Mishayla's response these days to so many things. Go brush your hair. Go brush your teeth. Turn your music down. Pick up your room. She reacts pretty much the same way each time.
Most parents would say that reaction when asked to do these things is pretty typical of most 12 year old, 7th graders.
But Mishayla? My sweet little teeny, tiny, premie-baby? Growing up?
Maybe it's because she is so small. When we go to a restaurant, the hostess still pulls out the kid's menu with the box of crayons and coloring books. They would never do that for most girls her age. And she never does color. Tony enjoys the crayons and coloring more than she does. She sips her coke and looks at the menu, picking out what she wants to eat. Just like anybody else.
While it is true she is small in height and weight, if you look closely, she no longer has a little girl's body. She is growing into a young woman.
This clearly is to be expected. Children with Down Syndrome become adults just like any other kid. Yet her growing up surprises me, pleasing me on one hand, and on the other, filling me with a whole host of emotions I didn't expect.
According to Terri Couwenhowen, a psychologist whose expertise is sexuality and children with developmental disabilities, many children with Down Syndrome do not experience the typical drive for independence sometimes until their early twenties, and even later.
But what does that mean, the drive for independence? According to Couwenhowen, this progress begins over time. A child wants to dress themselves, make choices about what they wear, and pursuing their likes and dislikes.
If this is truly a sign of early independence, Mishayla certainly has it. While she will allow me to choose her clothes for her in the morning before school when she is tired and not at all thrilled about getting ready for school, when she wants to, she does enjoy choosing her own clothes.
This can be hilarious to watch. She loves summer clothes more than winter clothes. This would be no problem, other than the fact that during a Minnesota winter, spaghetti strap tops and shorts just don't work all that well. Because of her propensity for pneumonia, which she did have as an infant, this makes Tony frantic, fearing she will catch cold. He finally took all her summer things and put them where she couldn't find them. Luckily, spring is here, so she will be able to enjoy those clothes again very soon.
Sometimes on the weekend, she will change clothes a few times a day. I will find her room looking like it was hit by a bomb, clothes scattered everywhere. Sometimes the outfits she puts together don't look good at all, but really, for the most part, they actually do. She has a pretty good fashion sense.
She comes out of her room, and shows me the outfits. Her face is filled with pleasure. She is finding herself, which as a parent, gives me pleasure too.
And she loves shopping. Loves Target and Walnut, and what 12 year old girl doesn't love Justice? For those of you that don't know, Justice is a store for tweens that has everything from cute fashions to make-up to little trendy toys.
My husband says this is clearly my fault. I admit it. It's in the DNA from the women in my family. I actually wanted a career in fashion at one point. I've always loved it. When I was recently planning my trip to see my elderly mother in Nevada, the first thing my mother wanted to do when I got there was go shopping. So my husband is probably right.
But to me, fashion is a wonderful thing. It's one of the great ways to express who you are, which gives you a strong sense of yourself. It's part of finding out who you are, which she is doing, and I get to guide her, and watch her grow. Lucky me!!
She is starting to take an interest in jewelry, and has a few pieces I encourage her to wear. But she doesn't want to pierce her ears, or wear make-up, although she does look at it in the store. This pleases her father to no end, I know. He's just not ready at all for her to be wearing make-up. Sounds familiar; my father would have a fit as well at that age. And what a battle that was!! So Mishayla is getting there, just a little slower than most girls her age, and thankfully, a lot slower than her mother did!!
I notice her looking in the mirror at herself sometimes. She turns her head one way, then another, surveying herself. It makes me wonder what she is thinking. I hope she likes what she sees, because I think she is beautiful. But the important thing is what she thinks of herself.
Another thing she loves to do is cook, which of course presents issues. Terri Couwenhoven writes that "one of the great dilemmas of parenting a child with a disability is wanting to create opportunities for developing independence without jeopardizing their health and safety." That couldn't be more true than with Mishayla's interest in cooking. She wants to make pizza rolls, but doesn't understand you can't put two pizza rolls in the microwave for 10 minutes. And then of course using the stove unsupervised is out of the question right now.
What I try to do is encourage her to help me cook. She puts the pepperoni and cheese on the pizza. She shakes the chicken in the bag for Shake and Bake. She stirs the taco meat. And of course, because her school is fully included, she is taking a cooking class.
She may never be able to use a stove or oven completely on her own. But it's a start. And who knows?
Parenting any child is a leap of faith. When a child has a disability, it's even more so. But isn't that part of the joy? You expect children without disabilities to do certain things. It's just inevitable. But when a child has a disability, everything they do is so much more wonderful, like a gift you think you may get, but aren't sure, and when you get it, it's all the more exciting.
Mishayla is our amazing gift. She gives to us every day just by being here, and let us watch her grow into herself.
Work Cited
Couwenhoven, Terri. Teaching Children with Down Syndrome About their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals. Woodbine House, 2007.
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