Max and Tatum first met as babies, in that drunk-seal way babies meet. They benignly ignored one another. Then, if one happened to heave themselves into the other’s personal space, they’d silently assess one another while drooling.
It was the beginning of a beautiful friendship.
In infancy, Max drooled half his weight in saliva every day. I worried about it, Googling: “Can baby dehydrate from excessive drooling.” (FYI: not generally.) Tatum’s mom Michelle and I were first-time mothers, stressing way too much and learning on the job.
Max quickly outgrew the shirts he soaked. Tatum grew more slowly. Tatum popped out some long-awaited teeth, while Max’s were stubborn. Max walked first. Tatum talked first. They were typical babies, except one of them was slightly less typical than the other.
Tatum has Down Syndrome. It’s not a tragedy. She is a beautiful, bright, happy child who could not possibly be more loved by her parents. It’s also challenging beyond belief to her parents and to Tatum herself. There are the challenges created by the extra chromosome that defines Down Syndrome, and the challenges created by the world.
“What’s wrong with her?”
One mother asked this to Michelle, nodding in Tatum’s direction while pushing her own toddler daughter on the swing adjacent to Michelle and Tatum.
“What do you mean?” Michelle asked, worried that Tatum was choking or slipping out of the baby swing.
“Her face. Her eyes. She’s Down Syndrome, right?” “Oh. Yes. She has Down Syndrome.” “Did you find out before?” “Before what?” “Before she was born.” ‘No.” “You didn’t get the test? They can test for that, you know.” “Yes, I know,” Michelle replied. “It wouldn’t have mattered. She is who she is. We’re lucky to have her.”
“Well, I wouldn’t have accepted anything less than perfection.”
Since Michelle told me this story, I occasionally think of this mother and her daughter, the embodiment of chromosomal perfection, who might grow up to become a violin prodigy, or a prolific ax murderer.
But the most likely future for her daughter is that she will grow up to be a typical person, with successes and failures and challenges and joys. No more perfect than Tatum, and no less. I hope that mom is able to cope with this less-than-perfect reality.
While Michelle is, like me, fairly sensitive to hurtful comments about her child, Michelle’s husband Brian tends to let these things roll off him. I asked Brian how he would have handled the mom on the playground, and he said: “It’s fairly easy to identify a person with DS, due to their physical features. Usually, if someone is too devoid of exposure to others that they’re asking what is ‘wrong’ with a child with DS, and not able to understand that the child has a disability, it’s probably an uphill battle anyway.”
So, he shrugs them off. But, as hard as she tries, Michelle can’t. Comments as rude as these occasionally fly at Michelle at unexpected times in public—at the playground, the doctor’s office waiting room and the store.
“Shhh! Stop that! That little girl is RETARDED.”
One day at the grocery store, a curious child approached Tatum and asked her mom why Tatum looked different. The mom grabbed her child’s arm and pulled her away from Tatum.
Was this child prompted by her parent to notice a difference in Tatum? No. But she had been taught how to respond, not just to people with Down Syndrome, but to anyone different than she is.
Brian carries a card in his wallet the size of a credit card, which he hands out to people when he hears the R-word. It basically asks people to remove the word from their vocabulary and gives a few brief reasons why it needs to go.
Brian explained: “There is definitely a derogatory implication about the R-word. It’s used to demean other people or jab them. You might hear a teenager tell their friend, ‘Shut up, don’t be retarded.’ Personally, I think that mostly stems from a view of people with intellectual disabilities being less valued than other people of normal intelligence. Some people just view the word as slang, the same as using a word like dumb. The plain truth is there are other ways to get that point across.”
Michelle gave a talk about Down Syndrome to the kids and teachers in Tatum’s classroom. More than a talk, really. She asked them to put their hand in a sock and try to use a pencil to write their names, to show them what it was like to have low muscle tone. She gave them big marshmallows to stick in their mouths while trying to talk, to show them what it feels like for Tatum to learn to talk.
