I’m filling out the questionnaire that all parents are supposed to complete before the parent-teacher conference. It has asked me to evaluate my child on various milestones and developmental areas. Does she always draw a circle, sometimes, or never.
My daughter has been getting evaluated since she was 26 days old. At our first meeting with therapists, very kind therapists, my newborn scored very poorly. At three and a half weeks, her gross and fine motor skills, as well as language development, were very minimally developed. “It’s just a baseline,” I was assured. Still, there I was holding my wee girl and her test results, three columns of zeros.
“Can you hop on one foot?” I ask my now three year old. Zeros will no longer do for my scrappy girl and her possessed mother. “Hop on one foot for mommy.” My daughter hops. Check. I still need to do laundry, call my 101 year old grandfather, and pack lunches for tomorrow.
“Honey, can you draw a straight line? Like a letter l?” She draws a line. Check. She’s liking these games. Check one for cooperation skills. Check one for mommy’s growing anxiety. How long can my daughter cut it in the typical classroom? My paranoia starts to ask me if these tests are trying to nudge us toward the door. How many people are in on this? Her teachers, the director of the school, the educational community of SE Portland? Are they giving me this questionnaire (just me, even though every one of the 260 students are also doing them) to make me face facts, that my child doesn’t belong in this classroom?
By the end of the four page questionnaire, I’m a little frazzled. So when I get to the last question–Does anything about your child worry you?— the “Ha!” shoots out of my mouth. It echoes in the kitchen. Who wrote this? I can’t help but wonder. I wonder, too, at the three square inches provided to record these worries.
I have two children. I have worried about my son since the minute he was born. Worry like a burning oil field. Without the worry gluing them together, my bones would land in a heap on the Marmoleum.
My daughter has a Robertsonian translocation. Part of her 14th chromosome broke off and is stuck to her 21st chromosome. She has Down syndrome, though she does not actually have an extra chromosome.
What this means in her life, so far, is not a ton. She follows in her brother’s footsteps, takes the music classes he took, they go to the same preschool, the same swim school. In her time, with the skilled support we are grateful to have, she hits every milestone.
What this means in my life is that, as much of a keyed up, anxiety-ridden mother as I already was, having a child who experiences disability, ratchets it up a notch. Or ten.
Another mother could do it better. This is how I do it:
My daughter’s teachers posts a note on the bulletin board asking parents to bring in a bag of recycled objects–in primary colors–that the children could use to make “beautiful things.” Because I feel like I have to be the wondermom, to offset any additional support my child might require (like, for example, answering her when she says good morning) I take any teacher requests to the hilt. So I bring in a grocery sack filled with bits and objects I’ve rummaged, rooted and reclaimed from closets and drawers, the recycling bins and the Goodwill bags. Strands of of ribbon, a blue lid from a peanut butter jar, yellow yarn, the red metal lid from a jar I was going to save but just recycled the glass instead so I could have another item to bring.
In the days before, I sit down with my daughter on the playrug and tell her that her class is going to talk about pri-mare-ee colors. She nods, quickly, like: “got it.” She says “li-brar-ee colors”. I say pri-mare-ee colors. Primary colors are reeed (pointing to a red block) bluuuuuue (blue block) and yellow (yellow block). She says reeeeed. Bluuuue. And yell-ow. Her “yellow” rhymed with “hello”. I get out the Legos and make piles of red, blue, and yellow. We sort them out. She puts reds with reds, blues with blues, yell-OHs with yell-OHs. I make three towers in pri-mar-ee colors. I hand her a yellow and ask, “Where does this go?” and she puts it on the yellow tower. I hand her a red and ask, “Where does this go?” and she puts it on the red tower.
We repeat this for three afternoons. On the morning we are to bring the bag, we review primary colors in the car driving to school. Getting her out of her car seat, I say, “Remember, today your class is going to talk about pri-mare-ee colors. What are the primary colors?” I prompt her with “reeeeed” and she says “blue and yellow”. Not even yell-OH, just plain old yellow. We’re ready.
We go inside and walk down the hall to the bathroom to wash hands before class – strongly suggested by the school. She doesn’t want to. I ask her if she wants to wash her hands upstairs or downstairs. She wants to go upstairs. We go to the upstairs bathroom, the crowded one, and she walks up and down the bathroom and says no. I point out a stepstool and she says no and then gets on the stepstool. She washes and dries and dries again. And then again. She drops the last paper towel and before I can say anything, she stoops down to get it and shoots a perfect free throw into the trash can. Down syndrome, Schmown syndrome.
Her backpack is waiting in the hall. Another strong school suggestion is that you promote your child’s competence by having them be responsible for their own things. Even so, a lot of parents find themselves carrying their kids’ things, just by the nature of trying to herd the caravan from one place to another.
My daughter, barely bigger than her backpack, carries her own things. Promote competence? Check. Promote other people’s awareness of my daughter’s competence. Double-check. I will not let her be seen not carrying her own backpack. Not even once.
