Monday, October 11, 2010

A time to love

There is a time for everything,
and a season for every activity under heaven...

a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

a time to search and a time to give up,
a time to keep and a time to throw away,

a time to tear and a time to mend,
a time to be silent and a time to speak,

a time to love...

I don't like getting flowers. Oh, I love flowers. I spend hours playing in my beds of daisies, roses, lavatera, petunias, and flax. But I don't love receiving bouquets because I don't have a lot of counter or table space. And most cut flowers come in my least favourite colours: pink, orange, and purple. My kids ensure there's enough mismatched clutter on every flat surface without anyone sticking vases of orange everywhere. I feel guilty, but when I stare across the table at flowers where the face of my husband should be, inside I'm chanting: "Die. Die." (To the flowers, not my husband.)

And I don't always like getting hugs. Sometimes it feels like I'm being held captive (particularly if they come when I'm in the middle of something), other times it feels like bugs crawling on my skin. I love the thought that comes with a hug: "Oh, he or she must really care about me," so I don't want people to stop doing it. But the feeling is sometimes kind of icky.

I don't always like complements, either. If they are specific ("You have soft hands." "I loved your story on kids with anxiety disorders."), I know the person has thought through it, and I assume they are sincere. but if their praise is too general ("You look nice." "You are a good writer."), I wonder if they really mean it or if they have a motive for their flattery. (Incidentally, parenting experts say we should be as specific as possible in our praise to children: "Your floor looks so clean" sinks in farther than "Good girl!" Maybe I think like a kid.)

So, if you are up on your love languages, you'll know that mine is not gifts, meaningful touch, or spoken words.

I have many friends who care about me. I can call them for prayer. They ask how I'm doing. They hug me every Sunday at church. I feel loved.

And lonely. Because my love language is time.

Most of my friends are married with several kids, a full time job, a house (in many cases, on the other side of town), community and church involvements, and extended family (maybe even parents or grandparents needing care). The one thing they don't have is time.

Unless...they are campers. Camping is all about time. Things we normally rush through, like cooking, washing dishes, making beds, are slowed, simplified, and done together. We have time to gather stones, time to speak, time to embrace, time to stop in the middle of the highway and take photos of a giant snapping turtle, who is also very slow.

We bought a camper trailer this fall. It's old. It's cramped. The first time we set it up at a campsite was in the dark, in the freezing cold, with both kids running wild. The second day we broke the light fixture (wiring was worn) and two flashlights. We bought another one at the campground store. And we broke that too (kids mistook it for a lightsabre). We were dark. We were cold. We were together. And I'm glad.

A while back, I asked my pastor to pray that I would make a new friend. Lucky me, I met a camper.

My kids get along with her kids. My kids get along with their dog. Our husbands have things in common (Blah, blah, Mac OS, blah, blah, Windows updates). We spent the weekend together in the bush collecting rocks, roasting marshmallows, and taking pictures of creeks and waterfalls. (And dragging angry turtles off the highway by the tail.) I don't know what we'll do next.

But we have time.

Thursday, September 23, 2010

There'll be scary school stories and tales of the glories...

When Staples decided Back to School was "the most wonderful time of the year. Fa la la and ho ho ho," they didn't poll parents of children with special needs. I much prefer having my kids in my hair all summer to being on a short leash tethered to an elementary school and on the speed dial lists of an entire educational team.

And being around all the other typical families in the hallway and playground makes making comparisons far too easy. So, rather than fighting it, I'm going to go with it.

I shall now compare the school-related concerns of two equal, yet different populations: Parents Of Neurotypical Kids (I'll call them ponks), and Parents Advocating For Unusually Needy Kids (pafunks). (Yes, that's the best I could come up with. How many hours do you think I have to budget for acronyms?) My purpose, as always, is not to cause offense or enlist pity, but to stir up gratitude and understanding in my typical-life friends, a sense of "someone else gets it" in my fellow advocates, and a sense of humour in myself. (I know it's in here somewhere....) To entertain you. And, of course to vent. Because we all need that sometimes. Please, indulge me.

So allow me to present (through the wonders of that intimately distant, anonymously exhibitionist tool called the internet) the conversations that happen only in my head:

PONK: I hate packing lunches.
PAFUNK: I wish my kid could stay for lunch, but the EAs are on lunch break.

PONK: I hope my kid gets a speaking part in the Christmas play.
PAFUNK: We just hope our kids will be allowed to participate in the chorus, and if they do, that they don't fall of the stage when they start to spin.

PONK: I'm worried my kid will follow the crowd.
PAFUNK: Following the crowd is how kids learn to be kids: it's why I wore neon pink gel shoes in 1985 and threw them out in 1986, and why I stopped picking my nose in Kindergarten (okay - first grade). I wish my kids would take more notice of other children and learn to socialize, play, dress, and talk the way they do. G. used the term "freaked out" last week, and I almost baked a cake.

PONK: I'm nervous about the grade 5 sex ed. curriculum. I hear it mentions masturbation.
PAFUNK: Ooh, big deal. There are many parents who've had conversation with school staff about teaching appropriate (bed)/inappropriate (front of the classroom) places for self-stimulation since Kindergarten. They're thinking: Been there, wrote the social story. Chill.

PONK: I'm not sure my kids is getting grade 3 math. How will he ever become a brain surgeon?
PAFUNK: We're happy when kids on the spectrum manage the sensory overload in the classroom long enough to hear 3 minutes of math.

