Week 49: Stillness with changes

When Logan was diagnosed with autism in September 2013, we were told he was really high-functioning.  Test again in a year, his evaluation team said–something might change.  And a lot of things did, actually, change–Logan’s diet has completely changed–no gluten, no casein, no sugar, no soy, no artificial dyes, and heavy probiotics–and diagnosis measures for labeling someone as autistic have greatly changed, too, from DSM-IV to DSM-V.  It now seems like might be a little harder to receive a diagnosis of autism.  In fact, the evaluation team at Fraser told us Logan actually might not qualify under DSM-V; it was hard to say.  

A few weeks ago, our name came up on the wait list for the University of Minnesota Autism Clinic, a wait list we’d been on so long, I had completely forgotten about it.  And even though we didn’t really need a diagnosis from them anymore, we decided it’d be interesting to hear a second opinion, especially almost a year after those two really big changes.  Maybe–maybe–with all the changes, we would hear that the diagnosis would be gone; Logan would no longer have autism.

Logan brings chicken, asparagus, quinoa and green beans to daycare for lunch.

Logan brings chicken, asparagus, quinoa and green beans to daycare for lunch.

Of course, that was silly, wishful thinking.  The results still came back the same.

Well, basically the same.  Logan’s diagnosis of PDD-NOS went away (a result of the switch DSM-V, as there is no “PDD-NOS” anymore), and now he is diagnosed with simply autism.  I know that PDD-NOS wasn’t necessarily a better label than autism, and it wasn’t anything I shouldn’t have expected, but it still felt like a letdown all the same.

My son has autism.  Still.

After all the changes we’d gone through.  After all the maturing he’d seemed to do.  And all the progress he’d seemed to make: no longer needing speech therapy, catching up to his peers with fine-motor skills through OT sessions, learning to take deep breaths to calm himself when he approached meltdown state, and recently wanting to make friends and invite them over to play.  Still he struggles with eye contact.  Still he waves his fork and spoon in front of his eyes at dinner, intensely focused on the movement.  Still he will let out little scream bursts when excited; still he’ll slip into baby talk mode; still he’ll fail to follow directions as complicated as, “get dressed, please.”  

I’d changed my cleaning routine to eliminate as many chemicals as I could from our house.  I changed all our dishware from plastic, kid-proof plates and cups to glass ones.  We changed his nightly bath routine, adding Epsom salts.  We’ve changed so much, but still, nothing’s really changed.  Still, the a-word hangs next to his name on a slip of paper.

And still, I am trying to be optimistic, but it gets hard, especially when I read scary stories in the news about the transition to adulthood for people with autism.  They drive me to keep trying to change things, things I can fix, things I can improve for my son.  Because sometimes, they make my body still–paralyzed–with fear.

So still, we are pushing on with as close as we can get to the BEDROK diet.

Feeling: Nervous

Trying out a new food

Trying out a new food

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Week 48: Choking back frustrations

Even before we had kids, neither my husband nor I were great at keeping a clean kitchen.  When Jason responds, “Fine, I’ll clean the kitchen,” he usually means “…in a week or so.”  Having two kids and adding a special diet has definitely been a test of my Martha Stewart factor, one I admittedly fail probably more often than not.  But I try.  

In fact, I’ve been trying really hard lately, as I’ve decided to stop cleaning with chemical-based products like Lysol.  I’ve read plenty of articles suggesting people with autism have bodies that are unable to move metals and chemicals out of their systems, and after I started cleaning with natural products, I realized that “remove toxins” from the home is in fact one of the steps on TACA’s Autism Journey Blueprint.  So now when I clean, I use baking soda or apple cider vinegar–of course, the key words there are “when I clean.”

The dishes just keep piling up.

The dishes just keep piling up.

“When” is even more true now, as the straw that broke the camel’s back might just have fallen: Our dishwasher has finally gone kaput after about a year of half-working.  We’d tried fixing it (both Jason, his brother-in-law and a repair man), and tried switching detergents.  Everything would seem to fix the problem for a day or so, and then we’d be back to semi-sticky plates and saucers.  And after spending 45 minutes hand-washing dishes, I definitely have no energy left to clean anything else.  

