Part II of III
The five and a half year-old Gussy loves his routines. Here is a typical day for the little man.
Almost always the first kid to wake up, Gus strolls casually into his parents’ room on a quest to locate the iPad. With the objective accomplished, he returns to his room and closes the door. That is a detail that cannot be left out. He has a thing about keeping his bedroom door closed. If someone leaves it open, he sighs, stops what he’s doing, gets up, and closes the door. Then he returns to his iPad.
Every morning, Gus eats a bowl of dry cheerios and some mini-chocolate chip muffins. And I mean, every morning. Usually we get a banana and a smoothie in him as well but not always. Two Flintstones’ vitamins go down without a fight. As O’s drop and bounce haphazardly on the table, chair, and floor, he demands a book to be read during breakfast - often leaving the table to bring one over and jam it into your face for emphasis.
Gus has a slight obsession with books. And he always wants to read six of them for some reason. I don’t know why but that’s his magic number. Gerald and Piggie are his go-to. Pete the Cat is acceptable. “M is for Metal” still rocks his world. (Thank you Goldberg-Kelly family.) He would be pretty much content to have a book read to him for an entire day if someone was willing to indulge him.
After breakfast come the clothes. He pretty much rejects any pants nowadays that aren’t sweats or warm-ups. (Dressing by himself is still kind of a chore but we practice every night with PJ’s.) If it’s a school day, he inevitably complains. And if it’s a really bad day, he spaghetti leg squats onto the floor and flounders around to thwart being handled.
Gus is still wearing a pull-up but 99% of the time it’s only for a pee. I’d take that option over the alternative any day of the week and twice on Sundays.
His speech is improving every day, too. There are occasional moments when Gus will go on an unprompted tangent such as … anything having to do with riding in my car. (He absolutely loves cruising in the Malibubonic with the windows down and the radio on.) He will launch into a twenty question deposition asking “ah we taking Daddy’s cah?” and “where ah we goin?” (The Mass. accent seems to be rooting.) When he goes on rolls like this, THE WIFE and I just look at each other and grin with unspoken pride. Granted, those outside of his inner posse often struggle to understand what Gus says without a “translator” nearby but honestly, he’s getting there bit by bit every single day.
So eventually, one of us somehow gets Gus onto the “bus” (technically, it’s a tricked out van) with Miss Vera (the sweetest lady in Easton) when she arrives around 8. We chat it up with the other kiddos while we buckle Gus’ seat belt. After we exit, all family members present do this thing we call the “deet-dee-dee-deet” by sticking our thumbs in our ears and making antlers with our hands. We nod our heads side to side and say “deet-dee-dee-deet” over and over again until the bus pulls away. Most of the kids on the bus do it in return like a salute goodbye. Then we blow kisses and flash “I love you” in sign language. As McGoo-corny-Disney movie-Hallmark movie-American Girl movie-hoaky as it may sound to the curmudgeon, it’s one of the best parts of the day in my book.
(Then, Gus goes to school for six hours and we have no clue what the hell happens. But that’s another blog for another day.)
Mr. Nick (great dude) drops off Gus around 2. G-man rarely volunteers anything about the day’s events. He just comes in on a mission to play with whomever is home or watch a show (usually Yo Gabba Gabba or Super Why.) He strips off his neon New Balance kicks immediately (he much rather prefers his Crocs) and marches into the living room to roll around in weird positions on the couch cushions. If he had a butler, he’d ring a bell for Goldfish. And milk. Please. (He is very polite.)
At dinner, Gus will eat pasta and cucumbers. And pretty much nothing else. And when he eats his cucumber, our Anthony Bourdain only eats the inner seedy flesh. The uneaten outer portions sit on the plate like the remnants of a watermelon rind complete with bite marks.
On good nights, we have a post-dinner dance party in the kitchen. Gus’ favorite song hands down is “Honey I’m Good” by Andy Grammer. He literally gets bullshit when anyone else tries to sing because it’s his song.
G-man’s patented dance move is a rocking side to side bounce that alternates one foot in the air while patting his arms on his thighs. Gus also has a little kick move that busts out every once in a while when he’s fired up. We’ve recently started expanding on the choreography, so stay tuned for updates on his candidacy for “So You Think You Can Dance.”
Next comes tubby time. Although it’s getting tight, we still try to bathe all three of the kids at once. They generally fight within two minutes of entry if they’re not already fighting about something. And all of them are equally to blame. Then brushing of teeth. Then reading of books.
In addition to the standing order that we read six books, the reading must take place in mom’s and dad’s bed. Once done, finally, he’s off to bed. However, Gus’ particularities don’t end there.
First of all, Gus insists on his Monsters, Inc. sheets like a celebrity insists upon 5000-count Egyptian cotton linens. And when he finally lays his head down on the pillow, Sully and Mike have to be right side up facing him - not Squishy and Terry/Terri who are on the other side. If I forget to turn on his sound machine or pull down his shade, Gus will grunt with indignation and beckon me back to take care of business. Then. Finally. It’s lots of kisses and squeezes, I love you’s, and the light is off.
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Every once in a while, Gus and I will be out and about somewhere when we encounter a small child with his or her mom or dad. That child, innocent as can be, might stare at Gus with wonder. The child knows that something seems a bit different about Gus. Some say nothing and move on, or they may say “His eyes look funny,” or something else totally innocuous and honest. The poor mother or father nervously smiles or laughs and attempts to distract the child to avoid any awkwardness.
Let me say right away that I totally get it. Our feelings are not hurt whatsoever. If I had no child with DS, I would probably react the exact same way. I would have no idea what the right thing to do or say in that situation is either. Just know that from our family to yours: it’s cool. Your child is just calling it like it is.
Gus is different because he is as unique as any other kid in the universe, but also because he has DS, and also because he loves “Honey, I’m good” and cucumbers. He is a little love but he’s not above reproach. If he misbehaves - or makes a bad choice as we like to say around here - then he needs to be disciplined accordingly.
There are very compassionate and caring people out there that blindly love people with DS because they are “special” or some other synonym. Those folks are not wrong and we absolutely love that supporters like them are out there. We welcome their encouragement without reservation and thank them for watching our backs.
But here’s the thing. As parents, we want Gus to continue winning people over with his charisma, sense of humor, sweetness, affection, quirks, and everything else that is wonderful about him. However, we don’t want him to get a free pass just because he has Down’s. Make him earn your love.
Don’t get me wrong. We love all our homies with extra chromies no doubt. But we love anyone who is our family’s homey with or without extra chromies period.
I hate to get all philosophical or lecture mode on you, dear reader. Especially on a day when peeps might be going to church. So, let me steer us back to where we started. Andy Grammar - cue the music for our re-mix:
“Oh no, honey we’re good. Gus loves your jam. And he rocks it all the time. He’s. Got. A family at home. Who loves him a lot. And..”
Sorry Gus just grabbed the mike and he’s running away with it. We’ll catch up with you next time!