PONK: I hope my kid has a nice field trip.
PAFUNK: I pray my child is allowed to go on the field trip despite short staffing. And if she does, that she won't wander off downtown and get lost this time, or run into the street and narrowly miss being hit by a bus.

PONK: My kid was sent to the office for talking back to the teacher.
PAFUNK: Our kids are sent to the office every day. If no furniture or staff are permanently damaged in the process, we don't even ask.

PONK: There are like one or two inservice days every month when the kids can't be at school; it's hard to find childcare.
PAFUNK: There are so many days when we're transitioning into a new classroom, adjusting to a new medication, weaning off a bad medication, or wearing out at the end of the school year, and he can't be at school all day; it's almost impossible to find childcare.

PONK: I'm not sure whether I should give my child this cold medication or just wait it out. What if it's bad for her?
PAFUNK: This medication he has to take daily in order to function....I hope he doesn't have to stay on it long term...I don't want it to make him suicidal or diabetic or grow horns like the doctor warned it could.

PONK: I'm nervous about parent-teacher interviews.
PAFUNK: Every day is a parent-teacher interview. Every time I walk into the building, I get the good news/bad news report. Some days I get asked whether something's "going on at home." Other days I get a "you need to try another medication" message. Some days the staff walk away from me in frustration; other days we almost hug and sing Kumbaya right there in the hallway. At the scheduled parent-teacher nights we just smile and wave.

PONK: My baby is going off to kindergarten/college. I cried that whole first day because I realized my baby is growing up.
PAFUNK: I have friends who have had to put their kids into foster care because the child's autistic meltdowns were putting their marriage or their other children's lives in danger. They cry every day because their baby is gone. I get the melancholy and mental adjustment of sending kids to school for the first time, but please don't be hurt if I save my sloppiest tears for others.

PONK: I'll do anything to help her succeed. Some days, it takes everything I have.
PAFUNK: Me too. Now we're talking.

Where pain and theology meet

I was at a staff retreat at Gimli last week. (Two days of adult conversation - yippee!) Our first exercise was to share with each other a time line drawing of all the major ups and downs of our lives. Happy things above the line; painful things below.

Because most people were in pairs, and we were the odd group of three, there was less time to give each other feedback on our stories, but what I did get from the man and woman in my group was this reaction:

"Whoa, we haven't lived through nearly as many things as you have."

She was middle-aged. He was in his 70s. I'm a fresh 37.

Here are a few of the alternating lows and highs of my short little life: my brothers' Fragile X Syndrome, discovering the clarinet, being the target of school bullies, the spiritual high of my baptism, my Dad's illness which peaked when I was 14, working at summer Bible camp, an utterly lonely summmer mission trip to Bavaria, marriage, miscarriage, seminary, multiple periods of unemployment, motherhood, the autism and ADHD diagnoses, the start of my writing career, overwhelming teaching stress, my wonderful church, my grandparents' deaths. And that's just the stuff I'm willing to talk about.

One of my partners in the staff exercise said, "So much has been out of your control." That's why I've become a fan of the sovereignty of God - I find the idea that all the messy details of my life, like those of the man born blind in John 9 - fit snugly into the big picture of God's glory - contrary to most Mennonites who focus on the randomness of pain as caused by fallen humans exercising free will. I resonate with a God who's in control, because I know without a doubt that I'm not. Life throws stuff, and I barely have enough time decide which way to roll with it.

I find it interesting that some people facing hardship swing toward thinking God had nothing to do with it. The idea that God may have a purpose in their pain is offensive to them. The thought that God sends angels to steer some careening cars and not others to them smacks of divine favoritism. They would affirm that "God is present in this, but he sure didn't send it."

Others, like Russ Toews whose son committed suicide say,

"God is sovereign. Nothing happens that is outside his control or that he does not allow.

"I find when I talk this way, particularly in light of my son’s death, many people become uncomfortable. They quickly point out that God is not the author of illness, death, or bad things. I’m not arguing with their point, but you may be surprised to hear I don’t find comfort in the thought that God did not cause my son’s death....

"I do find comfort in knowing that someone is in control, that life is not just a series of random events, some good, some bad. I find comfort in knowing that even though bad things happen, there is someone who has seen ahead everything that will happen and allows it. Brad’s death did not catch God by surprise, as it did us."


I resonate with Russ' words. I too find no comfort in someone saying that God didn't choose or cause my children's disabilities. Autism and ADHD are so intertwined with little personalities, it begs the question: then who did God plan to send our family anyway? And where did that person go? If God didn't intend to bring glory through their unique struggles, triumphs, perspectives, and gifts, then what's the point?

It's interesting how our emotions, particularly grief, can shape our theology so profoundly, and yet take us in such different directions. It has implications for how we choose words of comfort - with our ears screwed on tight. And it has implications for how we discuss theology - with sensitivity; any debate on divine sovereignty might mask a cry for a lost son. May my words fall softly.

Two things I know for sure: no matter which side we emphasize - the human choice or the divine - we all need to hold both in tension; both are evident in Scripture (See Exodus 7:3 - God hardened Pharaoh's heart, 8:14 - yet Pharaoh hardened his own heart, 11:9 - purpose: God's glory) and our experience. And secondly, as long as we're talking to him and each other in our grief, the glory and comfort will flow, whether we call him "present" or "sovereign."

He is.