My daughter comes out of the bathroom and starts to dart down the hallway toward her classroom. I stop her. “Do you want to wear your backpack or carry it?” She says carry. I hand it to her. She says no and leaves it, keeps walking. Families and kids are coming from both directions, this hallway is like an airport. I pull us off to the side as people brush past. My eyes lock with hers. “Big girls hold their own backpack. Do you want to wear the backpack or carry it?” She doesn’t answer but starts to fiddle with the straps. I take the opportunity to slip her arms through the straps and buckle the front buckle. She forges ahead like she’s hiking the Alps. My responsible, competent child. Does everyone see my responsible, competent child?
Until my daughter was born, I didn’t know that “typical” was the current term to describe children who do not have disabilities. It’s a nice break from “normal” and I think, more accurate. (I have yet to meet a “normal” person of any age.) It also seems more fair to give everyone an adjective. The more of a dominant group you’re in, the fewer adjectives it seems like you have.
For two years, I took my older son to this preschool, toting my baby daughter along. I didn’t know where my daughter would go to preschool, I’d barely gotten my son settled into his three year old classroom. My worries were about him, would he fit in, would he make friends, would he like it here. Time went on and I saw my girl scooting around the classroom at dropoff and pickup times along with the other younger sibs, pulling herself up to the science table, the puppet table, to things real and pretend. Toward the end of that school year, I asked my son’s teacher–tentatively, so tentatively–if she thought my daughter might be welcome here. Her sincere and enthusiastic yes opened a door of possibility. Maybe typical classrooms wouldn’t work forever–what did we know?–but it would work for now.
So here she is. We walk into her classroom with our sack of materials. Beautiful things will be made. I tell one of the teachers that we brought our primary colors, trying to hide my pride that we are the first people to fulfill the assignment. I do not tell her how my daughter initially called them library colors. Cute if you’re a typical kid. If you’re not a typical kid, it just means you don’t know the right word and that should probably go on your next evaluation.
My daughter knows the word primary. She knows her colors. She knows her shapes, she can count to twenty except for fourteen, identify eighty-five percent of the alphabet and she can draw the letters M and D. In my own personal competition I’m holding in my head, my daughter is one of three children in the class who have not peed their pants during school.
Still, I worry. Afraid that, behind the smiles, other parents are thinking she doesn’t belong. That they will think having her in class takes extra time, when I’ve heard about the children, typical children, in the class who take off all their clothes to go potty and then need help putting them back on, who refuse to go outside for recess, requiring a teacher to sit with them until they feel ready to go.
I just need to keep going. My daughter’s teacher sees our big bag and says, great. She points to a table with a red bowl, yellow bowl, and a blue bowl and says “She can help me sort them.”
Okay, sweetie, here’s our opening. Show them what you’ve got. “Do you want to help sort them?” I ask my daughter, trying to keep the stage parent out of my voice.
Her voice is congenial. “No.”
“I’ll do it too. Want to do it with mommy?” This won’t be as impressive but it’s better than nothing.
She repeats herself: “No.”
C’mon honey, we’ve got this one. We’re all over primary colors. Show them.
She looks over to the puzzle area where someone has set out a new one with a shiny, new, happy, stupid-stinky clown face. She points. “Clown puzzle.”
Her teacher moves her thick earthy braid off her shoulder. She reminds me of someone who could live happily in a yurt. “It’s fine if she doesn’t want to,” she says. Which reflects the school’s philsophy of letting children follow their interests but which I interpret in this moment as the teacher lowering her expectations for my daughter. Next they’ll be saying it’s fine if she doesn’t want to learn to read.
Reluctantly, I follow my daughter and her dawning interest in clown puzzles. “Mommy, sit,” she says, patting the chair next to her. I sit down. The clown smirks at me. I look over at the children sorting my recyclables, ribbons and lids and spools–all these things we once thought we needed, but apparently we don’t.
My daughter and I sit, apart. I don’t yet know that the following week the teachers will ask us to bring things that are orange, green, and purple. And next year things that start with K. And the next year for a live mongoose who recites poetry.
Maybe I’m no different than any helicopter parent. I’m always trying not to hover over my son, although last week I did allow my son to forget his pre-K homework, figuring he might as well learn the responsibility himself while the stakes were low. But I know I never would have done this for my daughter. Couldn’t have risked a slip like that. It’s going to be different, I can see that. I’ll see how much pressure I can put on myself and still save my sanity.
Or who knows? Maybe sanity, too, is something I once thought was required, but it actually isn’t. When you’re overwhelmed, something’s got to go. Maybe I can collect the pieces of my shelled out-peace of mind and fill up a brown grocery sack, find some children, any kind of children, and they could take my remnants and sort them into piles, ooh and ahh at my shimmering discards, take what is no longer needed, and turn it into something beautiful.