My Definition of Hero

A quick thought tonight as Logan falls asleep next to me in the big bed … to send love and support to all parents of children diagnosed with autism. This morning I met a friend for coffee, and it’s clear her stepson’s recent diagnosis is taking a toll on her.

Normally a cheery, optimistic person who tended to respond with, “Oh, we have challenges, but he’s fine …,” today her whole body seemed different. Her replies were more terse as she told me about the issues at at school — her stepson is 12 — that have her about at the end of her rope. Compounding the problems seem to be the boy’s father, who doesn’t–or won’t relate–to his (biological) son. So it’s fallen on her to figure out how to help Josh* understand that shut-off switch many of our kids don’t have; while the other kids he follows understand when too much goofing around is too much, Josh cannot gauge this and continues to push, push, push. Daily it’s been landing him in the principal’s office and once even resulted in pending legal charges for destroying property.

“And the thing that’s hard is that the school only has one special ed room,” she sighed. “So when he acts out, he’s put in that room with the nonverbal kids. It doesn’t do a thing for him — it just makes him angrier.”

Coincidentally, a few hours later I ran into a former student. She’d actually dropped out of my class, but I still feel a soft spot for her because I know she has an autistic teenager at home. As if it’s not hard enough to be a working mom, this woman is a working mom to a special needs child (and his autism is fairly severe) while trying to get a college degree and improve her lot in life. But every time she thinks she’s making progress toward her goal, life intervenes. This term it happened to be that her son exposed himself at school and was actually taken to jail and surrounded by people who had no idea he had autism, and likely no idea what that meant, either. I hugged her, praying to God nothing like this ever happens to Logan.

I can’t imagine the turmoil these women face, especially as Logan has better and better days at daycare and school. My heart goes out to them, and to all the brave women fighting for their children. They define the word “hero” to me.

autism love

*Not his real name

Yup, Still The Worst Cook in Cybersapce

If ever I get too confident that I’m actually learning how to cook an feel comfortable in the kitchen, a day like today comes along to remind me I will likely always be an epic failure.

I bought a Spiral Slicer; a funky device that slices zucchinis into long, thin strands that look just like noodles. Since we’ve finally moved to Stage 4 of GAPS and can now have cold-pressed oils, I thought I’d make a recipe for pesto sauce that I found from the Home Health Happiness blog and something akin to pasta for the first time in God knows how long (because before the past 42 days on GAPS, we were following the Body Ecology diet, which also outlaws carbs). Zucchini Noodle Pesto – I was beside myself.

Zucchini noodles

Zucchini noodles

Normally, I’d never try a learn new, fancy dish like this during the week, and certainly never in the evening when we’re all just getting home. With Sadie tugging on my arm to play dolls with her, Logan incessantly asking me to play video games with him, the dog jumping up and down for me to walk her, and my husband eagerly chattering about something (today it was election results), it’s impossible for me to focus. I’d describe it like trying to learn Greek while walking on a tightrope over a shark tank.

But I’d taken today off work to catch up on writing (I decided to do NaNoWriMo this year and of course am already 6,000 words behind), clean, and grocery shop, so I had the sort of calm, capable feeling that comes after a day of accomplishments (I’d written almost 7,000 words, bought groceries and did the dishes!). I knew I could do this.

I picked up the spiral slicer and fumbled with it in my hands. “How does this thing work?” I asked Jason.

“Well, you use this piece to stab the end of the zucchini, and then you twist it through this piece.”

It felt foreign and awkward in my hand, even more so when I stabbed the zucchini and tried to twist it. Thin, dark green slices fell into my glass bowl.

“Oh,” I said, stopping. “Am I supposed to peel these first?”

I decided I should. That made the slices look like noodles, but I still couldn’t get them to slice into long strands. The tool just felt wrong, completely unlike a pen, which feels comforting in my hands — in fact, I even hold one while delivering a class lecture just to feel at ease. Maybe I should try holding one while I cook, too.