Wednesday, August 11, 2010

Just eat it

The kids have been on the gluten-free diet for 3 1/2 weeks. I've been surprised at how little they've resisted. They're both rule-oriented, black-and-white thinkers, so when I said, "This is what we're not eating anymore," they went with it. K. had a couple teary events where he saw someone else eating cupcakes or cookies and I didn't have the gluten-free version handy, but for the most part, it's been pretty painless.

(I can't say I've noticed a lot of change in their behaviour, but it can take 3 months to tell. And the summer is a low stress time. The proof will come when school starts.)

It's hard to get G. to eat at the best of times because she's so sensitive to tastes and smells, and it doesn't help that now I've narrowed her list even further. She used to eat a lot of rye bread and Kraft Dinner, which are now on the naughty list. She likes turkey bacon (if it has hidden gluten, I don't want to know), chocolate milk and peanut butter smoothies, mango yogurt, and fruit (preferable from a tin).

It's also hard to get her to sit still at the table long enough to eat much of anything. So here are some ideas I've learned for how to get kids like G. to eat:

Location, location, location:

If they won't eat much when they're at the table, give it to them where they'll eat it. Make them popcorn in front of the TV. Feed them in the car. When there's playing to do, it's hard to sit still and eat, but in the car, there's nowhere to go. I always take apples, bananas, and juice boxes, even on short rides to return library books or pick up T. from work. I know how easy it is to eat more than I mean to when I'm mindlessly watching TV or driving, so think of those times when you shouldn't be eating, and those are the best times to get kids to eat more.

Hands on experience:

I planted green beans, snap peas, and carrots this spring. We all know that homegrown produce tastes best, but I don't think it's just because it's fresh; I think being part of growing the food adds something sweet to the mix. We all love to enjoy the fruits of our labour. I make sure to advertise at the table that these are the beans you watered and your brother picked. Their own beans have a better chance of making it onto a fork. Same thing for the bread they baked or the cereal they chose.

What they don't know, won't hurt them:

You can hide veggies all over the place. For K.'s birthday cake, I made gluten-free dark fudge brownies that have a whole can of pureed black beans hidden in them! I tried hiding spinach in my meat sauce. It stuck out like a bunch of green leaves, actually, but it tasted really good. Shredded carrots camouflage better. Some cake recipes allow you to replace the butter with applesauce. A banana muffin is still healthier than a plain one.

A snack by any other name sounds grosser:

I learned this one from Calvin and Hobbs. If you tell a kid to eat a "rice cake" they will yawn; if you tell them you've invented edible Styrofoam, you'll have to run out for a second bag. "Drink you water" is boring, but "Drink your monkey spit" - now that's cool. We think up crazy names for everything. Not only do more things get eaten, but it releases pressure and lightens the mood for everyone.

Wednesday, July 21, 2010

The gluten free trial - order in my kitchen!

I started the kids on a gluten free diet the day they got back from camp. No wheat, rye, or barley. That means no tin soups, bargain cereals, donut shops, free wiener roasts, pizza parties, baking from the snack table after church, unless I bring all my own homemade/overpriced hot dog buns, wieners, pizzas, and baking.

(I'm not really a baker, but I have to admit the gluten free cinnamon buns turned out better than most things I've made. You can find the recipe here: The dough (batter) is so sticky that I had to roll and lift the buns using plastic wrap, and the final version looks lumpy, but they taste oh so melt-in-your mouth good.)

This is so unlike me. People have been telling me for years that if only I'd get rid of food colouring/artificial flavours/preservatives/gluten/dairy that autism and ADHD would disappear and my family would walk hand-in-hand into the sunshine. And I got mad.

And I got doctors. I've been doing the medical thing for the past 5 years, particularly this year, since we've had weekly access to a child psychiatrist (who once played a Meti girl at Lower Fort Garry and has a twinkle in her eye like she still could). As the diagnoses piled up, it took me a while to get comfortable with her (Why do you see so many things that I'm not ready to accept yet?); once I did, I've come to trust her judgment.

But even twinkly, trustworthy psychiatrists make mistakes. Because with drug trials, no one knows the right answer till the test is done. We've had some frightening, frustrating (thankfully - temporary) side effects.

We're looking for something to "loosen the glue" of perseverations/fixations. ADHD medications can help kids concentrate, but they don't tell kids what to concentrate on! Kids on the spectrum feel more relaxed when they can draw/talk/learn/think/read about their own interest. But in order to feel successful at school, K. has to spend a least some time drawing/talking/learning/thinking/reading about what the teachers and classmates have in mind. He want to fit in and feel a sense of accomplishment, but that world-altering super ion suit will not wait in the corners of his brain until home time! It begs to be drawn....on a Dixie plate or paper towel if necessary!

The medication options are antidepressants, which can cause suicidal thoughts or aggressive behaviour, or atypical anti-psychotics, which can lead to tick disorders, high cholesterol, obesity, diabetes, cancer, breasts (!), and just generally: death. So either you want to be dead...or you are. Okay, I'm exaggerating: the serious side effects are very rare, usually only appear at high doses or over longer period of time, and most of them (other than the tick disorder and, of course, death) are reversible. But it doesn't keep a mother from lying awake worrying about them.

Lately, I've been meeting more people who've asked, "Have you tried gluten free?" One was a therapist and the sense I got was: if you're willing to take all these medication risks and expenses, why aren't you willing to try a little risk-free inconvenience? The other was a parent whose child was diagnosed overseas, and the leading autism specialist there told her to "Take him off gluten and come back in three weeks." It made a world of difference in the child's behaviour and character. Since then I've read books about kids who stop screaming and start making eye contact for the first time after a few weeks off gluten. Lately, autism has so crimped our quality of life, that having to carry my own cookies or hot dog buns in my purse feels like nothing!

