that if we were going to have this baby, we better learn about Down syndrome so we could know what to expect and maybe be better parents.  People whose babies suffer birth injuries, or people who decline to undergo any prenatal testing, don’t have that luxury, if you can call it that.  Instead, they may have the luxury of a few more months of blissful ignorance, and just have to deal with the news when the time comes.  On the little one’s birth-day, and however-happily ever after.

This article is not about the object (or objectivity or objectionableness) of prenatal testing, nor is it about whether you or someone you know would likely be among the 90% who choose abortion faced with such news, or among the 10% who choose to carry on.  Mr. Santorum cited these statistics as accurate “once the mother and father find out that child is going to be less than what they were expecting.”

This article is about “expecting,” that quaint expression for the delicate condition we now, more clinically, call “being pregnant.”  Gus is actually quite a bit more than what we were expecting.  Maybe he’s not as intelligent or talkative or coordinated as we had crossed our fingers (if not our chromosomes) for, but he is for the most part routinely more cooperative and charming and resilient than we could have hoped.  Maybe all parents say that, even about their typically developing teenagers.

I was fortunate to be healthy enough to work right up to delivering the baby.  Go to a Social Security hearing on a Friday, have the baby over the weekend. So I didn’t have a whole lot of time to spend just “expecting.”  Besides, at the time, I was moving back to Ohio and starting a new job, selling one house and buying another, all while my husband’s at home raising our 2-year old.  When the doctor did the mini-stress-assessment, we all just laughed and she said, well at least no one’s getting divorced or dying.

We won’t talk about Gus’s heart operation at three months old – The surgeon said it was harder on the parents than on the baby.  And that was the good news.  (The bad news is it’s really hard on the baby – Gus has no memory of it, only the staple-scars down his chest).  We won’t talk about the studies showing—now that there’s a pool of people with Down syndrome who are living to a ripe old age (in their 50s)—that they’re more likely to suffer from dementia at a younger age than the rest of us.  Maybe Mother Nature knew what she was doing with the heart defect so common among people with Down syndrome…?  Can’t think like that once the little guy is already here, I know.  But try keeping that thought at bay on long drives and as you fall asleep.

Nah, let’s talk instead about our first visit with our 15-year old son to a pediatric behavioral psychologist a couple weeks ago for help with what we now, again quite clinically, call “behaviors.”  He isn’t lashing out at his teachers or his classmates or his sisters or his father.  Just at me.  The one person whose company he usually craves the most.  This is the part I wasn’t expecting back when I was expecting.  I preferred to focus on the literature about the tendency of those with Down syndrome to be affectionate, finding comfort in the idea that along with lower cognitive function comes lower levels of angst.  The upside of Down’s, to steal a phrase.  If his basic needs are met (food, shelter, kindness), he can have a good life.  Yeah, that’s the ticket.

And so far it has been a good life, truly.  Not so different from his sisters’ lives, if you use a cosmic slide-rule.  (If you’re too young to know what I’m talking about, look it up, I’m sure there’s an app for that.)  He likes school, school likes him.  Home-life has been calm and steady, and often fun.

But then Gus, quite uncharacteristically, began in the last year or so to get rough with me on occasion.  Remember that public service bit on TV with the eggs and the frying pan:  “This is your brain.  This is your brain on drugs.”  Well, how about this twist.  “This is a 15-year old boy.  This is a 15-year old boy with the mind of what, a 7-year old?  Oh, yeah, a 7-year old who can’t talk or read or zip up his own fly.”  We can’t easily chastise him, “use your words,” when he’s so angry and frustrated that teeth-gritting and fist-clenching and cave-man-shouting are not enough to make his point.  Half the time, we don’t even know what his point is.  Maybe he doesn’t, either.  After all, he’s a teenager.  Who knows what comes over them when they resort to door-slamming? But when he, unlike other young men, gets physical and comes to blows or whips off his glasses or grabs at mine (one of the worst things you can do at our house, right up there with throwing a book or hitting your mother), we can’t dangle his allowance or video-game time or warn him about the perils of juvenile delinquency on his long-term future success.  We can’t punish him by taking things away (there’s just so little to take away – bacon, his trampoline), I told the doctor.  We threaten him with what, taking his mother away if he doesn’t behave?  Exactly. Huh?  That’s what I said.  But the doctor’s right.  It’s already working.

So what I’m so grateful to be learning as we begin this series of appointments and behavior modification steps and social narratives is not just how to cope myself, but that this smart, pretty lady at Kidslink (Gus was transfixed!), who’s treated so many families, can discern that our son has the mental ability to learn how to cope in his own way, too.  And that, right there, is the difference between imagining that I, a lay-person, can work this out on my own or read a book or go online, and acknowledging that we need professional help.  I know my own kid, yes, but I was going about it all wrong.  A lot of it is, frankly, counterintuitive and against my nature.  Stop talking and withhold forgiveness? Me?  But this psychologist has real “street cred” as she assures us Gus is capable of conforming to our basic expectations of civility.

Like I said, “expecting” can be treacherous and, if not bound to disappoint or exasperate, then bound at least to surprise or startle, especially in the world of disabilities.  Knowing—even a bit more than you did before and most likely a fair bit more—is, to my mind, far better.  This time I’m talking about what to expect when you’re envisioning the baby’s adolescence, not just the baby’s arrival.  If puberty isn’t a special-needs phase for any parent’s child, I don’t know what is.  I suspect that’s why Mother Nature arranges for every parent to survive (and vaguely remember) our own adolescence, to help us survive our teenager’s.

Fifteen years ago, veteran parents of children with Down syndrome would share Emily Perl Kingsley’s “Welcome to Holland” story with new parents like us. It’s short, and worth a read.

Now, increasingly (regardless of the 2012 election results, I bet), parents will very rarely emerge from the plane, surprised to discover themselves in Holland.  They may well agree to board that plane on purpose, or risk getting on a plane without a definite destination, determined to get “there,” wherever “there” is.  But apparently, you can now be forewarned about Down syndrome through a simple maternal blood test as early as 10 weeks along, before you even traditionally tell anyone you’re “expecting.”  At this rate, someday, maybe during my lifetime, women (maybe even my daughters, or their daughters if they have any), will know right quick.  When?  Maybe the morning after.  Not just whether they’re pregnant, but whether they’re headed for Holland.  Will their choice, that pivotal moment, be any easier than ours was back in 1995, when we decided to give Gus a chance?  Doubt it.  For as my college yearbook quote (from Women in Love by D.H. Lawrence) observed, maybe even predicted:  “One needn’t go where one’s ticket says.”

Posted in Articles, Articles: Children with Special Needs.