Hi, new mother. I don’t know anything about you: Is this your first child? Were you surprised when your baby was born with a disability, or were you prepared? How is your baby doing? And equally as important, how are you?
Or maybe you’re a mother who is still carrying her child in her womb, and you know your son or daughter is facing life with a disability, but you haven’t yet met your child in the outside world yet. Maybe you’re not even sure you will meet your child—whether by your own choice or by a choice that has been taken out of your hands by God, science, or whatever greater power you subscribe to.
What I do know about you is this: Regardless of whether your baby is in the outside world or inside of you, and regardless of the circumstances of the diagnosis, you’re probably working through some pretty intense feelings right about now. No one can tell you what they are, how you should be feeling them, or how to work through them—they’re yours uniquely.
What I also know is that my son—who, like your child, has a disability—is turning four next week, and I am so excited and also reflective, as I always am when this time of year rolls around. And I know that I’m not much further along this path of motherhood than you are—I don’t have an adult child with a disability, so I can’t speak of a vast body of parenting knowledge. I am but seven years into this gig—and only four years into it with a child with a visible disability.
But here is another thing I know: There is a lot of information out there, positive and negative, about parenting a child with a disability. (Heck, there’s a lot of information out there, positive and negative, about parenting in general!) The positive information can encourage skepticism: Um, you’re making this sound like a bunch of unicorns and rainbows, and that cannot possibly be true! The negative information can scare the pants off of you: Your child will be a burden to your life and to the lives of its siblings.
So, in honor of my son’s fourth birthday, can I share with you a warts-and-all look at my own experience of raising a four-year-old with a disability? The good, the bad, the ugly—I’d like to give you a glimpse. You’ll see unicorns and rainbows, but you’ll also see the not-so-fun pieces of what age four looks like.
And by the way, because you might be curious, my son’s disability is Down syndrome. You know—the scary one that expectant mothers often test for and breathe a big sigh of relief when the test results show a normal chromosome count? It’s both an intellectual disability and a physical one, though in Sam’s case it is mostly intellectual—he doesn’t have much trouble with physical things.
Anyway, here’s what four looks like for us….
Four looks like a little boy who wakes up every morning in the room he shares with his big brother and giggles excitedly when Mama comes in to get him from his crib. He probably could be in a toddler bed by now, but the crib contains him, and he’s not really mature enough yet to have the run of the house at night.
Four looks like a little boy who goes downstairs by himself, even though he’s barely tall enough to handle the stairs, and promptly demands “Mas!” for his beloved Thomas and Friends TV show.
Four looks like a little boy who whines when Mama doesn’t oblige and turn on the show, but who resigns himself to the fact that it’s breakfast time, and helps himself to a bowl of goldfish crackers or pretzels (two of the very few foods he will eat).
Four looks like a little boy who runs over and says “Pack!” when he sees Mama put the Ergo on her back, knowing it’s time to climb on Mama’s back to walk big brother to school.
Four looks like a little boy who, upon returning home from the walk to school, stomps his feet and throws a tantrum over getting in the car to go to his own school because dammit, he’d rather watch Thomas!
Four also looks like a little boy who gets to school wearing a big grin, runs into the classroom, says a big “Hiiiiiiii!”, gives his teacher a hug, and then settles down to eat breakfast with his classmates (though he actually doesn’t eat it—he just likes the ceremony of sitting down for it).
Four looks like a little boy who loves Circle Time—I don’t think I can stress love enough. It looks like a little boy who will sit for endless songs and books during Circle Time, because it’s his favorite time of the day.
Four also looks like a little boy who is surrounded by typically developing children because guess what? Despite having an intellectual disability, he’s doing just fine in a regular preschool. And four looks like a little boy whose friends greet him with an enthusiastic “Sammy’s here!” when he arrives.
Four looks like a tiny round face that lights up in a thousand-watt smile when he glances through the window at school and catches sight of Mama pulling into the parking lot to pick him up. It also looks like a properly chagrined face saying “Oh-tay” when he’s corrected for pulling open the preschool door and bolting out to meet Mama, instead of waiting for Mama to come in. Because, you know, safety first…no matter how excited you are to see Mama.
