A special purpose, and not in a good way

Picture the scene. You’re at the municipal pool and you see a dad, pushing the limits of middle age but not much else, escorting his young adult son around the wave pool. He’s got one arm under his son’s elbow and the other on his back. They walk very slowly, the father watching the floor in front of his son’s feet like he expects to find rattlesnakes under every third tile. The father speaks to his son, very slowly and so softly you can’t make out what his words are. You’re guessing neither can the son.

The son has special needs. You’re not sure what it is he’s dealing with, but it’s making him walk quite stiffly and with unmistakable hesitation. But he’s walking, and his legs don’t have the movement you normally see in people with cerebral palsy. Of course you don’t know much about cerebral palsy so you could easily be wrong.

Not that it matters anyway. It’s obvious this young man faces challenges different than most people, and whether you personally understand what they are makes zero difference.

His eyes are wide open but they don’t appear to see all that much. Maybe his vision is impaired, but you don’t actually know that either. On his face is an expression halfway between rictus and smirk, unless that’s too tautological for comfort. But there’s a little bit of drool on his chin. That you’re sure of.

You don’t judge — of course you don’t. That’s not at all the kind of person you are. Besides, you don’t know anything about this family’s story, just as they don’t know anything about yours. Your kids look healthy and normal enough, splashing about in the pool and squealing their way down the water slide, but you never do know what lurks beneath the skin. Some people have crippling anxiety issues that exist despite their uproarious laughter. They look happy but inside they’re a mess of nerves so bad they have trouble getting out of bed some mornings. Others are bipolar and don’t always look the same even to people who know them well. Others again have massive cases of OCD. Ah, finally something you understand. You’re so anal about things you can’t breathe properly when the mat in your car isn’t lined up right. Not something most people know about you (thank goodness) because obviously nobody can see OCD very well. One of life’s minor mercies.

In any case, everyone is entitled to enjoy swimming, regardless of their abilities. Even more so here in this wonderful facility owned and operated by everyone’s tax dollars. You strongly believe in making everyone feel welcome. And you’re more than happy to make room for those who need it to be who they are. What a better place to be for a father and his son on a cold Sunday afternoon a few weeks before Christmas than at the pool getting a wee bit of exercise and some bonding time together.

You should be beaming with satisfied glee. The world running as it should. But there’s that thing tugging at you. A concern that rises up from your consciousness unbidden, and that won’t let itself be ignored. It’s diffuse, imprecise. There’s no name you can find for what you’re feeling. But you’re feeling it alright.

You try to forget it. Nobody is bothering you, your kids are having a blast, you’re looking forward to getting back to the clean house you spent the morning scrubbing, and the scale even showed you an unexpectedly pleasant set of digits when you sprang out of bed after a lovely night of ZZs. Nothing’s wrong at this particular moment in your life except for that early batch of gingerbread cookies that wound up a touch on the over-baked side. Might have to chug them down warmed up with ice cream on top, the horror.

You’re feeling good, happy, pretty and privileged. Why can’t you enjoy that and splash about like a woman with not a care in the world? What is wrong with you?

You try to shake yourself into a proper mental space. You really do. You get one of the floaty mats and lie on it. The waves come and make you bounce gently. A few feet away a young father is giggling with his baby girl. Life is good.

You hear that? Life is GOOD, dammit.

But the father and son come back in your field of vision and that unease you felt returns, too.

Why does the father look like he’s trying to walk for his son?

You don’t know. Perhaps the son can’t walk on his own. But that’s not the way it looks to you. It looks to you like the father is possibly giving more assistance than the son requires. And maybe that’s what’s bothering you. It looks to you like the son might enjoy himself in the artificial surf a lot more if he was allowed to experience it on his own.

Why not let him explore a bit? Find a suitable spot for him and otherwise let him be, from a safe distance if that’s necessary? So what if he accidentally inhales a few molecules of chlorine? Isn’t this part of the fun?

Now you’re ignoring your own children, who are waving like the little maniacs they are to make you watch them spinning in the water until they can’t tell which way is up anymore. They call you and you keep repeating “that’s great honey” but it doesn’t fool anyone. They know and you know and they know that you know that your attention is elsewhere.

Why can’t this young man’s father let go of him for even two minutes? Who needs the other one the most, exactly? Now it’s pissing you off. Ever the more so because you are perfectly aware you have no right to be annoyed.

