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.