Nothing seems fair, does it.  I suppose it parallels with Logan and our diet attempts for the past (almost) year.  It seems to be working, then reports like last week, that Logan’s been aggressive, hitting and saying things like, “I’ll choke you!”  

The only explanation I can come up with (other than maybe stacks and stacks of unwashed dishes on the counter pisses him off, too, but I don’t really think that’s the case) is fruit.  Once again, I’ve been trying to sneak fruit back into his diet.  Over the past two weeks I’ve allowed him a few slices of green apples and a few measly raspberries and blueberries.  I know fruit is supposed to be off the diet, but I can’t help thinking — can this tiny bit seriously hurt?

Apparently it can.  So he’s off fruit again — we’ll see how this week goes.

I’ll blame the dishwasher, but truthfully, I just wanted to be lazy last week and not cook–instead, I took my kids for a few hikes and to the beach.  So I don’t really have a new recipe that I tried, but I’ll elaborate on an old one I mentioned in Week 2.  I hadn’t made it in quite a while, since it’s not the healthiest meal ever, but at least it doesn’t have any sugar, gluten or casein.  I call it No-Sugar Mac:

My No-Sugar Mac

  • Add 1 package of shirataki noodles to boiling water and boil for a few minutes (I like the thicker, fettuccine-style ones).
  • Meanwhile, pour a small amount of chicken stock into a saucepan and add a handful of shredded Daiya cheddar-flavored vegan “cheese.”
  • Stir constantly to melt the “cheese” into a sauce.
  • Drain noodles and pour melted sauce over noodles.
  • Then I take a kitchen scissors and cut the long noodles down to bite size, since neither Logan nor Sadie is all that great with a fork.  Obviously, this would be optional for kids with more dexterity. 

As you can see, I’m still not really following directions (like I posted in Week 45).  But it works.

Feeling: A bit deflated

 

Week 47: Measuring Success

“I see the bill,” the man next to me grumbled as we sat in the waiting room, both dropping off our kids at day treatment.  “But I don’t know if I see any results or not.”

I nodded.  That sounded familiar.  Bills for therapy sessions and receipts for higher grocery bills have been piling up for us for months.  And like him, I’m constantly wondering about results, too.

As we talked, our kids were head-to-head, both bent eagerly over an iPad racing app.  Logan was grinning from ear to ear as he watched Andre play, and Andre looked quite proud to explain to Logan how he was beating the level.  Maybe that’s a sign of success right there, I thought–social interaction, sharing a combined interest, taking turns–would these things have happened without day treatment or diet?

Suddenly last week, Logan has an intense interest in our cat and dog.

Suddenly last week, Logan has an intense interest in our cat and dog.

It’s easy to miss moments like this because they’re so small, so normal.  It’s much easier to measure against every night at 8 p.m. when Logan has his meltdown that I have to put Sadie to sleep first or that he can’t use his old type of toothpaste anymore.  It’s much easier to remember him running through the kitchen yesterday afternoon babbling “ba-ba-be-do-goo-goo” or whatever nonstop, nonsensical baby talk it was.

I was trying to cook, my weekly challenge, and even though this recipe for curried quinoa was super simple, it was impossible for me to do with Sadie crying every two minutes that Logan had taken one of her toys and Logan running around babbling.  Seriously, I don’t know how women get anything done with kids in the house.  Luckily for me, while I put on my referee hat and shuffled between sending Logan to time-out and assuring Sadie she didn’t need to scream bloody murder over a tipped-over dollhouse, my husband stepped in to finish the recipe.

Grilled chicken and curried quinoa

My husband grilled a chicken, and it looked super fancy on top of my curried quinoa.

Curried Quinoa (from the Body Ecology Diet book)

  •  1-2 tbsp. ghee
  • 1 tbsp. curry powder
  • 1 tsp. sea salt
  • 2 cups cooked quinoa
  • 2 medium onions, diced (I only used one, and even that was a lot)
  • 2 cups cooked veggies (I just used frozen peas)
  1. Melt ghee in skillet
  2. Add curry and sea salt
  3. Saute onion
  4. Add other cooked vegetables and saute for several minutes
  5. Add quinoa and adjust seasonings.

