Day 1: Footnotes

And I’d been so optimistic.

The successful feeling of Day 1 casein-free was followed the next morning by daycare asking, “Just milk, cheese, and yogurt, right?  If something is baked with milk, that’s OK, right?”

It turns our first official day of CF hadn’t been so “F” after all.

No, I explained, all milk needs to be removed.  Oh, they said.  Well, in that case, we’ll need to go over our menu more closely.  The day after, I was handed a menu with pink highlighting on just about every meal that month.

OK.  It’s just more work than I thought.  But I can do it—I’d expected some of this.

Menu item: Muffins.

Plan: Bake substitute muffins night before.

Major glitch: Yesterday afternoon, I was told by the college where I teach that I would have to teach night classes next semester.  Now, I’ve told them I can’t do this.  I have young children, I’ve said.  A baby who insists that her mommy—not her daddy—to put her to sleep, and a 3-year-old who is very reliant on routine.  The last time they put me on a night class, we’d been seeing improvements in Logan’s behavior, but when I suddenly wasn’t at home in the evenings anymore, his aggression at daycare got worse.  It could be a coincidence, but I suspect the two are linked.  So I told my boss, please, I cannot do night classes.

Apparently something changed.

So because I do not want to see Logan regress again, I spent last night instead of baking muffins searching for new jobs.  And even if I hadn’t had to job search, it seems something random usually does come up that takes up my evenings, anyway.

How do people find the time to bake all these GFCF foods?  I’ve gone over my schedule with a fine tooth comb trying to find places to save time.  What can I possible cut out?  I wake up every morning at 5 a.m. to “workout,” by which I mean walking my dog.  I could cut this out, but when I do, I feel guilty that the only attention and exercise my dog is getting is gone; plus, since I no longer have time to run and lift weights, walking is my only exercise and if I don’t get a walk, I start to feel heavy and ugly and bad about myself.  Which makes me irritable and therefore a worse parent and partner.  So the walk cannot be cut.

Then I have a slim 45 minutes to shower (which sometimes I do cut in favor of longer sleep before my walk), dress, wake my kids, dress my kids (which is incredibly slow with Lgoan), feed my kids, and assemble everything they need for the day (Sadie’s blanket, show-and-tell items, paperwork … and now CF foods).  I also try to unload the dishwasher now, to ease the even-more-hectic afternoon.  None of that can be cut.  The next 10 hours and 15 minutes are taking kids to daycare, commuting to work, working/pretending to work while writing, and commuting home from work.  From 6:15 to 7:15 I try to play with the kids, pet the dog and get her to stop begging for another walk, set the table when my husband shouts at me from the kitchen where he’s cooking supper, review Logan’s sheet to see how his day went, try to engage Logan in conversation about his day, firmly tell the kids that no, they can’t have a sugary snack right before dinner, corral them out of the kitchen and try to lock the pantry, pick up Sadie after her never-ending “up!” demands, corral the kids back to the kitchen to the dinner table, coax them to eat their vegetables, remind Logan to stop banging his spoon, remind Logan to stop spinning his plate, remind Logan to keep his hands to himself at the table, jump up to get the forgotten milk in the refrigerator, tell a crying Sadie that no, she can’t sit on my lap while we eat, jump up to get a forgotten fork in the drawer, and remind Logan yet again to stopping banging his spoon.  Oh, and try to eat.

I hate dinnertime.

But it obviously can’t be cut from the schedule.

Next, I have to get Sadie in the bathtub, get her into her pajamas, read her books, and rock her to sleep.  Then repeat with Logan.  Again, nothing that can be cut to save time.

Luckily, both kids do go to sleep pretty easily, so from 8:45 on, I’m free.  Yet now I have to clean the kitchen (which I do at a bare minimum, by the way), usually do some homework for the MBA program I’m almost finished with, or fill out the endless paperwork that comes with kids and particularly kids with IEPs.  I could stay up until midnight or later baking Logan’s CF substitutes, but honestly, if I’m not in bed by 10, I can’t get up at 5 in the morning.  Which leads back to feeling gross.

So seriously, when do people do all this GFCF cooking?

On weekends?  I guess, but on weekends I try to devote more attention to the kids since we get so little time together during the week, on top of more homework and more thorough cleaning (and even after my “thorough” cleaning, the house still looks worse than my mother’s house’s messiest day).  And laundry.  And church.  And any birthday, housewarming, baby shower, or other parties that are scheduled.

I’ve already given up working on the book I’ve been writing for the past three years, my lifelong goal to be a published author.  I’ve given up on book club, and any form of exercise more than walking.  What more can I give up?  How can I find the time to be the parent my children deserve?

GFCF?

F this.

