Wednesday, April 28, 2010

Where were you on the night Orville Redenbacher disappeared?

Under the bright lights, in a small room, late last night, this is how it went down:

G: K., want some popcorn?
K: No thank you.
G: I'll save you some, just in case.
K: It's okay. I don't want any.
G: I'll leave the bag right in front of you, in case you change your mind.
K: (pushing it away) I don't want the bag. I'm eating oatmeal.
G: But you might change your mind.
K: I won't change my mind.
Me: G., leave him alone. He doesn't want popcorn.
G: But he might change his mind.
Me: He's not going to change his mind. Don't ask him again.
G: Why not? That doesn't make any sense. I change my mind!
K: G.! Stop it!
Me: Leave him alone.
G: (Becoming agitated) That's too weird! Why can't he change his mind? Everybody else does!
Me: You're getting on his nerves. Just stop talking about it.
G: (in a whisper) I'll just hold this last popcorn kernel in my hand and save it, in case he changes his mind.
K: Aaaah!

There was nothing left for K. to do but leave the room so she knew that he was serious. I say: good for him for staying under control. Anyone would have been tempted to deck her, or alternately, hire her as an interrogation specialist. Her persistence could shake the cool of the most hardened criminal. Have I ever told you how many months it took to wean her off the sippy cup? Or, on the flip side, how quickly she learned to jump rope, ride bike, and roller skate? There is no stopping, or starting, this kid. She sets her course, and we can only pray it's a good one!

I asked for the sweaty, squished kernel in her fist. She popped it in her mouth and that was that.

G: You made me do that. It's too bad. Now if he wants one, there won't be any left for him!

Sigh. Well, her heart is in the right place. On her watch, her brother might have to fight for his sanity, but at least he'll never go hungry.

Tuesday, April 27, 2010

Crowds, carrots, choruses, and inconsistent capabilities

My friend shared a Youtube video of a teen with Aspergers with me. The boy says Aspergers means he's half and half: sometimes he's like everyone else and sometimes he's autistic.

I see that with my kids. K. hates crowds. He can't stand eating in a restaurant, or even the lunchroom, but he did five straight days of Walt Disney World. He ran away when his class went to the symphony because he was afraid he wouldn't be able to sit with his friend, but when I took him a few weeks later, even though there was a mix-up with our tickets, he was cool as a cucumber. Sometimes when I pick him up from school and see him talking to himself or zigzagging through the hallway, I think: is this the same articulate kid who tells me how to save the planet over dinner? Yes and no. Half and half.

That could go for most of us. I'm half-typical and half-terrified. I vacillate between thinking I can overcome anything, and thinking I should focus on my strengths and cut my losses.

Like Saturday night at the grad banquet. The staff always serve all the students their plates. I'm not anti-service. I would have stood in the kitchen and dished every baby carrot onto every plate with my pinkie, but interrupting their conversations with relatives I've never met, in order to lean over them (was that serve from the left, clear from the right?), and then put their plate down without spilling white wine sauce on them, that's stressful. But, hey, I could have climbed on stage and given a speech (something that would make most people wet themselves) no problem. What's that about?

I made it through waitress duty, but then came the worship band. Seeing every other God-lover in the room sing like they could actually see the face of God on that Powerpoint screen, made me want to run out of the room, just like K. does when the math problems get too hard. I did turn to leave for air, but the person behind me, her hands raised and eyes closed, was blocking the aisle. Listening to worship choruses is supposed to make me feel close to God. Give me a lecture or commentary over music any day. Worship music does affect me, probably the same way touch or eye contact affect many with autism--it cuts too deep. Interestingly, hymns, with their nostalgia, theology, poetry, and four-part harmonies blending, don't have the same effect.

So, who am I? Who are my kids? Are they typical or unusual? Are we capable or stuck? It depends.

Just because it's cordless, doesn't mean we're not tied together

I'm attached to my kids at the hip--at least when that's the pocket where I've put the cellphone.

Apparently the school was trying to reach me all morning because K. was crying that his mouth hurt. Probably canker sores. When I finally talked to the principal at lunchtime, she said they'd run out of ice packs and Popsicles. So there went the entire morning (the only time he has an E. A.) of educational possibilities out the window.

Friday he didn't get anything done in the morning because he was too tired, so we put him back on Melatonin (herbal sleep remedy). All last week he had regular blowups before lunch, but I'm grateful that the staff diffused the situation and just informed me about it when I picked him up. On Thursday they would have called me, but they thought I was teaching in another city, so I enjoyed my day off in blissful ignorance of the ten-year-old tornado one block away.