Four looks like a little boy who gets home and happily takes off his shoes and socks and puts them in the shoe bin by the door because he knows that now, finally, he is allowed to watch his beloved Thomas, as long as he takes his shoes off and puts them away first.
Four looks like a little boy who will leap off the couch, despite Thomas being on TV, and run full-speed to the door when his daddy arrives home, saying, “Hiiiiiii, Dada!” and launching himself at Daddy for a hug.
Four looks like a stubborn little boy refusing to eat dinner because, well, he’s kind of a tyrant about food. Side effect of feeding issues early in life? Maybe. Side effect of being a picky preschooler? Definitely.
Four looks like a little boy who goes through his bedtime routine with a smile—take thyroid medicine, sit on potty, put on PJs, get in bed, listen to bedtime story—even if he never actually does anything on the potty. And okay, four looks like Mama staring dejectedly at the diapers, wondering when he’ll decide he’s on board with this whole potty-training thing.
Four looks like a little boy who goes to sleep while conversing with his big brother. It’s sort of a one-sided conversation, since the four-year-old doesn’t have many words yet, but that doesn’t seem to bother either one of them.
Which brings me to my next point. That whole business about a child with a disability being a burden? I can’t say it never happens, but I don’t buy it in general. In fact, a large-scale study done of families that include a child with Down syndrome showed that the reverse is true—typically developing siblings of people with Down syndrome largely report being proud of their sibling with Down syndrome and that they feel they are better people for having grown up with a sibling with Down syndrome.
In my own home, that has so far been absolutely true. The other day, I asked Theo, my seven-year-old, “What do you think of when you think about Sam?”
“That I want to see him,” Theo replied.
“Why?” I asked.
“Because I love him,” he said.
I then asked Theo what his favorite thing about his brother was. “That he’s the best brother in the world,” Theo said.
“Is there anything that bugs you about Sam?” I asked.
“No,” Theo replied. “Oh, well, except when he wants to watch Thomas all the time.”
“Why does that bother you?”
“Because I want him to play with me! I like playing chase with him and stuff!”
So there you have it: My older son doesn’t seem to be at all suffering from growing up with a brother with a disability.
As for outside perceptions? I had a working theory about something, and I wanted to see whether I was right. So I asked sixty of my closest friends (okay, my friends and family who are on Facebook!) to share the first word that comes to mind when they think of Sam. A lot of people said bacon, which I fully expected because Sam’s love of bacon (which, adorably, he calls “buh-buh-buh-BAIT!”) is legendary. But among those who didn’t say bacon, here are the words they shared: smile, loving, brilliant, joyful, amazing, adorable, heartwarming, endearing, enthusiastic, vigorous, determined, shining, clever, irresistible, infectious, fun, mischievous, sunny, dazzle, inspiring, vibrant, cheeky, beautiful, independent, zestful, awesomelicious, stubborn, bright, shines, cute, and love.
And right there, my theory was proven. The first word people think of when they think of my sweet son has absolutely nothing to do with his disability.
I can’t tell you that no one will ever look at your child and see his or her disability first. It happens all too often, and it stinks when it does. But here’s the thing to remember: The people who see your child that way will most likely be strangers who don’t know your son or daughter. The people who really matter? The people who know you and who know your child? They will see all of the beautiful, amazing, fierce attributes of your child—not the disability.
So if you’re feeling overwhelmed right now with a lot of complicated feelings about disability, about motherhood, about your child, please know that out there in this world are parents who have been there, but who are now looking forward to celebrating their child’s birthday and thinking about all of the amazing, wonderful things about their son or daughter. Depending on where you are in your parenting road, it might be hard to see sometimes, but it’s true—the joy is there, even if the journey wasn’t what you were expecting.
Love to you, and happy birthday to my amazing, loving, joyful, awesomelicious Sam!