You walk through the door of the community center, your three-year-old balanced precariously on your hip, a fat diaper bag slung over your shoulder. You move forward slowly, simultaneously looking for a place to settle, and gathering intelligence on the other children and parents in the room. You are looking for somewhere out of the scrum, somewhere unobtrusive to remove your floppy-limbed child’s coat and boots. It doesn’t take but a few seconds before you notice that all of the children in the play center, running around, climbing the stairs, sliding, rolling along in push-cars, asking for a treat, are young, younger than your child, your child who cannot yet talk or walk.
You force yourself to take a deep breath. To assess the room as one might a minefield. Is there another child who appears to be quieter than the rest? Is there another child who has some obvious signs of disability? (And, yes, you feel guilty about doing this.) Is there another parent who looks like they’d rather be anywhere than in that community center? That’s the worst thing: The lack of community at the community center. Or really anywhere. You want and don’t want to be part of a group of mothers who feel the same worry, who are outsiders.
Already, you know you are making too big a deal of this. It’s just an hour. Already, you know that if you give in to your keening desire to flee back to the isolation of your own home, your child will throw a tantrum, and that will make a bad day–is there another kind?–even worse. That’s no way to parent, you tell yourself. Your child loves people, needs to be around other children, and your weakness–your fear–cannot get in the way of his life. That’s what mothers do, right? They do what needs to be done rather than doing what they would like to do. Here we go, you say to no one. You straighten your spine, shoulders back, checking in with your inner strength, wondering if it is up for another hour of being hyper-consciousness and hyper-vigilance.
Of course, your child doesn’t care. He’ll sit in the middle of the room, watching the other children play. Perhaps he will crawl over to two boys building a tower with blocks, and as he watches, he may get excited, start to bounce on his knees, flap his hands. Maybe he will squeal. The other children will shrink back just slightly, move on to another toy. Even though you know you should encourage play between your child and the other children, you dread that moment when your child knocks over their tower, and they glare accusingly, and you find yourself, explaining, apologizing to 4 and 5-year olds. “I’m sorry. He doesn’t understand.” Or even lying, “Oops, that was an accident!”
Eventually it is just you and your child again. There is often an invisible force-field that grows around you both when in public. You aren’t sure if that’s because you give off unwelcoming vibes, or if you and your child are the unwelcome ones. But this is the way you prefer it, even as you feel guilty for being complicit in making that happen. Your child will pick up one of the discarded blocks, hold it, feel it, turn it over in his hands, maybe test it with his mouth, maybe throw it. And you will smile. And you will be glad he couldn’t throw the block at another child. You encourage him. Join him on the floor so he can stack one block on top of another with no goal of a tower or castle or a house. Just blocks. One, and then another.
Your child’s disability is the elephant in the room. It follows you everywhere; you should give it a name like an imaginary companion. You nod in a friendly, but not-so-friendly way, that you have perfected to keep other parents from asking questions. Because you haven’t built up thick-enough skin to listen to the huddled groups of moms and dads talking of their own parenting frustrations, worrying over their children’s development or habits. To you, these dramatized concerns seem to require emotional band-aids while there is a tourniquet wrapped tight around your heart. It’s not fair, you know that. You know that most of the parents are well-intentioned–you are, after all, one of the sleepless many. And yet, they are thankful to not be you. You can see that relief flash across their faces. You can’t blame them, but you do.
The Community Center seems a fairly benign place to spend an hour, an hour spent similarly by mothers and some fathers everywhere. Anything to wear down the boundless energies of a toddler, to make naptime more likely. Anything to make the time pass. As your child explores, plays in his own way, oblivious, your shoulders begin to sag, and your spirit flags despite any desperate self-talk. You feel eyes all over you. You feel judgment. You feel so damn tired. So you don’t stay the whole hour, but leave early, perhaps claiming your child is tired when you get a questioning look. You don’t go back to the community center for weeks, until you feel there is no other choice in order to keep from going bananas with mid-winter cabin fever. You try again, and maybe one more time, but when you leave after that visit, you know that you will never go back.
Over time, this becomes the rule rather than the exception. You and your child are “others” in a world where sameness is so often valued over diversity. No matter where you go, there is someone who will point out that you or your child doesn’t fit in. One child will mimic your child’s awkward walk once he actually begins to walk. Another will ask his father why that boy still wears a diaper. A mother will use that tone of voice that makes it seem like she is doing you a favor by speaking to you. A father will ask where your child goes to school, and then pretend he didn’t hear your answer because he knows it’s a school he would never send his child. And occasionally a stranger will tell you how to parent your tantruming child.
Other mothers and fathers pour over growth tables and milestone calendars, keep albums filled with notations about how early their child sat up, ate solid food, walked. Your child did not meet any of these milestones on time. And you know he may never meet some of the seemingly attainable, like saying his first word. So your child’s life is marked in inchstones. Small accomplishments. Minute victories. When your child reaches out and grabs a toy—hurray! When your child, already a year, can sit unassisted—huzzah! When your child finally (finally!) misbehaves in a willful way—rejoice! Other mothers will frame their child’s school artwork, but you stop because over time you learn that year after year the artwork looks the same because your child’s skill has not evolved. Other parents will get to discover the new little person their child becomes each day as she learns the alphabet, how to count change, what time it is, and a million bits of knowledge that accumulate into a rapidly evolving child. This will not be your parenting experience, which is more Groundhog’s Day, and less, “Where did the time go?”
You will learn, to your surprise, that some of the parenting rites of passage are similar, though…not so similar. Instead of picking preschools, you pick therapists. Instead of parent-teacher conferences, you attend Individualized Education Program meetings and spend an hour or two listening to just how little your child can do. Instead of vanning your child to tumbling and swimming and soccer classes, you travel for doctor’s appointments and behavioral assessments. Instead of wondering if you should start saving money for college and whether child will attend your alma mater, you wonder if you should start a special needs saving plan, and whether your child will have to attend life skills classes in order to learn to spend money and maybe someday ride the bus. This kind of parenting sometimes makes you feel like you are dying by a million small cuts.
Time passes slowly when your child has developmental delays, and yet, you can’t help but worry far into the future. You know that no parent is guaranteed a happy ending, and there are plenty of families who are dealing with the actual loss of a child, not just with a loss of a dream. But with no diagnosis, and no scale to judge his progress by, you have no idea what your child’s life will look like. But you know it will look different from those of most children, and what you can look forward to will be different from most mothers. This will sometimes make you feel like the loneliness person on the planet.
Still, each day, even each hour, you look for signs, such small signs, that something good is happening, will happen. You settle into a life not measured in leaps and bounds, but in nudges and smidges. This is parenting in slow-motion, like running in sand, sometimes like running in place, effortful and plodding. For years you will hear other parents decry the speed at which their children grow, but you, no, you will deeply desire time to fly, because then maybe your child can take to his wings.