I added garlic, and Jason cooked the quinoa in chicken broth instead of water, too.  I actually think it’s the most delicious dish I’ve had in a long time–and even Logan ate it!  If we measure success by looking at the small things, I suppose I’d have to say I’m progressing as a cook, too.

Yesterday at the park I was given another measuring stick of progress: as Logan rode his bike in circles on the basketball court and I pushed Sadie in the swings, a van drove up and parked.  A boy, a teenager from the look of his height, ran toward the big toy.  But his face argued a younger age; it registered pure joy rather than the nonchalance of a teen.  His gait, too, seemed almost choppy and he ran with his arms held out at the sides, which is just how Logan runs.

When he reached the big toy, he confirmed what I’d guessed–he was clearly on the autism spectrum.  He started grunting, loud, deep grunts, and planted himself down on his knees.  He continued grinning and grunting as his mom walked up, sat by him and gestured to the slide and the swings.  I could tell she was trying to interest him in something other than just tracing the pattern of the metal climber.

But the boy was clearly excited, clearly enjoying the warm sunshine of the lovely day.  It made me happy that he was able to enjoy the park–that except for us, it was empty, without the older kids and tweens who are usually there.  I don’t know that they would have made fun of this boy, but I kind of suspect they would have.  He was different–very different–and had I not spent the past year reading about autism, I’m sure I wouldn’t have understood his grunting noises as his way of communicating joy.  I probably would have been a bit nervous by his differences, too.

Logan is far from grunting to communicate, and I think he has probably always been much more higher-functioning than the boy at the park was.  But it reminded me of when he was 2, just over 2, and still not talking but grunting and pointing to communicate.  Whether it’s from therapy, diet or simply Logan himself, we have seen a great measure of success.

Feeling: Proud 

 

 

 

 

 

Week 46: Sports and sandwiches, SIR!

I feel almost guilty in admitting: I have not watched any of the World Cup.  I say it makes me feel sort of guilty because it seems like the entire world stops for this tournament–even the annoying talk radio show my husband listens to every morning comments on it; you can practically hear them shrugging as they debate a sport they probably don’t care an ounce for.  But they know they have to, because it’s sports.

In sort of the same way, I feel oddly obligated to like sports and try to help Logan like sports.  When I was a kid, sports seemed ubiquitous thanks to my mother, my brother, my cousins and everyone else, it seemed; now that I’m married, they’re still there thanks to my husband.  He’s always recalling his favorite childhood memories of playing baseball or football until the sun went down on some grassy neighborhood field.  

It’s probably a common blow for parents of kids with autism, that their kid won’t grow up playing sports like they loved.  I know I read about it often enough.  But I also read about the ones who do love playing sports from time to time.  So we enrolled Logan in a mini-sports camp for a week this summer, hoping he’ll be turned on to soccer or T-ball (at least I was hoping for that; I know Jason was hoping Logan would make a few friends, which I told him would be pretty hard for him to do when his normal greeting to meeting a brand-new peer is still something like “Remember when Gavin ate that sandwich?”)

Logan, in a rare engaged moment from sports camp.

Logan, in a rare engaged moment from sports camp.

The first two days were rough.  He didn’t like waiting his turn to dribble the soccer ball all the way down the field, he didn’t want anyone else to have the green ball, and he clearly struggled to understand the rules for games like Duck, Duck, Gray Duck (that’s Duck, Duck, Goose for any readers not from Minnesota) or Sharks and Minnows, a soccer game.  Even Tag was hard for him — he loved being “It” and tagging people, but he’d cry and grow frustrated whenever he wasn’t “It” and that he was now supposed to avoid the “It” person.  He spent most of the morning either being lazy, sitting down in the field or pick grass, or being too aggressive, running into other kids or just leaning into them to bump them with his body.  He did better as the week progressed, though, so perhaps there is still hope.

Or maybe team sports just won’t be Logan’s cup of tea.  By coincidence, he also had two karate classes this week, thanks to a daycare friend’s birthday party that was held at the martial arts gym in town.  And it turned out, he loved it.

For one thing, there wasn’t as much down time as there was in sports camp.  The whole class followed the instructor’s moves; there was no waiting in line to take a turn.  And it was all very concrete–the instructor said kick your leg, and he meant kick your leg.  None of this “Run home! Run home!” when what was meant was run along the dirt path to the first base, then the second, and finally back to where you started with the bat.  Logan was able to jump and scream, and he didn’t have to worry about being too aggressive because he was simply kicking in front of him, not a person.  His favorite part, he said, was getting to yell, “Yes, SIR!”