Feeling: Lost and numb

Day 1: Beginning CF

Well, yesterday was Logan’s first full, official casein-free day.  I gave him his coconut milk and some strawberries before taking him to daycare, and I brought wiThe Kid-Friendly ADHD & Autism Cookbookth us a cooler filled with dairy-free foods for the daycare’s cook to substitute.  He was excited to have a “special cup” of yogurt at snack time.  And at dinner, Logan did not add Alfredo sauce to, which is normal for him, anyway; he likes his food plain.  He did a good job of eating unbuttered green beans, too.

Coincidentally, the two cookbooks that I ordered online also arrived yesterday:  The Autism Cookbook and The Kid-Friendly ADHD & Autism Cookbook.  Even already in my third post I feel like a broken record, but I hate cooking with a passion—but I’m actually excited to read these two cookbooks.  I told my husband my goal would be to learn how to make one recipe each Sunday.  He laughed at me, probably because I think I’ve said the “I’m going to try to learn to cook, I swear,” line before.  But this time I’m on a mission, and hopefully the CF plan will help me stick to my goal.The Autism Cookbook

Of course, it just so happened that his first CF day also coincided with the first time Logan’s accumulated five stars on his behavior chart (meaning he’s gone five days without pushing, hitting, or kicking anyone at daycare!).  This is great—but it also means he was promised a trip to McDonald’s.  Here’s hoping we’ll find something there that’s not too horrible for him.

And here’s to a successful first day!

Feeling: Capable

Prologue: Prepping for GFCF

So wThe Autism and ADHD Diete thought about it. And thought about it. Then thought some more. When I finally found and showed my husband a printout of treatment success rates from the Autism Research Institute, we decided to give the biomedical approach a shot. Almost 70% of parents surveyed by the ARI reported their child’s autism symptoms “got better” with a GFCF diet (a ratio of 24:1 better to worse). Removing just wheat had a 30:1 better to worse ratio, and removing just dairy had a 32:1 ratio.

Because of its higher success ratio, and because it seemed easier than GFCF or even just GF, we decided to go simply casein-free. That meant eliminating all milk and milk products from our son’s—and largely our—diet.

Last week, then was sort of a prologue to going completely CF. Last Monday I bought a half-gallon of coconut milk from the normal grocery store (I have a fear of grocery stores to begin with, and the natural food store was too intimidating to me at this point). I read The Autism and ADHD Diet by Barrie Silberberg, as well as any information I could find online. I spent hours on the Autism Speaks website, the Autism Research Institute’s website, the Talking About Curing Autism website, as well as others unrelated to autism, such as Living Without Magazine. I bought GFCF cookbooks. I messaged an autism support group on Facebook and asked if anyone had tried GFCF or just CF, and received many positive answers—though also one neutral. I messaged a few friends I knew who lived GF and/or CF for various reasons for advice.

Feeling: Informed

All this time, Logan had stopped drinking dairy milk and was now getting only coconut milk at home, though he still received dairy all day at daycare. The good news was he loved his new “special” milk. I also bought a small box of almond milk, and he loved that, too. He has not asked for regular milk once, even when he sees me pour it for his sister.

Next, I informed his daycare about our plan to go casein-free. To my surprise, they told me there is a law that requires them to serve Logan milk and they needed a signed form from Logan’s pediatrician to offer him anything else.

So I called his doctor. She immediately sounded wary. But I persisted, as I walked heatedly down Washington Avenue from work to my car with traffic flying by me and just as heatedly told her that we are going to try this. It’s worth a shot. She reluctantly agreed to sign the form as long as it was understood it was only for a trial basis.

The next day, form in hand from daycare, I attempted to fax it to the doctor’s office. Of course, I couldn’t get it to go through. After work, I called upon all the courage I could and drove to the natural food store. Of course, I couldn’t even find it.

Feeling: Defeated

But I kept driving, and I actually soon found it. I tried my best to ignore the crowded aisles and overload of choices, which always defeat me at the normal grocery store. I tried to be OK with looking lost and helpless, and I actually asked an employee for help. I’d brought a list of meals Logan’s daycare would give him that week, so I knew I needed substitutes for yogurt, cheese, and French toast. I actually found all everything on my list.

This is major for someone who freezes when asked by her husband to go “grab a thing of pickles” when grocery shopping together. Have you seen the pickle aisle? Do I need dill or bread n’ butter? Slices, spears, whole, minis? Organic? Kosher? Generic? That brand, this brand, the one on sale? Why are there so many f**ing different jars here? I just want a thing of pickles!

I left the natural food store feeling proud though also felt a bit penniless. Everything seemed so expensive (not that I really knew, since my husband does most of the shopping). As I drove to daycare to pick up Logan and Sadie, I breathed a bit easier. I turned on the radio and rolled down the windows (then I rolled them up because it was 95 degrees out.) But I was happy: I had a plan for my son, and now I had the tools.