Now, I'm not becoming a barefoot, bra-less, granola-chewing hippie (although, come to think of it, they were pro-drugs, weren't they?). I still believe medication can be safe and helpful. I'm just not ready to try another option on the antidepressant/anti-psychotic list. And I'd like to be able to tell the "Have you tried gluten free?" people: "Yes, and it was the best thing (or the dumbest waste of time) ever!"

I'll let you know which in a few weeks. By then I may be guilty of contempt of kitchen. If you need me, I'll be smothering myself in rice flour and cinnamon....

Saturday, July 17, 2010

Here's to my week of feeling human again

The kids were both at overnight camp this week. They had great workers (Can I keep them?) who stood up for them and stuck by them and they (the kids and the workers) made it the whole week!

It's amazing the difference I felt in my body without them here.

I was present. I could feel the fishcakes I was forming in my hands; smell the grass I had mowed, sing along with the music (not straining to hear what was happening in the next room). Tension-free. Soft.

I could make supper without thinking about how much T.V. they were watching to make that possible and how much they were going to "Ew, gross" it when it was done. I could wash windows outside without worrying about what kind of trouble they were getting into inside. I could run out to buy clothes, take a walk, meet a friend - all without phoning through a list of 7 names first to find a babysitter!

Best of all, I could read for hours without feeling that I really should be giving K. and G. something right now: nutrition, exercise, math practice, rest, attention, a play date, or new underwear. Everything feels lighter and brighter when you are just you and not the physician/chauffeur/mediator/teacher/psychologist/advocate/entertainer/police officer/receptionist/chef/personal trainer/maid/nurse/bodyguard on call.

Here are some of the things I didn't do this week:
  1. A load of laundry a day.
  2. The whole bedtime "Get in the tub, out of tub, to the table, to the bathroom, into bed, before I count to three" routine. (Gah, that whole ending can take the shine off the best day.)
  3. The "He didn't mean to hurt your feelings, but you have to stop bugging him now" conversation.
  4. The daily wipe-off of toothpaste splatter on the bathroom mirror, counter, and, sometimes floor.
  5. Any work after 9 pm!
Here are some of the things I did:
  1. Met my cousin for coffee. He always makes me feel like a beautiful genius. (It does run in the family.)
  2. Found a sundress for $15, jeans for $10, and dark-wash denim capris for $20.
  3. Helped T. carry and screw up drywall in my laundry room. (Of all things I've screwed up in my life, of this one I am most proud.)
  4. Finished reading The explosive child, Getting your kid on a gluten-free, casein-free diet, and Brennan Manning's The furious longing of God, and start reading Toni Morrison's Beloved and another Jodi Picoult novel, Vanishing Acts.
  5. Put my feet up on the dash.
  6. Had Mongolian stir fry with another couple and didn't look at my watch once to see when we needed to be home.
  7. Spent 10 hours transcribing interviews from last month that I haven't even had time to listen to.
  8. Went to the beach with T. twice and listened to the waves and the birds and felt the sun on my face. (And didn't have to worry about anybody drowning or being abducted while I read my novel and ate too many chips.)
  9. Made up some gluten-free flour mixes.
  10. Enjoyed quiet, uninterrupted couple-time from supper till bed.
  11. Ate chocolate whenever, wherever, however I wanted. (Fondue was my favourite.)
I was hoping that a break would make me a more relaxed mother. But last night, thinking about returning to my hyper-vigilant 24/7 on-call post, the tension returned. I felt like my body was bound up with copper wire, digging into my skin. I need to do whatever I can to make sure that small breaks keep coming, so I don't snap.

To help maintain the "I'm a person too" feeling, here's my plan: I resolve, no matter how I feel, to lose the "I'm so overwhelmed I can't take it" edge in my voice which makes me and T. both feel like running away from home. To do my best to see my kids, not as repositories for earwax or boom boxes sans volume control, but as people too.

Saturday, July 10, 2010

On different playing fields

I ran into an old friend at the zoo.

We were barely in the zoo entrance, when G. began yelling at me. "That's not where the prairie dogs are! You're going the wrong way. We're never going to find them! Why can't you find things - you're a grown up! This is too weird."

I sigh and take a few more steps in the direction the prairie dogs are on the map in front of me and in my head. The place where they have always been. I keep my eyes on G. in case she tries to bolt toward the prairie dog haven in her head.

I walk slowly, waiting for my friend to get her baby in the stroller. How's motherhood? I ask. She smiles, and begins to list all the reasons her baby is the greatest miracle to ever roll the earth. The kid is cute.

Beside me: "We're at the wrong place! Last time it looked different!"

Oh, I get it. G. remembers last year when she chased the loose prairie dogs around the grass near the other entrance while we waited for T. to park the car. But she's not going to get it, if I try to explain.

"Just a second," I tell my friend. "G., don't worry, we'll find some prairie dogs. They live in more than one place at the zoo."

As G. continues her rant, I ask my friend, "So what's new?" One eye on G., the other on my friend.

This worked out great, I think. I don't have to walk through this place alone. I have another adult to chitchat with, to take my mind off the racket at my hip.

"Well, it was nice to see you. I'll catch you again sometime when you're not in the middle of a crisis," and my friend walks away, her baby cooing softly.