I sliced through most of my two pounds of zucchini, then decided I’d probably done enough. Jason was, thankfully, manning the food processor—another kitchen tool that never failed to baffle me- for the pesto sauce.

“Do we just drop all the basil in, or do we have to trim the ends first?”

“Is that all the garlic we have? I don’t think that’ll be enough.”

“The recipe calls for what? ‘A quart of oil olive, or as much as will fit’? What the hell is that?”

In the end, we did trim the basil stems, we had no choice but to only use six cloves of garlic (the recipe called for 2-10, which seems like an incredibly big range), and we only added maybe a cup of olive oil. All the ingredients swirled around with the high-pitched whine of the food processors, transforming into a bright green paste.

I dipped my finger in. It tasted lovely, like satin and velevet.

My zucchini noodles, on the other hand, were not faring so well. We didn’t really have a recipe for how to make them, but Jason guessed that, based on another recipe in Against All Grain, they’d need maybe five to eight minutes in boiling water. I did that, but when I drained them through the wire colander, they instantly turned to mush.

"Noodles"

“Noodles” Note how they were supposed to look in the picture behind.

I plopped the gob of zucchini into a glass bowl and sighed. It looked like pale green pudding – far, far from anything resembling noodles.

But—maybe because I’d spent all day writing, maybe because Logan’s had two rock star days in a row, maybe because Sadie was at the moment happily distracted—I was not deterred. I simply mixed in a few spoonfuls of pesto sauce and retrieved the now-cooked chicken from the stock Jason had been making. I spread the sauce over it and declared the meal a victory anyway.

The kids even ate it, though Logan had to be coaxed to do so. In fact, he had to be coaxed to eat everything, including his chicken, cabbage and carrots. Despite my satisfied attitude while cooking, I soon fell apart.

“Logan! EAT!” I cried as the night wore on and Logan babbled baby talk, pushed his fork through the air and pressed it to his face, then traced the faint circles around and around on his plate.. “Please take one bite!”

“No, Sadie, do not get up from this table again. If you do, you’re going in your bed. It’s not play time.”

“Logan, EAT.”

Logan stimmed all through the meal, taking bites only after three or four prompts from me. He screamed when I set the timer, telling him he had to clean his plate before it went off or he wouldn’t get a treat before bed. This tactic had worked a few months ago for awhile, but lately, it’s seemed to be more stressful on him than motivating. But on nights like these, it seems to be the only thing that works to get him to eat.

IMG_0079

Instead of eating, Logan is spending most of supper tracing the circles on his plate.

It worked tonight, too, but his distracted/defiant/restless mood continued. He simply could not sit still while I read books to the kids, and a stream of baby talk and extreme silliness seemed to just bubble out of him. He reminded me of a pot of boiling water with the cover rattling on top, barely able to contain the steam struggling to escape.

“Logan, if you can’t have a quiet body, we’ll be done with books and go to bed,” I warned him. I warned him several times, in fact—then finally, I had to follow through with it. “That’s it!” I cried. “You’re not having a quiet body. Get in your bed. Now!”

“I WILL have a quiet body!” he cried. “I WILL!”

“Logan, you’ve said that for the past six times. You will have a quiet body tomorrow. But right now, there have to be consequences!”

He screamed and cried and kicked, his body thrashing all over his mattress. I felt awful, but I felt like I was exploding, too. Why can’t he contain his energy? No matter if he’s angry or excited, he’s always like that boiling water pot, bursting with hot emotions.

“What is going on with him?” I asked Jason when the kids finally fell asleep an hour later.

“Did you see his ears?” he replied. “Fire red.”

Feeling: Irritated

Starting a Sea of Supplements

Drops of blood spurted out as I sliced my finger with the knife. Red drops dotted the bottom of the stainless steel sink and the bright orange carrot I’d been trying to cut in mid-air.

I sighed. How long is this going to take to clean up, I muttered. I tried wrapping my finger in a paper towel to stop the bleeding, but a puddle of red seeped through. I cursed; I was going to have to take the time to run upstairs, clean the cut and find a Band-Aid.