Unlike many other mothers I talk to, I don't often have to go in to fix things. But the school does want me to be waiting on the other end of the line. Poised at any moment to give the teacher ideas, comfort K., adjust the meds, confer with the psychiatrist, or take K. home if necessary. The beginning of the school year was the hardest: I had daily phone calls telling me what a hard time he was having.

Today I let them down: I forgot that my cell was still on vibrate (from the graduation ceremony I was involved in on Sunday) when I went for my physical and the groceries, and I forgot to take my cordless outside when I was snipping and bundling apple tree branches. (In my defense, I did check my answering machine regularly.)

I feel like a C.E.O. tied to my phone, except these aren't my employees, they're my children. I thought once I sent them to school full time I would be free to make my own plans.

And I can, as long as I keep the ringer on.

Monday, April 26, 2010

Shall I play for you? Pa rum pa pum pum

Margaret Mead wrote, "No recorded cultural system has ever had enough different expectations to match all the children who were born within it."

I discovered quite quickly that, while society says that it's okay to march to your own drum, our schools can't handle more than one rhythm per classroom. There just aren't enough conductors. We say that we want kids to be themselves and follow their heart, but what we really mean is, "Follow instructions and do whatever the rest of the class is doing."

Before school, I thought it was great that my son expressed himself artistically. When he started Kindergarten, if the teacher asked him to paint a red circle, a detailed pencil sketch of a maple leaf's cellular structure just didn't cut it. "Making breakfast" at the play stove for the girls wasn't appreciated for the chivalrous gesture it was, if it happened to be during "O Canada" or a lesson on "ing" words.

It's a difficult task, encouraging your quirky children to express their own strengths--and letting them face their weaknesses in their own time--when you know if they don't tone down the quirks and turn up the conformity, they will get labeled and left behind. Love them for who they are, or protect them from the consequences?

In the past few weeks, both my kids have wandered or run off during school field trips. For one, the stress was too much to handle and he had to get out; for the other, the enticement of what was through the next door was too much to resist and she had to go in. So now, I'm in charge of finding, or being, the caregiver for their field trips, or they can't go. It's a safety issue. The school just doesn't have enough full time education assistants to provide one-on-one all day supervision; if they would assign someone to my child, the child at another school who needs that EA for half the day would have to stay home--hardly fair to them. Not easy for me either. I'm just starting a new job (writing/editing!) and have to be available to my employer whenever she needs me. Practically, I'm sure it will work out in my schedule, but emotionally it feels like a burden.

Unlike Ms. Mead, I've always thought that there were too many expectations on our children, but I think her reflection is more accurate. We need to have more expectations: we need to expect that some children will be more interested in being loving than it spelling "ing." That some children are born to find environmental solutions or make technological advances, and the fact that they can't "colour in the lines" is exactly what makes them able to see outside them.

I have no doubt that my kids' teachers hear the music of many drums. And they encourage short solos whenever possible. But they can't always catch the little drummer boy when he marches out of the building on their own.

All any of us (typical or autistic, young or old, parent or teacher) can do is play our song to the best of our ability, listen to the songs around us, and blend whenever we can. "I played my best for him...Then he smiled at me...Me and my drum."

Tuesday, April 20, 2010

Message in a bottle

You're worried. Your son enters the grade one class every day and goes straight to the play corner as if no one else exists. He doesn't put on his shoes, stand for "O Canada," or look at his teacher when she calls his name. When you try to get him to read a book or answer a question ("How was your day?"), he repeats last night's cartoon--word for word--and won't stop no matter how many time you tap or call him. You know he's smart--how else could he remember so many television and radio scripts?--but you have no idea why he won't follow school routines, interact with classmates, or complete simple assignments. You try reward charts, time-outs, and, though you're not proud of it, yelling to get his attention. Friends say, "Just love him and he'll come around," but you know your love isn't getting through.

You're worried. Your daughter is in grade two and doesn't read at all. Every morning she says, "I hate school. No one likes me." When you hand her her jacket, she kicks you. She gets frustrated in math--yelling "I can't do this!" and running out of the room almost daily. She wants to learn piano, but when she sits down to play, she looks at the music book, her face fills with tears, she bangs her elbows on the keys and runs out the front door. She hides in the change room during gym because she doesn't understand the new tag game. When friends come over, she tells them to leave; it seems she's worn out from school and has given up on figuring out how to play. You wonder: does she have a low IQ? A high IQ with a learning disability such as dyslexia getting in the way? You try everything. You spend hours encouraging her to sound out the next word. And you pray.