I almost called after her: "Okay - I'll see you at Donwood Manor then! We'll have tea!"

When I'm not in a crisis? You mean other moms can predict which moments will be crisis-free? (And this isn't a bad crisis: I haven't even had to call security yet!)

I'm reading The Explosive Child by Ross W. Greene, a "new approach for understanding and parenting easily frustrated, chronically inflexible children." Greene says the way we've been taught to parent - being firm and consistent in enforcing rewards and consequences - works to motivate kids who can comply, but doesn't help children who lack the skills to do what we're asking. (Makes sense: a fat raise might make me a more consistent blogger, but would never make me into a good accountant!) In fact, being inflexible as a parent doesn't teach the inflexible child what they need to learn most, which is, flexibility!

Some of the skill deficits Greene lists that cause kids to go "kaboom" include: difficulty expressing needs in words, difficulty managing emotional responses to frustration in order to think rationally (imagine perpetual pms), difficulty deviating from routine (different zoo entrances are a bigger issue to some of us than others), and difficulty imagining the consequences of their actions or their effects on others (G. has no idea she's embarrassing me in front of dozens of zoo patrons and peacocks).

The part of Greene's book that keeps coming back to me is one of his conversations with a mother whose son exploded/bolted regularly at the grocery store. Greene convinces her that she needs to listen to her son to learn why he finds the store so challenging, do some collaborative problem solving, and avoid taking him to the store for a while until he's developed some more skills.

Mother: But he can't avoid supermarkets forever, right?
Answer: Right. Luckily, going to the supermarket isn't critical to Eduardo's existence right now.
Mother: What about my existence? It's not always possible for his grandmother to watch him for me while I'm at the supermarket.
Answer: Yes, I understand. But it's even harder - and a lot more detrimental to your existence and your relationship with your son - to have him exploding every time you take him to the supermarket.
Mother: I don't know anyone else who can't bring her kid to the supermarket. This is ridiculous!
Answer: You're on a different playing field from people who don't have any trouble with their kids at the supermarket.

On a different playing field. Sometimes it feels like a lonely one.

I asked another mom if she'd do a few respite days for me over the summer, and she responded, "No, I want to be able to go on spontaneous day trips with my kids." Me too! That's why I need respite!

For example, to go to the water park, I have to find a sitter to stay home with K., because that's one place he can't manage. To go to the beach, I have to need a friend or sitter to go with me, because while other kids can do "zone," mine require "man-on-man" defense - particularly when crowds, water, and moving vehicles are in the mix. When we go to the store, I have to be prepared to leave my cart and walk out the door with nothing. All my plans are tentative, because I never know whether my kids will manage at school, camp, the sitter's, or whether I'll get a call to pick them up now.

I don't compare myself to other families like I used to. I know there are places they can take their kids I can't, and other places they can relax while the kids play and I have to stay hyper-vigilant to make sure no one gets overwhelmed, explosive, inappropriate, or lost.

I don't beat my head against the wall (except in my weaker, pms-type moments) because I can't do things other parents can. But I do wish it was easier for them to come alongside me.

We could walk the wrong way to the prairie dogs together.

Saturday, June 12, 2010

You are an edible root, and other lies nobody tells you

K.'s been having a hard time lately. Bullying didn't help.

Attending a small school, he's had been with the same core group of classmates since kindergarten. Not only do they accept him, but they think he's smarter (and, of course, cooler) than the teacher. I often get stopped in the hall by a kid from the grade 4/5 class, eager to tell me about K.'s latest invention, diagram, or scientific explanation. "Your son is a genius, Mrs. Schellenberg." When K. was staying for lunch, he couldn't manage the noise of the lunchroom, so he has his own "restaurant" (complete with personalized napkins, reservation list, and hand-written menus) at a table in the hall, and kids fought over the chance to eat with him.

But there are always kids in other grades, not privy to his ingenuity or hospitality, who only see quirks. A few weeks ago, as he was walking through his own yard pretending to be Hydro (his made-up superhero with powers over water and electricity)/Herman Hendricks (Hydro's mild-mannered alter ego) in a cape and trench coat, a kid called over the fence.


K. slunk into himself and into the house. That wasn't the only moment of ridicule that week, and it wasn't the only catalyst for his frustrating, anxious, overwhelming spring. But it didn't help.

I'm a big fan of Dawn Heubner's cognitive behaviour therapy (CBT) workbooks for kids. G. and I have done a lot of work in What to do when you worry too much (featured in my next Christian Week column), and right now, K. and I are going through What to do when your temper flares. This week we were reading about realistic thinking, the great secret that most adults don't know: "The only thing that makes you angry is you." We talked about how we can't control what happens to us or what other people say and do, but we can control how we think about it. Think someone's being mean on purpose = mad. Think it was an accident = no big deal.

Then, I took a risk: "K., how would you feel if a kid walked up to you and said, 'You're an idiot.'?" His eyes widened, then squeezed tight, trying to hold in the tears. His head flopped onto the table. I was afraid I'd lost his focus, the conversation would end as cruel and unnecessary punishment, the lesson would be lost, and Huebner's book would be greeted with resistance for the rest of time.

"K.?" I had his eyes, but would he hear me? "I can see that would really hurt your feelings, but what would happen if I said, 'You are a rutabaga'?"

He stopped whimpering. "What's a rutabaga?"

"Some kind of vegetable that grows underground." I typed it into Google and pulled up a photo of some purple lumps. "Here, see? You are a rutabaga!"