The kids (and even the teachers) were amazed at how hard Tatum had to work to achieve the everyday tasks they found easy. They told Michelle how much more impressed they were by Tatum, for working so hard, and for never giving up.
“I guess I would just say asking ‘what’s wrong’ with anyone is probably not the best approach. While technically there is a difference in an individual with a disability, as a parent your love and value for them is exactly the same as it is for any child,” Brian said. “If you feel like you have to inquire, make some positive comment like: ‘She is a tiny little girl,’ or ‘I like his sneakers,’ to engage the other parent in accepting way. The parent will probably be fairly forthcoming about more info.”
How do you answer your kids’ questions about their buddies at school who have Down Syndrome? Actually, I wouldn’t know. Because over the years, while other kids asked questions about Tatum’s small stature and all the work she had to put into enunciating her words, Max never seemed to find anything remarkable at all about his friend Tatum.
Not for lack of my leading questions.
“If you have any questions about Tatum you can ask me,” I told him. “OK,” he replied. Or: “Have you ever noticed anything special about Tatum? Anything you’d like to ask a question about” I’d ask him. “Nope.”
Finally, one day at the pool, I found out why. Michelle and I had been discussing some great news while Michelle applied sunscreen to Tatum. They had just returned from Tatum’s annual consult with the heart surgeon. Since Tatum was born, the possibility of heart surgery had loomed somewhere in their future. But that day, the surgeon told them Tatum’s heart was going to be fine and no surgery was needed.
Max was with us, trying to rid his ear of some pool water, so I decided to broach the subject.“Tatum sees more doctors than you do because she has something called Down Syndrome. It makes life harder for her. Have you ever wondered why she’s smaller than your other friends?” “No.” “You’ve never wondered.” “No.” “Not once?” “No. I know why. She’s getting younger.” “Oh.”
“Every time I get older, she gets younger.”
Not for the first time that week, I wanted to live in Max’s world of magical thinking where some people grew up, but others simply said, ‘No, thank you,’ and gracefully stepped off the train to old age. In his mind, why couldn’t Tatum be Benjamin Button or Peter Pan? After all, we asked him to believe scenarios far less logical than this. Just the other day a fairy came into his bedroom and collected his redundant teeth while he slept.
“Tatum’s not getting younger,” I explained. “I like your way better, but in this world, you can grow up but you can’t grow down.”
“OK,” he said. But he looked like he didn’t believe me.
I was in waist-deep now, so I kept plunging forward. “So, because she has Down Syndrome, it means that some things that you can do easily are a little harder for her. Not everything, just some things. So if you ever see her struggling, you can encourage her.”
We looked up at Tatum, who stood on the diving board, scared and unsure. The kids in line behind her hung impatiently on the railing.
Max got up and walked over to the deck.
“You can do it, Tatum!” he yelled. Tatum looked up at him, then down into the water. Over and over, Max kept yelling, “Come on Tatum! Don’t let your Arm Syndrome hold you back!”
Tatum closed her eyes, and stepped off the board.
Michelle turned to me, “Did he just say ‘Arm Syndrome’?”
“I had a talk with him about Tatum. At least, I think I did. He had water in his ear so who knows what he thinks now.”
“He thinks she has Arm Syndrome,” Michelle laughed.
Later, I asked Brian: “If you could tell people one thing about Down Syndrome and the reality of life with it, what would it be?”
“There are big problems in the world, and having a child with DS is not one of them. Yes, our daughter is not going to be a math professor. But then again, who cares?” he said. “She is a fairly healthy and normally functioning human being with some quirks. Big deal. Once you get over the fact that your child has a different life trajectory than you had originally envisioned, it doesn’t seem all that terrible. We have fairly normal, average lives.”
Adults, it’s so simple even a kid can do it. Treat everyone with respect. Insist on this behavior from everyone you know and meet. If you encounter someone who needs help understanding the concepts of empathy and respect, do what Michelle did: Take the opportunity to educate them, wielding marshmallows if necessary.
And, as Michelle and I now frequently remind each other, never, ever let your Arm Syndrome hold you back.