Logan’s favorite breakfast, pumpkin pancakes

It was already 5:35 a.m., and I still had to mix Logan’s pumpkin pancakes, cook them, and get the roast in the crock pot for supper that night. I still had to spoon his CocoYo yogurt into a thermos to bring as a snack. And, of course, I hadn’t packed a lunch for myself yet.

This was Monday morning. The rest of the week went much the same–without the finger slicing but with the addition of Logan and Sadie standing in the kitchen, wanting to play, from about 5:40 on. Both cases mean less time to put together lunch, breakfast, two snacks for Logan and a lunch for myself for the day.

But other than crazy mornings, we’ve been plugging along steadily with GAPS. We’ve gotten to add some delicious new foods, like fermented vegetables and pumpkin pancakes, which we told Logan are special Halloween pancakes. We’ve also started making our own coconut milk.

I barely stomach dry, boiled chicken anymore, but with boiled carrots and fermented red cabbage, it’s suddenly delicious.

The pancakes have lead to a little more wiggle room with breakfasts, though snacks are still pretty boring. We have two options: the CocoYo yogurt (that I’m not entirely sure is legal in this stage) and the Peppermint Gummies I wrote about last time.

Results are also back from Logan’s blood and urine analysis tests, and we met with his MAPS doctor to discuss any abnormalities. Little surprise, there are quite a few.

“His thiamine levels are low, and his B-vitamin levels are low, and he has a high need for glutathione.” The doctor dived right in. “His need for a few B-vitamins is a potential indication of some methylation needs.”

I’ve been reading about nutritional supplements, the methylation process and other biomedical treatments for autism for the past year — basically nonstop, in fact. I have piles of articles and studies I’ve printed out with highlights and summary notes, where I’ve translated the scientific jargon into my own words. I thought I understood it all fairly well. Yet, sitting in that insanely hot exam room, I felt like I was drowning in it all. Magnesium glycinate what? Orthomolecular intestinal huh?

11 supplements (some twice a day) ... is this too much of an overload?

11 supplements (some twice a day) … is this too much of an overload?

When it was all over, the doctor had given us recommendations to begin seven new supplements — on top of the four Logan already takes – and had ordered four additional tests. On my drive home, I couldn’t help but think about all the other articles I’d read, the ones on gullible parents spending a fortune on worthless “cures” for autism when of course everyone knows there isn’t one.

But isn’t there? I then think about Joanna, the woman I met from White Bear Lake, whose two sons are no longer on the spectrum due to dietary changes and supplements. And all the stories, like Quinn’s and Darren’s, from Talking About Curing Autism Now, that offer evidence some children do recover from autism from diet and therapy.

Even as I flip-flop between feeling gullible and progressive, Logan’s new pills now pile on our kitchen counter, and looking at them, I’m filled with either dread or hope, depending on my mood. We’ve separated them into a pill box to keep a week’s worth all organized. But still. Not only are they expensive – yet another recurring cost each month, this one about $200 – there’s just so many of them. I can’t fathom having to swallow that many pills every day for the rest of my life. Right now, Logan’s really excited about them – Jason’s been telling him the’re super pills. Will the novelty wear off once Logan realizes these are for the long haul?

At least the diet has an end date. We’re still lingering in Stage 3, but soon we’ll move into Stage 4. We simply have to. I admit I’m filled with dread more often than hope lately, and that part of me that wants to quit seems to grow bigger every day. This diet is hard. The supplements seem insurmountable. And my chest feels gripped by a tight fist that’s making it harder and harder to breath. Some days, I simply can’t tell if this a better alternative to junk food and meltdowns.

Feeling: Clueless

The one good thing from this week is we discovered Logan LOVES Halloween pancakes!