He started to laugh. Not a little tee-hee but a hu-huu, throwing his head and bouncing on his seat. Once the ringing died down, I said, "You are not a rutabaga. You are also not an idiot, weirdo, or nutcase. If you believe that, you will find those names just as ridiculous as rutabagas. That's why it's so important to read the Bible and believe what God says about who we are. Not just to make God happy, but because God knows that what we believe will change how we feel and what we do."

"Oh, and K., you look really dumb...with all those eyeballs growing out of your hair!" We rolled with laughter together.

I gave him permission to tell name-callers, "No, I'm not stupid, and I'm no rutabaga." If it helps him stand tall and smile confidently before his mockers, rather than running out of the room in tears, I expect it will make him less of a target, not more. And laughter means the stinger can't stick. I warned him they would think, "That was weird!"

But we'd know the truth.

Wednesday, May 26, 2010

Take these broken wings

I endured the most difficult conversation in the car last night on the way to pick up my husband from work. It was a tearful euthanasia/palliative care (gone wrong) debate, right in front of the dying patient.

G. had found a one-winged butterfly, which she was aggressively nursing back to health. (It wasn't working.) She'd it shake and poke it to try to make it move. Every time it wiggled, she'd report her clinic's success rate. Poor K. was beside himself.

K: "You're hurting it!"
G: "It moved its leg. Yeah, it's still alive!"
K: "It doesn't want to live anymore! Leave it alone."
G: "Oh no, it stopped."
K: "Finally, it's not suffering anymore."
G: "Wait, it waved again."
K: (in tears) "Ahhhh!"

We finally arrived at the office, where I insisted we leave butterfly among the flowers. G. said, "We can take care of other creatures. Right, mom?" All I can say is, with her kind of care, I hope insects don't have a lot of pain receptors.

Eugene Peterson writes, "Suffering is a character of the personal. Animals can be hurt, but they do not suffer. The earth can be ravaged, yet it cannot suffer. Man and woman, alone in the creation, suffer. For suffering is pain plus: physical or emotional pain plus the awareness that our own worth as people is threatened, that our own value as creatures made in the dignity of God is called into question, that our own destiny as eternal souls is jeopardized."

Remembering Scripture can be comforting in times of suffering. Verses like 2 Corinthians 1:3-5: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows."

Or Philippians 1:6: "He who began a good work in you will carry it on to completion until the day of Christ Jesus."

Lately the verse that's been in my mind is: "Help, God--the bottom has fallen out of my life!" (Psalm 130:1 The Message).

Not exactly one of comfort or completion. It is nice to know that someone else (although a few thousand years too early to cry with me over lattes) has felt the same way, but I'm guessing the writer's problem had more to do with being chased by lions or watching his children being carried off by marauders, than the setbacks of parenting a child on the autism spectrum.

For that I need to look around the table at my mom's support group. They know the fear, vigilance, discouragement, inconvenience, childcare issues, safety concerns, the stares, the home-school-doctor conflicts, the medical decisions (do I look like a doctor?), the frightening side-effects, the uncertainty about whether this summer's plans or independence (college? empty nest? grandchildren?) dreams will pan out.

What I like about Psalm 130:1 is that it's directed at God; God-given words to pray when I'm too tired to think up my own (but that fit my hurt like a glove). Eugene Peterson says this Psalm is "a powerful demonstration that our place in the depths is not out of bounds from God. We see that whatever or whoever got us in trouble cannot separate us from God."

No relief for wingless, Über-handled butterflies, but for the K.'s and the moms (and the G.'s in their own way) who weep over lost beauty, who feel the pain plus, who see the bottom fall out, it's something to hold onto. Even if it's only with one wiggling leg.

Tuesday, May 04, 2010

What flavour of jelly will you be?

How much of a child's personality is shaped by their disability? Who would they be if the autism suddenly disappeared?

Here's another quote from Jodi Picoult's Aspie character, Jacob, from House Rules. (Are you getting the feeling that I loved the book?)

"Once Theo asked me if there was an antidote for Asperger's, would I take it?

I told him no.

I am not sure how much of me is wrapped up in the part that's Asperger's. What if I lost some of my intelligence, for example, or my sarcasm? What if I could be afraid of ghosts on Halloween instead of the color of the pumpkins? The problem is that I do not remember who I was without Asperger's, so who knows what would remain? I liken it to a peanut butter and jelly sandwich that you peel apart. You can't really get rid of the peanut butter without taking some of the jelly as well, can you?"

I disagree. I love my kids and my brothers for who they are, but if there was a way to make life -- touching, experimenting, relating, dressing, eating, working, learning, expressing -- easier for them, I would.

I know the churchy stuff about hard things building strong character, but when the disability is a lack of coping skills like endurance, adaptability, and impulse control, rather than growing them outward and upward, the pain of butting up against the world often makes children on the spectrum retreat further into themselves. If you misread the world, chances are you won't get the lesson of pain either.

And I don't share Jacob's fear that my kids wouldn't be themselves without the disability. While it's true that kids on the higher end of the autism spectrum are often articulate, curious, intelligent, endearing, unique, and precocious, it wasn't the autism that made them that way; it was God. All of us are who we are, and we love each other for it. But none of us is exactly who we were meant to be. We are broken, imperfect, beautiful walking images of the living God.