This bothers you no end. You’re a strong believer in children’s need to learn independence often and early. You have to let kids explore and make mistakes on their own if they are to learn how to navigate the world when you’re no longer by their side and ready to catch them. If you wait until they’re all grown up to try out their wings, they’ll crash horribly. At least, that’s what you think and how you’re raising your own offspring. And so far, so good. A few scrapes and hurt feelings, but nothing more serious than that. And you’re proud of the resourceful and competent little people you’ve produced.

But you don’t say anything to this father. You can’t use your kids as a comparison to this young man because as far as you know (or hope) yours aren’t dealing with unusual challenges except maybe a very weird mom who can’t just relax like a normal person on a weekend. You don’t know what it’s like to have a special-needs child. You have no idea what kinds of sacrifices parents are required to make sometimes when life hands them a dependent who is much more so than the ones you personally spawned.

Still, it gnaws at you.

You’re at the mall and see this woman in her late 30s with her pre-teen daughter who has Down syndrome. You take a moment to reflect on the fact that there are so few folks with Down syndrome around anymore. Must be all the prenatal screening they do. The one you refused when you were pregnant because you didn’t want to face the decision to abort a baby just because she had a spare chromosome. Maybe most parents-to-be nowadays don’t want to hesitate. They screen and discard fetuses they consider defective. Sounds harsh when you put it like that, and once again you’re probably quite wrong about things you don’t know all that much about. But that’s what you think of it.

Anyway. This girl at this food court is enjoying her A&W onion rings mightily. She’s poured honey all over them (don’t knock it until you’ve tried it) and her face is unspeakably sticky sweet. She’s all smiles as she talks — louder than is strictly necessary — about the new pair of shoes she and her mom are here to buy. Nike really are the best, don’t you know.

The mother is smiling, too, but not unduly. She’s smiling the way every busy mother does — half distracted by something else she’d rather do than listen to her daughter enthuse about the same goddamn thing for the 73489th time.

But she does listen, you know. Like all mothers do. Why? To avoid feeling guilty, is why. Just about everything a mother does is for that very reason, we’re not going to have an argument about this now are we?

The mother does not appear especially concerned with the honey all over her daughter’s face. You’re thinking she has a lot more patience than you do, which when you think about it isn’t saying very much since you’re a world champion in your age group (the “not dead yet”) at the impatience game. Oh, it’s not like you can’t wait for things. You’re fine with that. But when someone makes a mess with food or crayons or whatever, no matter how small and fixable the mess is, you want to strangle whoever made it no matter how adorable they look when they’re finally asleep. It’s all you can do not to hit the roof with flames coming out of your head like that Anger character in the Inside Out movie.

This mother must be some kind of angel because she’s not losing her shit at all. There’s honey everywhere, including a little bit in her daughter’s hair despite the tight ponytail, and there she is, quietly waiting for the feasting to abate. When it does you watch in disbelief as the mother grabs a package of baby wipes from her magic bag and hands it to her daughter. Who then washes her face without complaining. If you tried that with your seven-year-old, you’d need a straight-jacket and leg restraints and the chubby face would never get clean.

The daughter doesn’t do a perfect job. What kid ever does? So the mother asks her if she’d rather go to the bathroom to do a better job under the light there, or have Mom finish cleaning up her face. You marvel at her good humour.

The daughter happily agrees to have her mom finish the cleanup job and not twenty seconds later her face sparkles, the wipes are put away and you are (metaphorically; that’s important to know) sitting on the floor unable to move you’re so awe-struck.

Like, really? It’s possible to be this good at mothering? Surely this woman is evil when someone walks on her freshly washed floor, yes? Please?

But here’s the thing that really makes you reflect on the role of motherhood and the purpose of it for mothers and the rest of society. When they get up from the table, the mother makes her daughter throw out her trash, put her tray away, and double-check to make sure she has all her stuff. Then they walk away together — you presume in the direction of Nike Nirvana — and the daughter is walking by herself of course, carrying her own things. What’s more, her mother speaks with a normal voice, not babying her daughter just because she has Down.