  • 6 eggs
  • 1 can of purred pumpkin
  • Dash of cinnamon

Blend ingredients (Jason uses a blender; I just use a fork). Grease skillet with coconut fat (we save the fat that solidifies when we make coconut milk to use). Drop small dollops of batter onto a hot skillet and cook — like regular pancakes, little air bubbles pop up in the center when they’re ready to be flipped.

Starting Stage 3

I cheated.

Somehow, Stage 2 felt harder than Stage 1–the monotony began wearing and wearing on me. So when my husband and I went out to dinner for our date night (which we’d planned months ago, way before we’d decided to start GAPS), I decided a special dinner was worth it.

And oh my god, it was. Mushroom bruschetta! And wine! And pumpkin creme brulee! 

Of course, it made going back even harder.  All week, in fact, I then struggled to get myself back to truly sticking to it. I’d cheated, and it was all too easy now to say, oh, well, some peanut butter on celery sticks or a slice of cheese won’t hurt… My problem was I was hungry, and I had slipped too far from my mantra of more stock or broth to get by.

Worse, I was slipping a little with Logan, too. I didn’t push the broth as hard as I should have this past week, knowing it’d only be a battle I just didn’t feel like fighting every night. His daycare class learned how to make applesauce one day this week, so I let him have some, too (Jason and I premade special fermented applesauce–no sugar–that he took to substitute, but still, he’s not supposed to have apples yet.) Then yesterday he ate almost a whole bag of raw carrots.

Excuse me for whining again, but having a child on a special diet is just so damn hard. We had a five-hour trip on Saturday, and carrots were was pretty much the only thing I could have given him to eat on the road. Fast food is of course out, so I tried packing lunches for everyone. But what? We can’t do sandwiches or lunch meat or baked goods. Anything hot that I could have made ahead of time would have been cold by lunchtime. The only solution I could come up with was peanut butter on celery sticks, carrots and the rest of our fermented applesauce.

And–apologies for more whining–it sucks not being able to just give in every once in awhile. We went to a pumpkin patch on Sunday, and though it was a blast, I hadn’t planned for it to be an all-day event. But suddenly, I realized that breakfast had been three hours ago, and by the time we got home, even if we left right that second, we wouldn’t be home until 2:00, and the kids would be crazy starving. The best Jason and I could come up with was ordering hot dogs sans buns from the orchard’s cafe (it was either that, nachos, Doritos, pie or ice cream) and once again letting Logan have an apple. He’s now had more apples these past two weeks then our whole family’s had in the past year.

(Side note: Does it strike anyone else as ironic that on our trip to the pumpkin patch — whose whole reason for being is to grow a hearty vegetable — we struggled to find healthful food?)

At the pumpkin patch

At the pumpkin patch

But what could we do?  Our lives revolve around food. And in a culture where food is used for decoration and chemicals now pile on our plates, the best we can do is admit we faltered and try to pick up the pieces again. For Logan, daycare has been fairly good this week, and in general, it feels as though the diet is helping us move in the right direction of healing Logan’s gut in hopes of alleviating his emotional meltdowns and assisting him with more focus and interest in others. But clearly, doing our best will always be a struggle. 

We at least had a very successful trip to a Halloween party. The mounds of Skittles, Goldfish crackers and chocolate cookies didn’t even faze Logan. He simply asked for his gelatin treats and fizzy water and was perfectly content. (By the way, a huge thank you to Erin for turning us onto gelatin and the recipe below, and double thanks to my mom for making them for us since I’ve been too busy! Made with plain gelatin, strongly brewed peppermint tea and a drop of honey, the kids and I think they’re delicious–and they’ve saved snack time. Of course, my taste is clearly altered–I tried sharing them with two friends at the Halloween party, and I thought one of them was going to retch in the sink.  Sorry, Lesley and Trisha.)

