The school days are the hardest. For me as a mother of a daughter with Down syndrome, that’s where the pressure is. If she fusses and whines at church – all is forgiven. In the grocery store, it’s practically expected of young children. At Thanksgiving, the relatives agree she is either a) tired b) coming down with something or c) full.
School. School is where it’s all being tested. School is make or break. Will she make it? Can my four year old daughter with Down syndrome cut it in the real world?
Most days, maybe all of them, I would say she can. She is so close to where other kids are. Academically, emotionally, socially. But today – field trip day – I start to doubt. For a moment, I think I’ve had my head in the sand. For a moment, I think, maybe it’s time to face facts. For a moment I think maybe I’ve been so busy believing, that maybe I couldn’t see what really is.
Today – part of a six week investigation on chocolate – voted on by the students, the class is visiting a local chocolate factory. As usual with my kids (both kids) I prepare my daughter for what’s going to happen. I will drop her off in the morning at school, then come back in an hour to drive her and a friend to the chocolate factory. She gets it. When I leave she says she will see me later. Hug. Kiss. Mwah.
In an hour I return with the other chaperones. There’s a happy educational din of children putting on jackets, clutching their research clipboards, parents jangling car keys, the teachers giving instructions.
All I hear is my daughter.
In their efficiency, the teachers made a color-coded string necklace for each child with their names and cell numbers. Each child is wearing one, the laminated safety information dangling at their tummies.
My daughter is not whining exactly. Not crying. Not yelling. It’s like the sound if a small person, perhaps reduced by a shrink-ray, screamed “no” into a pillow. It’s a sound that makes her classmates stare. It makes their parents stare, until they remember to look away. It makes even her lovely, open-minded teachers glance at me. I imagine their look saying: “You got anything?”
Here’s what I’ve got. I’ve got thirty people waiting for me to figure this out so we can go. I crouch down and put my face inches from hers and say in a low voice, low like Darth Vader, you have to wear it. Willing the depth of my voice to make her put it on. Summoning the power of parenting from a bygone era when children obeyed and that was okay. She said, no I don’t like the necklace. Her articulation is off the charts! Stay focused. I say if you want to go on the field trip you have to wear it. In five seconds I’ve bypassed three volumes of creative parenting and have landed at the chapter on Threats.
She says no. She says I don’t want to.
I look around again. All the children are wearing the necklaces. All the children have shiny shoes, freshly pressed trousers and are fluent in French, German, and one of those lost languages that only thirteen people left in the world can speak.
And my heart rips itself in half.
In general, I want her to say no, loud and clear, for reasons I can barely acknowledge. For four years, almost five, we have taught her that it’s her body and she makes the decisions about her body and what touches it. It’s her mouth and she decides what goes in it. I have sat holding the toothbrush until my forearm hurts waiting for her to open her mouth, on her own. Later I will show her what to do if someone tries to make a decision about her body. I will show her where to aim and how hard. Her ability to say no is an answered prayer. Already I see that this girl speaks up. She stands up for herself. Someday I won’t be with her.
But from the little I see about the public education system, where my daughter is heading, I’m not sure they appreciate the girl who sticks to her guns no matter how many levels of educational arrows are being slung at her. There was a Far Side cartoon years ago with a picture of thousands of indistinguishable penguins. A mass, a mob, maybe even a classroom of thirty-four? And one little guy in the back jumps up and sings, “I gotta be me, I just gotta be me.” It’s a great cartoon, it speaks to a lot of people. But in public school, that little penguin is getting an IEP.
So yes, I’m a little torn about the necklace. I can see where it’s coming from. But how to explain to the hallway full of parents, children and educators that honestly deep down, while I’m trying to be a team player here, while my whole reason for being is for her to be part of the group, I don’t really want her to have to wear a necklace if she doesn’t want to. And the reason I am deep down secretly proud that she won’t put it on is because I’m afraid it will lead one day to a fellow high school student inviting her to a house after school to be used or ridiculed. To someone on her front porch trying to con her into giving away her VISA number. Is it only the truly paranoid mother who could make the leap from being forced to wear something around her neck to sexual assault?
But then what is my daughter thinking? I’ve already softly growled that if she doesn’t put this $*#(@ necklace on she’s off the field trip. What is she thinking? Mom’s inconsistent. She cares too much what people are thinking. Mom’s stressed out and it makes her make poor parenting choices.
She would be right on all counts.
We agree that she will hold the necklace in her hand. I think this is a small victory. (Why does only a “victory” make me feel like a competent parent?)
The chocolate factory gives us a warm welcome. Factory is not the right word. It’s a family-owned, chocolate-making boutique close to residential neighborhoods and parks. Incredibly, one of the owners names is Charlie. We line up outside. It’s sunny, not too warm. The scent is chocolatey and woodsy.
My daughter is lined up with her classmates. She’s holding her research clipboard. Her research partner, a friend and a really neat girl, is next to her. They came up with a research question together. The kids are so good. They’re all on their best behavior. A lady from the chocolate factory comes out. She is so glad to see us. She is so glad we came. Welcome welcome.
I look at my daughter, listening and smiling. I’m in love with education. With learning. With trying and failing. I’m so proud of her. We can do this.
The lady holds out a mass of something pale brown and kind of fluffy. She peels off something beige and soft, soft as a fluffy chick. She holds it out. There’s just one more thing, she says, before we go in.
Everyone will need to wear a hair net.