I don't for a minute dream of giving birth to anyone other than who I have. I don't waste time wishing my kids were different. I'm not waiting for an antidote. But I do look forward to the day when love, joy, peace, patience, kindness, goodness, and self-control will rule in every heart and each of us will be more like our true selves, the perfect unique person God intended all along.

He knows what's peanut butter in us and what's pure jelly. He could separate them without losing any sweetness. But I have the feeling our destiny will look more like this: he'll transform our rancid peanut butter into Nutella.


My spidy sense is tingling--ouch!

"When I was little, I convinced my brother that I had superpowers. Why else would I be able to hear what our mother was doing upstairs when we were downstairs? Why not say that the reason fluorescent bulbs made me dizzy was that I was so sensitive to light?...

Having Asperger's is like having the volume of life at full blast all the time. It's like a permanent hangover....All those little autistic kids you see smacking their heads against walls? They're not doing it because they're mental. They're doing it because the rest of the world is so loud is actually hurts, and they're trying to make it all go away....

Nobody ever asks Superman if X-ray vision is a drag; if it gets old looking into brick buildings and seeing guys beat their wives or lonely women getting wasted or losers surfing porn sites. Nobody ever asks Spider-Man if he gets vertigo. If their superpowers are anything like mine, it's no wonder they're always putting themselves in harm's way. They're probably hoping for a quick death" (words of the character Jacob in Jodi Picoult's House Rules).

The sensory "stuff" of autism spectrum disorders has to be one of the hardest part to handle. And the hardest to understand.

He looks like he can't hear you, when in fact he might be hearing you, the ceiling fan, the fridge, the dog on the sidewalk, and the downstairs TV all at once. He's focusing on the fan and blocking out the rest so he doesn't go nuts. I used to think K. was running away and laughing out of defiance, when he was really doing everything in his power to cope with sensory overload.

What parent of a kid on the spectrum (especially pre-diagnosis) hasn't lost their patience with a kid who makes the whole family a half-hour late by crying over a hair in her face or the pants that "just don't feel right?" How many parents haven't thought "missing person report" when he bolted in the crowded arena because it was too noisy, the lights were too bright, or somebody touched him? How many get tired of making separate meals or dealing with the tears when the kitchen smells like anything non-macaroni (or when the clothespin on her nose starts to hurt)? If it's hard for you as a parent to watch/respond to/turn your life upside down for, you know it's that much harder for them to live it.

Think of any time in life when you might hear, see, smell, taste, or feel something, and those are the times autism can hurt. No one promised adapting to life off Krypton would be easy.

Sunday, May 02, 2010

this life a reality, not a status symbol

When I post my day's schedule (such as: morning at daughter's clinic appointment, off to school lunch program shift, afternoon accompanying son on field trip, or: interview in the morning, interrupted by call from school, followed by coffee date with friend, digging in the garden, and watching the neighbour's kids after school) on Facebook, I feel misunderstood. I get two different reactions: either people accuse me of complaining about how busy my life is, or they think I'm bragging about everything I can accomplish in day. I'm doing neither.

I got anxious about dealing with confrontation, asking for help, talking to strangers, going to new places, making decisions, meeting others' demands, and trying things (eg. baking and gardening) that my mom is über-good at in case I stink at them. As with anyone's life, (other than the part about following my mother's footsteps) often I don't have a choice. I need canned tomatoes, and I can't find them in the store, so I have to ask for help from a stranger, who may or may not be rude, and whom I may or may not decide to confront for it. I don't like rushing to appointments or interviews on the same day one of the kids needs to be shadowed on a field trip, or calmed in the principal's office after a meltdown, or rushed to the E.R. for a fluky injury, but I don't always find out about the field trip ahead of time, and well, no one gets advance memos about the others. I don't like being busy, wouldn't choose to busy, am not proud of being busy, but my kids don't ask me whether I have work deadlines before they have a crisis. This is just the way earning a living and maintaining a home, while caring for children with challenges, goes. I'm not complaining, I'm just sayin'. That's life.

So when I tell Facebook the demands on my day, I'm not looking for pity or admiration. I'm celebrating. Because, for someone who has to take a deep breath before saying "excuse me" to the shelf stocker, I done pretty good.

Saturday, May 01, 2010

Take cover

My daughter, G., gets upset whenever she doesn't understand something. It never occurs to her that it does make sense and that she'll understand it someday. She just gets mad at the rest of us for being "so weird"; she's the standard edition. My son knows it's not the world that appears weird; his life is harder.

"Dealing with an autistic meltdown is like dealing with a tornado. Once you are close enough to see it coming, there's nothing to do but weather the storm. Unlike a child having a temper tantrum, Jacob doesn't care if his behavior is making me react. He doesn't make sure he's not hurting himself. He isn't doing it in order to get something. In fact, he's not in control of himself at all. And unlike when he was four or five, I am not big enough to control him anymore" (The words of "Emma" in Jodi Picoult's House Rules).

I've had psychologists tell me that if I keep a log of everything that happens (I think she actually said "everything you do") right before K. melts down, that I will be able to determine, and hence prevent, all of his triggers. Ha. I'd have to live beside his ear because a trigger could be a peer's taunting whisper. I'd have to be able to read his mind, because a trigger could be a thought--a misinterpretation of what's happening around him. Like when the teacher used reverse psychology: "Class, let's make a list all the things we could do to make this course as miserable as possible" and K. thought she actually meant to implement it!