And this is big, like BIG big, as far as you’re concerned. For one thing, you think baby-talk is the most inane thing ever invented by humans except possibly for reality television. Babies aren’t stupid, they are full albeit slightly under-developed human beings. Don’t talk to them like they’re a budgie. They won’t ever perch on your shoulder that way. And for another, it just sounds so stupid and if there’s one thing you hate to the point of being highly allergic to it, is unnecessary stupidity.

You don’t follow the mother-daughter pair, so you have no way of knowing how ecstatic they both are when they walk out of the store. In the bag, a box containing the shoes the daughter wore on her way in and on her feet, brand-spanking new Nikes in just the right size with a feel that makes her believe she’s walking on clouds. The mother’s pretty happy, too, and not just because the salesperson treated her daughter like anyone else — which she is, thank you very much. He didn’t condescend to her and didn’t slow down his speech. He found the right size in the backroom and smiled when she almost squealed that those were the best runners ever. No, the mother’s on her own cloud because on top of everything else the Most Perfectest Shoes Ever were 40 percent off.

Motherhood is all fine and good, including motherhood with a special needs child, but if we can save ourselves a few bucks here and there we might just be able to go see a movie, too. If that’s not happiness, I don’t know what is.

But like I said, you don’t see any of that because you’re busy brooding and pondering. About why people — everyone; this society in its entirely — is so invested in the idea of a mother god? Or, you suppose, a father god? Anyway, a selfless parent who doesn’t mind hiding behind his or her offspring and living their life vicariously, without the smallest regard for their own needs and desires. What, pray tell, is the deal with that?

You’re absolutely certain most people would look at the pool’s father-son duo and feel nothing but admiration for the selfless dad. But you’re also absolutely certainly that’d be wrong.

Parents aren’t meant to be selfless, and it’s a crazy unrealistic standard for anyone to try and reach. Why do you think we feel so guilty all the time? Because we can’t be that perfect. And when we realize that we’re miserable and depressed and next thing you know we’re out of wine which doesn’t help with anything. You know that first-hand. So would every other parent, if only they took a minute to look, with their eyes open, in the deep recesses of their beings.

Still, that ideal of the selfless parent endures. Why?

Purpose, is why. At any rate, that’s what you think. You believe most people are terrified of the need to find some sense for their own existence, that’s why they bury themselves under layer upon layers of busyness. Not having time to think about what you should be doing with your life because you’re too crazy busy picking up dirty socks from the crawl space behind the stairs and preparing food that disappears in no time flat is immensely liberating for humans so afraid of what might be in their souls that they’d rather behave like machines. People who can’t stand the thought of having to answer the question: “Hey, you there, human with the red hair and the flabby tummy, you’re here for what exactly?”

“My children” is an answer that’s disarmingly easy to provide and a perfect one, too. Ah, a parent. A selfless being devoted to the welfare and happiness of other people. Of course that’s what you’re here for. Move along.

Until of course the kids leave and then what.

But there’s more, and it’s the situation where a parent is looking after a child with special needs. When someone else’s condition defines you, when you’re that parent living through your children because it’s a lot less scary than figuring out your own reason to justify why you metabolize — you cannot allow the challenges brought on by the condition to get better because if they do there goes your purpose.

No wonder we find new special needs (allergies, social disorders, learning difficulties) under every eyelid. What a boon to parents anxious to avoid questioning themselves.

The parent in search of an excuse not to think about his or her life’s point outside of basic human reproduction might be tempted to think the special need is so special that there is no way ever the child could learn to manage more or less on their own. The parent in search of a purpose becomes consumed with the need. The need itself becomes the relationship, replacing the child as the other entity the parent has a relationship with.

So now the need not only defines the child but the parent as well — and as long as the need lives nobody has to find a purpose. The existential angst related to finding a point to one’s life becomes obliterated. In some people, the importance of avoiding this angst is so strong that they will perpetuate the child’s special need until death. Theirs or the child’s.

If the need survives the parent’s natural life-span, well, then, disaster avoided. Or so they think. The parent dies knowing he or she did what was expected of them without sparing one thought to the harsh reality that they were in fact completely wrong about that.

You wish you could relax like a normal person. But you can’t. Because standards like that are wrong, and you can’t ignore them.

Writer | Ottawa. Books include Épître aux tartempions, Le national-syndicalisme, Down the Road Never Travelled, Not Just for Kicks, Le livre Uber (upcoming).

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