Logan can easily focus on imitating his karate instructor.

Logan can easily focus on imitating his karate instructor.

And martial arts are supposed to be fantastic for kids with autism.  Its focus on discipline and respect, and even the repetitiveness of the motions is all helpful to many kids — but especially those with autism or ADHD.  Even though I was aware of these things going into the karate class, hearing the instructor talk about the importance of maintaining eye contact with the students made me sure this would be a good fit for Logan.  And–bonus–Logan said he wanted to go back!

What I remember most about sports from growing up is the constant driving around to all the practices, games and meets.  I remember gulping down an apple after school before basketball practice, which was just before CCD or whatever else we had going on.  This week I’ve once again bemoaned the fact that staying committed to Logan’s diet means no easy or quick food.

Or–at least it did.  Luckily, my mom found these paleo sandwich wraps at the natural food store, made from coconut meat.  They fit with the Body Ecology Diet, and even better, Logan loves them.  Doubly even better, they make lunches and meals when we have sports or other activities after work super easy.  On the not-so-great side, they cost $10 for seven wraps.  But if it means Logan can finally eat sandwiches, and if it gives us at least one quick and easy option, I suppose it’s worth it.

Logan’s new favorite food: ham and (fake) cheese sandwiches!

Feeling: Flexible

Week 45: On (not) following the directions

A friend complimented me this weekend, saying I was becoming quite the cook by the looks of my blog.  It struck me as funny—sure, I can now gather enough ingredients and courage once a weekend to try something new, but as far as actually making meals for a family, meaning pulling together a full supper every day, I would still be in trouble without my husband, the weeknight cook.

And following recipes gives me headaches.  For example, I tried making No-Potato Salad this weekend, with cauliflower instead of potatoes.  It called for:

  • 1 head cauliflower
  • 2 stalks celery
  • 1 small onion
  • 1 tablespoon parsley
  • 2 hard-boiled eggs
  • 2 tablespoons homemade mayonnaise
  • 1 teaspoon dry mustard
  • ½ teaspoon apple cider vinegar

The recipe listed only two steps.  This was a huge lie. 

My biggest pet peeve about most recipes is that they never list dicing vegetables as a step.  That should be Step 1, not as a side note in Step 3 (add the vegetables, which you surely have already diced and can’t do now because dicing vegetables will take 30 minutes and you need to move quickly to Step 4.  That always makes me want to throw the book out the window.).  In this recipe, dice vegetables and boil eggs should be steps, as well as make homemade mayonnaise.    

My husband pointed out that I should make the mayonnaise the night before.  So Saturday night I broke one egg, separated the yolk into the food processor, then added the teaspoon of liquid that recipe called for.  Now I was supposed to blend, but because there was so little in the food processor container, I knew the blade would pass right over the egg yolk, not even touching it.  So I added the ½ cup of olive oil, figuring with more volume, everything could now be mixed.

“Why did you do that?” my husband asked, coming in the kitchen at just the perfect time as always.  “You didn’t follow the directions—it says add the oil after you’ve blended the egg.”

“Why?”

“Because, ‘if you add the oil too quickly, the emulsion won’t work and the mayonnaise will break up,’” he quoted from the book.  “Come on—you’re a teacher!  You yell at your students when they don’t follow the directions!  Why can’t you follow them yourself?”

I sighed and dumped out my mayo attempt.  Together, my husband and I repeated the initial steps, only to find out that yes, when only the egg yolk and teaspoon of water and vinegar are added, the food processor blade will not mix any of it. 

“Start over again,” Jason said.  “And follow the directions!”

Now I was really getting frustrated.  Three attempts and almost half my eggs wasted just trying to get 2 tablespoons of mayonnaise for another f*cking recipe that I hadn’t even started yet.  Finally, Jason took out the hand mixer and whipped everything together beautifully. 

“The recipe says ‘food processor,’” I told him.  “You didn’t follow the directions.”

