This post is part of a blog hop in honor of World Down Syndrome Day on March 21 — the date is 3/21 for the three copies of the 21st chromosome that cause Down syndrome. (It will surprise no one who knows me that I am a day late on this).
The other day I was sitting around with my three kids talking about opposites. Our little kids, boy/girl twins who are 5, are in preschool. So they think in terms of pretty basic opposites like in and out or up and down. Our oldest daughter, who is 8, likes to play around with ideas a little more and she was trying to figure out the opposite of things not normally known for having antonyms, like rainbows and dogs. (“Well,” she said, “isn’t cat the opposite of dog?”)
Soon we were cracking up because I was asking, “What’s the opposite of nose?” and her little sister would say “No nose,” and so forth, with all of the body parts. The conversation came around to ourselves. The opposite of little sister was “not crazy” and the opposite of big sister was “not weird,” and the opposite of me was probably something like “nice.” Then the girls asked me what would be the opposite of their brother, who has Down syndrome. I thought for just a few seconds when it hit me: boring.
My son is many things: full of energy, willful, persistent, hard to motivate, uproariously funny, frustrating, defiant, loving, silly, curious and strong. But he is anything but boring. He has never been boring. Not when he was learning to crawl and would lie on his belly and shake his legs in the air furiously behind him for a happy dance. Not when he lights up like a Christmas tree at the sight of a dog. Not when he says “No, mine’s!” about every toy that enters the house that someone else tries to play with. Not when he puts on a “show” by using a blanket as a cape and pretends to be his latest favorite hero/princess/super pig. Not when he shrugs his shoulders at an important question (“Where did you put the remote control?”) and says “I… don’t… know.” There is something particularly enchanting about hearing my language-delayed son learn the correct use of a phrase that rolls so easily off the tongue for most of us.
A typical day for him starts with me rousing him from bed and him grumping about getting up, possibly calling me “meanie,” before laughing and digging his head into my neck as I pick him up and carry him downstairs. (I still carry all the kids down in the morning if they don’t come down on their own, just because I can and it reminds me they are still my babies.) He goes to the bathroom then runs for his robe and then if he sees that his big sister awake, he tells her to “Stop it,” with a hurt face, even though she hasn’t done anything to him at all – retribution for all the times during the previous day that she’s pestered him. He’ll get to the breakfast table and act all surly because I won’t let him dump ALL the milk in his cereal like he wants to. Later, he’ll get dressed and put his shoes on the wrong feet no matter how much I remind him not to and despite the fact that I have written R and L on them (correctly) and he knows how to read R and L and what they stand for.
In the car on the way to school, he’ll say over and over “Put Frozen song on” until I put on the Frozen soundtrack so he and his twin sister can sing every last word and even act out “Let it Go.” (I won’t torture you with a video of that.)
The most interesting part of his day probably happens at school, which I am not privy to. But I can tell you that his school is an incredible place, where teachers have great respect for their little charges and where the children often direct their own learning. My son has become quite taken by the camera this year, and his teachers tell me that he’d rather stay behind the camera than in front of it. They send me some of his work once in a while.
Here is a picture of one of his best gals being hugged by a teacher.
This shot shows my son multitasking. He’s talking on the phone, “Calling Mommy,” as he told his teacher, while asking a friend to pose for a picture.
Here are a few still-life shot from his classroom environment, including his shoes — placed correctly.
I love photography, and it would be incredible if he made it part of his life. This thrills me so much!
After I pick the twins up from school, a typical day might include a visit to his speech therapist, or a trip to visit his occupational therapist at the horse farm, where he practices fine motor skills on horseback. Going there is like therapy for me because I get to enjoy the uncluttered outdoors and the quietude of nature and feel the sun on my face without kids pulling me in a million different directions. Other days, his twin sister goes to gymnastics – she loves it – or we just go home, eat lunch and take naps until it is time to pick up big sister from school. (Now that, my friends, is the kind of boring that I like.)
When we get finished with those things, it is time to make dinner. Of all the kids, my son is the one who asks most often to help in the kitchen. I usually cringe because I don’t feel like dealing with the extra effort it takes to instruct a child in the culinary ways, especially a child that likes to lick and touch everything, and I mean everything. So we just wash our hands many times because I am trying hard not to shoo him away when he states matter-of-factly, “I gonna help.”
The other day I had him chopping mushrooms for vegetable soup with this super cool kid knife that cuts food but won’t cut skin. That was his only task, and then he was whisked away by his sisters to play outside in our backyard. I was proud of him for doing a good job — and proud of myself for having the patience to let him help – so I was eager to show us off to my husband when he came home from work.
“Can you tell Papi how you helped make dinner tonight?” I asked my son. He was stonewalling us, as per usual, babbling something incomprehensible rather than answering the question. Finally on my fourth or fifth try, he told his father:
“I put the poop in the soup.”
This kid is obsessed with poop, although just to reassure you, no poop was placed anywhere near the soup. It’s just a thing of his – and I guess a thing of ours, since we have spent the better part of two years training him to use the potty consistently and independently. At school, he and some of his best buddies make “poop soup” by stirring wood chips into puddles of water. And one day when I was making dinner, he came right up next to me, and out of the blue said “Whatcha makin’ Mommy, chicken poop soup?” (Um, no, son, I am not in fact making chicken poop soup, but thanks for asking.)
It’s fun to recount these tales about him, mostly because I just want people to know that raising a kid with Down syndrome is equally as wacky, frustrating, heartbreaking, uplifting and fun as raising any other kid.
I want to take this chance to thank some especially fascinating people who have made our son’s journey not just successful, but incredible. Everyone at school, most especially his two gifted teachers, has always done the utmost to encourage his confidence and boost him up as a full member of the community and as a student.
This is a typical preschool that happens to value all children, including those with special learning needs, and they have had much success in the past with children with Down syndrome, so my son is not the first. The wonderful parents in our class have told me that their children don’t notice anything different about our son and talk about him just as they would any other child in the class. When we go to school functions, he gleefully exchanges hugs like all the other kids and is just as quickly grabbed by the hand and led away to play. In these simple acts lies a wealth of happiness for this momma. Thank you all from the bottom of my heart.
These final shots reveal one big reason why he loves going to this school. Because he can be just like his twin, whom he admires above anyone else except his big sister. We put the twins in the same school but separate classes because it gives them space to breathe and have their own identities. We feel they function best when they can do this little dance of being together and yet apart. When they separate and then come back into each other’s line of sight, a tiny spark is lit. And that spark ignites a million more, creating for all of us a life most interesting.
A teacher captured this sweet twin moment where he is watching her on the playground from inside his classroom.
See below to view all the other entries in the blog hop!!!
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