Saturday, September 10, 2011

The Gift of Dyspraxia (a letter to my daughter)

Dear Sweet One,
I hope this note from me finds you safe and happy and living your life fully. I could sit down and talk with you about this subject, but I know how much you like to read, and how the written word sticks in your brain longer. So let me write you a letter.
You realize by now that you’re different than the world thinks you should be. Other adults and children have called you names: clumsy, clueless, odd, weird. Your preschool teachers asked me what was wrong with you. Your kindergarten teachers said you had a behavior problem. Some of your Sunday school teachers through the years have ignored you, stood you in a corner, and spanked you. I know you feel like you don’t fit anywhere.
But you do fit. How do I know that? Psalm 139 tells me so. God formed you when you were growing in my tummy. He made you like you are, and it is good. He saw every day you would live before He ever created the world. He knows everything you will think and everything you will say before you even think or say it.
Part of the way God made you the world’s doctors and educational experts call “dyspraxia.” Dyspraxia is considered a “learning disability” in most circles, but I prefer to think of it as a learning difference. The way God wired your brain differs from the way He wired other people’s brains. This different wiring means that you process information, or learn, differently than others do.
The grown-up definition of dyspraxia, sometimes called “developmental coordination disorder,” goes like this:
Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks. Generally, individuals with the disorder appear “out of sync” with their environment. Symptoms vary and may include poor balance and coordination, clumsiness, vision problems, perception difficulties, emotional and behavioral problems, difficulty with reading, writing, and speaking, poor social skills, poor posture, and poor short-term memory. Although individuals with the disorder may be of average or above average intelligence, they may behave immaturely. (From the National Institute of Neurological Disorders and Stroke at http://www.ninds.nih.gov/disorders/dyspraxia/dyspraxia.htm)
The list of symptoms that signal dyspraxia looks like this:
·         Exhibits poor balance; may appear clumsy; may frequently stumble
·         Shows difficulty with motor planning
·         Demonstrates inability to coordinate both sides of the body
·         Has poor hand-eye coordination
·         Exhibits weakness in the ability to organize self and belongings
·         Shows possible sensitivity to touch
·         May be distressed by loud noises or constant noises like the ticking of a clock or someone tapping a pencil
·         May break things or choose toys that do not require skilled manipulation
·         Has difficulty with fine motor tasks such as coloring between the lines, putting puzzles together; cutting accurately or pasting neatly
·         Irritated by scratchy, rough, tight or heavy clothing
(From the Learning Disabilities Association of America at http://www.ldanatl.org/aboutld/parents/ld_basics/dyspraxia.asp)
Sometimes, dyspraxia is included with the sensory integration disorders, or sensory processing disorders. (It gets confusing because the names change so often.) You have a little of all of them: auditory processing difficulty (the way your brain decodes the signals it takes in through what you hear), visual processing difficulty (the way your brain interprets the signals that come in through what you see), and vestibular processing difficulty (the way your body determines balance and movement based on the space around you).
So what does all this actually mean for you?
It’s hard for you to catch a ball. Although you love them, monkey bars are frustrating for you. You get physically tired easily because your brain works so hard to give you coordinated movements. It takes extra brainpower for you to judge how far away things are, or how close they are, or how high up off the ground you are. These abilities are called “spatial awareness” and “depth perception.”
It’s hard for you to tie your shoes, or button a shirt, or zip a jacket. You can do all those things, but it takes a little bit longer and makes your brain tired. Many clothes feel uncomfortable to you. You prefer to stay in your pajamas because they’re made of just the right materials with no buttons, ties, or snaps.
You don’t enjoy jigsaw puzzles. You can do them, but like the shoelaces, they take too long and tire out your brain for other activities. You have to work extra hard in crowds to understand instructions and follow them. If the crowd is noisy, you cover your ears and try to find the nearest way out. You don’t like people bumping up against you or tapping you from behind. (I don’t like that, either.) If the room has the long-tubed fluorescent lights, your head starts hurting, which makes you feel irritable.
You know how you can remember tidbits of information that you read in a book three years ago (long-term memory), but you don’t remember something I told you this morning (short-term memory)? That’s dyspraxia. It affects your short-term memory so that you can only remember immediate things. That’s why repetition is so important for you. When you practice how to do something over and over, the instructions move from your short-term memory, which isn’t so reliable, into your long-term memory, which is very reliable.
Dyspraxia is why when you sit down on the couch with me or Daddy, you tend to sit on us instead of beside us. Dyspraxia is why you would rather staple cloth together than sew it. Dyspraxia is why you don’t like to cut your nails, brush your hair, brush your teeth, or get a haircut.
From all this information, it seems like there’s a lot wrong with you, doesn’t it? Let me put a different spin on things.
First, let me assure you: you are not the only person with dyspraxia. Daniel Radcliffe, the actor who plays Harry Potter, and Hannah McDonnell, an actress in Dublin, Ireland, are just two of the many people who live with dyspraxia. I think you would like Hannah. She founded the See-Saw Theatre Company for actors with various kinds of disabilities. In an interview (http://www.independent.ie/health/hannah-youre-not-wrong-and-youre-not-broken-1673538.html) a few years ago, she said, “The thing you have to remember is that you’re not wrong and you’re not broken. You're just different in how you experience life.” I think we should make a poster out of that quote and hang it in our house.
Along with your dyspraxia and other learning challenges, God gave you character super-powers! You are persistent, determined, and creative. You are one of the bravest people I know. I’ve watched you consistently befriend the kids who are on the fringes of the crowd because you notice them when others ignore them. You are kind and compassionate, and your heart is so tender. These aren’t characteristics we taught you; God gave them to you.
It took you a long time to learn to ride your bike without training wheels, but you did it! You struggled for so long to read, and now you can read 200 pages in one afternoon! You gathered your courage and tried the highest slide at the water park and the highest diving board at the pool, and you love them! There are so many abilities you have and so many things you can do. You just do them differently than other people.
Instead of being a disability, for our family I see your dyspraxia as a gift. Dyspraxia makes us slow down, take our time, and pay attention more than if we lived life like other people do. As a family, we work hard to look for the “why” behind our actions and to find words to describe our feelings. We have to work together to find creative solutions for the difficulties dyspraxia brings us every day. If you didn’t have dyspraxia, I don’t think you and me and Daddy would be as close to each other as we are because we wouldn’t need each other so much.
In the 11 years that I’ve known you, God has used you to transform my world. I thought I knew what kids were supposed to look and act like. I thought I knew how to teach reading and writing and arithmetic. I was wrong.
Your Daddy and I recognized a long time ago that parenting you the way we had been parented and teaching you the way we had been taught wouldn’t work for you. Raising you the way other people thought we should was squishing you as a person. God made you; He knows the plans He has for you—good plans for your well-being (Jeremiah 29:11)—so it only makes sense to run to Him and ask Him what to do and how to help you. Only God and His Word—His working in our hearts and lives, arranging our days, leading us to health and wholeness in unexpected ways and by unexpected paths—gives life to us.
I’m glad we need each other like we do. I’m glad God included dyspraxia when He created you and sent you to us. He’s giving us everything we need to live our lives fully and meaningfully, even if our lives don’t look like any other family’s that we know. We’ll keep asking Him which way to go next—“What now?”—and He’ll keep showing us. What an adventure!
I love you, and I am so privileged to be your mommy.

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