I told my mom about K.'s rough week at school. He thrashes and throws, and when it's over, he doesn't remember what happened, and when you ask what upset him and why, he doesn't have a clue. "It's like a seizure." My mom said that's exactly what she thought about my brother when he was little. One minute he's kicking dust and punching walls, the next he's quietly pushing a truck back and forth or asking for a drink.

It used to freak me out, like don't you care about what you just put my through? Now that K.'s older and more socially aware, I know he does; I can see the remorse, the despair on his face when he realizes what he broke or who he's frightened.

The psychiatrist in House Rules explains, "Kids with Asperger's are very bright and verbal and crave social acceptance...they just don't know how to get it." That's what makes it harder: you want to fit in, but you know you can't, the pain of rejection makes you lose it, which makes you fit in less, which hurts all the more. And round and round we go. It's the anxiety and frustration of living with an autism disorder, more than the disorder itself, that causes the most pain. If the rest of us were autistic, or hey, even if we understood what that feels like, autism would be just a difference, rather than a disadvantage.

I don't know exactly what my kids need. I can make separate dishes without sauces or spices. I can buy them three pairs of the same pants because they are the only ones that "feel good." But I can't make the world seem less "weird." I can't predict every trigger or stop every tornado.

I can make home a safe shelter for tornado victims. That includes all of us.

pdd-not otherwise significant?

I talked to two medical professionals this week: a Health Links nurse and a walk-in doctor. Neither one had heard of pdd-nos or pervasive developmental disorder-not otherwise specified. I could understand if they didn't know what ttyl, rotfl, or byob stand for, but isn't it their job to be up on common medical terms?

I had thought of getting medic-alert bracelets--great if kids are hurt, so the first responders know about their medications and understand their unusual behaviours, in case you aren't there to explain it. But if the paramedics reading the bracelet have never heard of pdd-nos either, what good would it do?

Pdd-nos is a catch-all term for verbal individuals who struggle with social reciprocity (making eye contact, reading facial expressions, initiating conversation, or playing interactively), and who may demonstrate rigidity (inflexible routines or rituals), and have sensory issues (sensitivities to loud noise, flashing lights, tags in clothing, texture of foods, etc.). In other words, people with pdd-nos have symptoms of an autism spectrum disorder, but don't perfectly fit all the criteria of any particular ASD diagnosis, such as Asperger's or Autism. Hence the -nos--"not otherwise specified."

Kids with pdd-nos fall all over the spectrum, in terms of IQ and social skills. They may be more, or less, severe than Aspies; Asperger's just requires the presence of additional symptoms, such as an obsessive interest in an unusual topic (like weather patterns--think "Cloudy with a Chance of Meatballs"). We're sure K. has Asperger's (our obsessive interests have spanned photosynthesis, pipe organs, dirigibles, and Star Wars), but at the time he was diagnosed (age 6) the psychiatrist told us that he didn't give the Asperger's diagnosis until kids were older. So in the meantime, the official word is pdd-nos, which, it turns out, is a meaningless one!

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.

Tuesday, March 30, 2010

If you're reading this...

I watched the movie Julie and Julia this week. Julie was discovered as a writer through her blog; a journalist at the New York Times read it, ran a story about her, and immediately she had dozens of calls from book publishers. Cool.

No one will ever discover me through this blog because it's not search-able online. New Ange is in the middle: slightly less personal than a private diary, but too personal for me to make available to everyone. Whenever I think of making my blog accessible to Google, I think: Do I want the guy I dated in high school to read this? Do I want distant relatives who still call me 'Angie' to gossip about my hangup and crises? Do I want personal information about my kids floating around cyberspace for their future employers (and therapists) to see? And I answer, no.

What I write here is for friends and friends-of-friends; to encourage you in your own daily "blah," "ak!" or "ahhh!"

Sometimes I think of starting another blog, one I'd be comfortable letting the whole world read. Blogging more would help the creativity to flow more freely. (Right now I'm at a slow drip.) But would I write any different? Maybe I'm just afraid; after all, if I wrote a book, fiction or biography, its cardboard covers would hold personal information about me for everybody's ex-boyfriends to read. The difference is that it wouldn't be just me talking; a publisher's stamp of approval would be on my words--so the distant cousins wouldn't be able to gossip about my hangups without first mentioning my success: "Did you hear Angie wrote a book?"

I want to lose myself in a book--my book--more than anything; I won't be truly alive until I feel the creativity pour out of me. Is blogging for the whole world the best way to get there? What would my public blog/book be about?

Friday, January 01, 2010

Highlights of 2009

What I celebrated:
Our 15th wedding anniversary (with a weekend in Kenora),

my inlaws' 50th,

and my children's successes.
What I lost:
I said goodbye to my wonderful Grandma--my last grandparent, my connection to the past, my greatest prayer warrior, one of my best friends, and my biggest fan.

What I gained:
Something to keep my car...
...and my arms warm.

What I accomplished:
I submitted (and published!) a freelance story for the first time in years.
I taught two new courses: Minor Prophets and Communications, opened many pudding cups for first and second graders, sold a few spices, taught my daughter to ride two-wheeler and sent my son to his first week of overnight camp, wrote my Christian Week health column, and accepted a part-time term position as a Mennonite historical researcher.

I painted G's room yellow...

...and Minneapolis red!

Perhaps my greatest memories involve girlfriends new and old:
I joined a monthly support group for mom of special needs kids (which meets at Kelsey's over
free drinks and pricey appetizers), hosted an alfresco tea party, c0-led a women's accountability group, and went for many life-giving coffee dates with special friends.

Happy New Year!