Feeling: Bland

Peppermint Gummies
(modified from Cara at Home Health Happiness)

  • 1/2 cup coconut milk, full fat or light
  • 1/2 cup strongly brewed peppermint tea (decaf)
  • 6 tablespoons gelatin
  • 2 tablespoons honey

Combine all ingredients in a saucepan, stir until all lumps are gone BEFORE heating. Heat over medium-low to medium heat for 5 minutes or until all the gelatin is dissolved and the mixture is completely liquid. Pour hot mixture in to an ungreased glass, ceramic, or metal 8×8″ pan or dish. Allow to cool for 10 minutes on the countertop, so you don’t shock it by sticking it right in the freezer. Once it’s no longer super hot, transfer to a level place in the freezer to set up for half an hour, or until firm.

The Stage 2 Slump

GAPS 2 isn’t much better than GAPS 1.

We spent four days in Stage 1, sticking to broth, boiled meats and boiled vegetables. Everyone was getting more and more sick of the same three meals repeated; so, even though I couldn’t really tell based on behavior or physical evidence that Logan’s body was healing (i.e., stools), we moved into Stage 2.

“A junk food egg!” Logan exclaimed, seeing his eggs cooked in ghee rather than poached in stock.  He was beside himself with glee.

But other than ghee, there really wasn’t much difference between the stages. Fresh herbs could be added, but I’m such a bad cook that those don’t help me much; I don’t know what to do with them. I think our only other Stage 2 addition was fish, instead of just boiled beef and chicken, and Logan ate about five fillets of tilapia in one sitting.

Still, he and I were both losing weight. Logan’s lunch and snack boxes came back from daycare and school completely full–he wasn’t even taking a bite of food. We could coax him into eating at home, but only with enormous patience, threats of no books before bed, and promises of “root beer” (fizzy mineral water with two stevia drops) if he cleaned his plate.  Then we added yogurt. Finally, something kids define as a “snack,” and something he would eat at daycare.

But despite additions in our diet–or maybe because the additions were so few–GAPS suddenly became harder.  I felt tired and sick of food.  The thought of chicken made me reel.  I was more tempted than ever before to cheat; the pride I felt from sticking to a spartan meal plan began to wane.  

Logan seemed to echo these thoughts.  His behavior at daycare changed sharply, with more aggression each day and more screaming outbursts.  Picking him up each afternoon became more and more draining each day–listening to Miss Amy recap his day seemed to just zap what little energy I had left. 

And his eyes were so baggy.  Even though he slept fine — in fact, it could be argued he is sleeping better on GAPS because now he falls asleep right away rather than lying awake for two hours — he acted tired.  I decided to give him another apple, thinking he might just need the extra sugar, but it didn’t seem to affect anything.  And on top of his sluggishness, the little scratch that had been under his nose seemed to be growing into a net of red bumps circling his mouth.

Thank you to everyone who supported our walk for autism! Together, we raised $1,500!

Logan at our fundraising walk for autism. We are so grateful to everyone who supported us! Together, we raised $1,500 for charity!

The GAPS book makes it seem like anyone can try to reintroduce dairy, our MAPS doctor told us, but in her experience, she’s seen very few be successful with it. The rash, the aggression, the lack of energy–Logan was going to have to give up dairy (again).  So much for our one snack.

Like ending Stage 1, we might just have to rush out of Stage 2 simply because we can’t take it anymore.  So, onto Stage 3.  With a sigh.

Feeling: Lethargic

Our best Stage 2 meal:

Zucchini casserole from Cara at Health Home Happy (this website was a lifesaver for us in Stage 1!).

  • 2 lbs boneless, skinless chicken breast, cut into cubes
  • 4 zucchinis
  • Sea salt
  • 1/2 cup chicken stock

Cube the chicken into bite-sized pieces. Slice the zucchini into 1/2 inch rounds. Place chicken and stock into the bottom of a loaf pan, sprinkle with salt, and top with zucchini.  Cover with foil and bake at 350 degrees F for 45 minutes or until chicken is cooked through and zucchini is soft.

Surprisingly, even though it involved touching raw chicken (I’m slowly getting over that), this was incredibly easy to make.  And Logan actually ate every bite!  

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