Then one day you try something that changes everything. Your son looks you in the eye and says he had a great day. Your daughter jumps six reading levels within a few months. She runs to the piano every day after supper, plays each scale and song twice, and then makes up her own composition and calls the family for a concert. She invites her friends over and lets them choose the game. Your son learns to carry the one and your daughter learns to use her words. What happened? Was it a miraculous healing? A new parenting technique?

It's medication. The stuff people fear ("It'll make them zombies."), ridicule ("He's a poster child for Ritalin."), and scorn ("Parents drug their kids because they don't know how to give them a good whooping.") I was afraid to try it too, so I did my homework.

Here's the truth: at the correct dose it doesn't make kids zombies. Kids who are overwhelmed by all the instructions and expectations around them are more likely to "tune out" when they aren't medicated. Methyphenidate doesn't make kids sleepy; it wakes up the part of the brain that allows them to focus on non-preferred tasks (every kids can focus on video games) and regulate their emotional reactions. The side effects of stimulant medications like Ritalin or Concerta are decreased appetite, difficulty falling asleep, and occasionally headaches and increased blood pressure; the prescribing doctor will assess the child's growth and blood pressure regularly. The good thing about stimulants is that they pass through the system quickly, so a short term med. trial will not have lingering side effects, and, if it's what the child needs, the positive effects will be apparent immediately.

To those who accuse me of medicating my child because I'm too incompetent to discipline them, I say: punishing a child with ADHD for not coming when you call them or for becoming frustrated with their schoolwork is like spanking a child in a wheelchair for not walking up the stairs. In the years B.C. (before Concerta) my kids were not able to get from the table to the sink without forgetting that you told them to brush their teeth when they got there. Now between the medication, the pictorial schedule, and a mom who patiently understands their limitations (rather than thinking "They should know this by now and I'll look like a wishy-washy parent if I don't make them do it right!"), they can get ready for school by themselves.

Do I like medicating my kids? No. But my greatest fear is not the side effects; it's the world's judgment. Would you medicate your child if it had such a wonderful effect on their ability to follow instructions, learn math, read chapter books, control their anger, brush their teeth, play tag, make friends, fit in, and enjoy life? Maybe. Maybe not. Maybe you'd try every parenting technique you could find first. I did. Maybe you'd try every diet and herbal remedy first. I didn't. Maybe after years of being kicked and ignored, you'd find relief in the realization that your kids don't hate you, they just couldn't hear you!

Maybe you would never try medication. But I hope you have compassion for those who do. You have happy, successful children. That's all I want too.

Monday, April 12, 2010

Of mice and me

Every now and then, when things slow down, it's good to stop and think about what brings us the most joy. I enjoy teaching, but what I want to leave with the world is my writing. More than seeing the final product (which I pray doesn't involve a tacky cover photo of a flower or sole distribution in squeaky, spinning gas station map racks), I want to experience the creative process. I want to go nutty in a happy way, to talk to fictional characters as if they're in the room, to rush to my computer in the middle of the night because I woke up to a great line, to get lost in the creative “flow” and learn to breath under water.

I started a new blog called "37 Mice" ( to face the cords that tie me back as a communicator and to identify the divine gifts ("mice") that will free me to write. I'm hoping the accountability and challenge of "37 Mice" will overcome my inhibitions, either releasing me to finish my fictional story (the one that's lurched and stalled the last few years), or becoming a beloved story in itself.

Since the new site is all about, and for, me as a writer, I decided to focus around my experience with parenting and disabilities—which most of the posts already do. I’m also trying on a new name, “Plaiditudes,” short for “plaid attitudes” (a term my husband and I thought we coined sixteen years ago, but either we were trendsetters or other great minds think alike, because it’s now in the dictionary.) Since I’ve been “New Ange” for a few years already, my husband suggested I could only honestly claim to “newish.” The reality hasn’t changed; God hasn’t stopped transforming me: I’m a new-er Ange every year. However, the number of people on this globe who just can’t wait for their weekly scoop on Ange (the old or the new) is limited, but there are many facing or caring for someone with a disability, and many others who can find encouragement here for any challenge, weakness, or difference. If your life is “easy-peezy, lemon-squeezy” (as my son’s third grade teacher would say), come along anyway for the interesting stories.