*

In Full Moon Feast, Jessica Prentice ponders this very question of following the directions when we cook.  She says, “If we were never taught basic culinary skills and principles, following the measurements of a recipe can be greatly empowering—enabling us to cook things that we otherwise never would be able to.”  How true this is for me – my own mother is amazing in so many ways, but definitely not in the kitchen.  I never learned to cook and now can only do so with the help of my cookbooks.  But Prentice goes on to say:

“Unfortunately, in modern America … we become obsessed with following the directions, doing everything just right…  Cooking turns into a sort of laboratory experiment, with strict procedures and parameters, and becomes too inflexible and unwieldy to be practical on a daily basis.”

This, too, couldn’t be more true for me.  I had thought my cooking experiments (like lab experiments) were impossible to maintain during the week because I was too tired or too inept, but perhaps it’s this scientific approach of finding a formula and following it that’s the problem.  What would meals—both preparing them and eating them—be like in my house if I were able to trust my own intuition?  Prentice suggests that food cooked this way takes on an even spiritual element.

“We are used to written recipes that are extremely precise, and we are used to following them exactly.  But until a little over a century ago there were no such things as measuring cups or spoons.  Recipes often gave some ideas as to measurement, but it was vague at best.  The cook had to rely on her own judgment skill, and even more important, her senses.  She had to really look at the food, to watch it, to touch it, to smell it, to taste it, even to listen to it.  This brought the food processor into greater relationship with her ingredients, and even into greater relationship with her own embodied sensual self.”

It might be a stretch, sensuality from food.  I wish I knew.

Sunday morning, I read the directions for my No-Potato Salad all the way through and felt very clever recognizing the omitted first step of dicing.  So I took out my celery and began.

And groaned.  Cutting vegetables takes forever, and while celery is pretty straightforward to cut (probably because it’s literally shaped straight and forward), things like onions and tomatoes baffle me.  I’ve never figured out how to cut a tomato – and the egg that I had to dice for this recipe?  How do you dice an egg?

(Oh, and by the way—boil the egg—there’s another step omitted from the directions.  Luckily Betty Crocker came to my rescue and gave very clear directions on how to hard boil eggs.)

I lined up my celery and neatly slit the stalks in half, lengthwise.  Then I slowly cut slivers off each end and then halved them.  It was meticulous work, which is definitely not my strong suit, but I kept at it, carefully.  I straightened up and smiled at my full bowl.  It had taken about 20 minutes to dice a measly two celery stalks, but they looked good! 

I was just beginning my onion when my husband came in. 

“That celery is all wrong,” he said.  “You gotta cut them smaller.”

“What?!” I cried.  “Those are perfect!”

He scoffed.  “Not for a salad.  Go to any grocery store and look at their—“

“Go away!”  I hissed, almost crying.  “I was so goddamn proud of those!”

My too-big diced vegetables

My too-big diced vegetables

He left.  I felt crushed and wanted to dump everything down the sink.  Instead I decided to ignore him and the stupid book with its omitted directions.  The cauliflower had been steaming for 7 minutes, as the recipe said.  But it didn’t feel tender, so I let it steam a few more minutes.  Later, after I’d cooled the cauliflower and stirred all the ingredients together, the salad seemed too crumbly and boring.  So I added twice as much the homemade mayonnaise as it called for.  I was committing what felt like a cardinal sin—I was not following the directions.

“I HATE cooking,” I grumbled as I shoved the bowl in the fridge.

Prentice has a theory, too, on why I’m not alone in my hatred of cooking.  Many women rebelled against it, she says, when society moved to prepackaged food.  Cooking is no longer a vital part of our lives because we can buy everything from the store.  Our role, as females, as providers for the family, has been devalued, and what little cooking we do lacks the love, expression and creativity it once had.  In other words, there’s no art in nuking a bag of frozen corn.  Food preparation did not used to be looked on as drudgery, Prentice writes, because it provided nutrition and was filled with “spiritual resonance.”

Against all odds, my No-Potato Salad was a hit at the barbecue I brought it to.  Our friends’ daughters asked for second and third helpings, and all the adults (including my husband) all said how wonderful it was.  It certainly wasn’t a spiritual creation, but it was tasty, nonetheless.

Feeling: Almost nostalgic for days before I ever lived  

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