Feeling: Positive. Or, as Logan is learning to say, “in the green zone.”

Foreward: Learning about GFCF

About eight months ago, in December 2012, my 3-year-old son qualified for special education services related to autism spectrum disorder through the school district.  Though he had (and still has) no official, medical diagnosis, his behavior and development match characteristics of ASD.  He was very late to talk–in fact, even babbled very little as a baby–and though he talks now, even in full sentences, most of his communication is echolalia, meaning he repeats things he’s heard others say, things he’s heard in a movie, lines we’ve read in books.  He has little eye contact, rarely engages with peers in play, and is very averse to change.  After we heard the word “autism” from the school district, I immediately called several autism specialists in our area to schedule an appointment to have him officially evaluated and diagnosed.  Each place put us on a wait list.  We are still waiting.

In the meantime, I’ve been learning as much as I can about autism and treatments.  Of course, as anyone beginning to look into autism knows, the gluten-free, casein-free diet popped up again and again in my reading.  I’d heard about it a couple years ago and admittedly scoffed openly.  Live without milk?  Impossible.  I love milk.  I love cheese.  I practically live on these.  GFCF sounded like a crazy, new-age trend.  But the more I read about it and its connection with autism, the more it sounded reasonable.

Maybe it does work–and isn’t it my job as a mother to try anything I can to help my son?  As long as we approached it correctly and made sure Logan still received all the nutrients he would otherwise, what could it hurt to try, at least?

Well, for one, it would be more expensive.  And it would be more stressful.  After all, I hate cooking–in fact, even going grocery shopping gives me anxiety.  Too many choices, too many prices, too many people…ever since I can remember, shopping for and preparing food has been a nightmare for me.  There was at least one year in my life where I ate little more than fettuccine Alfredo TV dinner because the microwave was the only kitchen appliance I could handle.  I called myself vegetarian for several years not only because I am concerned about animal welfare but also because the thought of touching and cooking meat scares the hell out of me.  I told myself I’d learn to cook when I had children.  But I didn’t–thankfully (or perhaps because) my husband is a terrific cook.

So how could I, a girl who panics at the thought of boiling water, learn to cook anything GFCF?

So we let the thought of a GFCF diet percolate for several months.

Feeling: Extremely anxious and frustrated

Reading Moby Dick with my 1-year-old

Call me crazy.

But first, know that we’re reading the Cozy Classics version, which is a 12-page board book with pictures.  My husband still thinks it’s silly.  But I can’t remember the last time I’ve been so excited about a book.

MobyDick

I found the Cozy Classics website and of course immediately wanted to buy all of the titles they sell.  But because the illustrations are all handmade from felt and thread, which I assume takes a long time to do, there are only 12 titles available and each is actually kind of expensive.  So instead I bought just three, two I plan to give as baby shower gifts (only to my avid reader friends) and Moby Dick to keep for my daughter.

Sure, Sadie’s not going to actually grasp Melville’s themes of mankind’s place in the universe, the futility of revenge, or fate, nor will she appreciate his metaphors and symbolism.  But, still, there are lots of reasons why giving her a classic is a great idea.  For one, many children’s books feature animals—see the article at http://www.aeonmagazine.com/nature-and-cosmos/what-do-our-children-learn-from-the-very-hungry-caterpillar/ for proof of animals overtaking kid lit—and while the story of the white whale might not be a typical animal hero story, it will still no doubt catch her eye.  For another thing, it helps with identifying emotions, which is important as more in more children (1 in 88, in fact) are diagnosed with autism.

Mad

The small book has a narrative arc – exposition (“Boat” says one page) – rising action (“Captain;” “Leg;” “Mad”) – climax (“Smash!”) – falling action (“Sink”) – and resolution (“Float”).  Of course, that means it also should come with a spoiler alert warning for parents who haven’t read Moby Dick and don’t know it ends with the Pequod sinking.  This book has characters, it has tension, it has description through the lovely pictures—in fact, it has everything I tell my creative writing students they need to work into their own writing.

Sink

And, maybe one day, Sadie will pick up the “real” copy of Moby Dick I’ve placed on her bookshelf along with this Cozy Classic and have a vague, happy memory associated with it.  A memory of sitting on Mom’s lap in the rocking chair, cuddling with her blankie and her thumb in her mouth, learning about words and feelings and stories.  Maybe she’ll remember how wonderful learning was at that age, how all she wanted to do then was learn.  Maybe she’ll realize learning should be wonderful at all ages, and maybe—maybe—she’ll decide to read Moby Dick again.  And if she does, I’m sure she’ll learn even more.

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