ASD Recovery Recipe: Cabbage Beef Rolls

Here’s another recipe modification from our visiting super-chef, “Aunt” Coleen. For my skill level, this counts as “fancy cooking” and might be nice to prepare when you’d like both your recovering child and your dinner guests to enjoy the same meal. Martin devoured two of these rolls the evening that Coleen made them; two mornings later I chopped up a third roll and added quail eggs to create a breakfast treat.

1/4 lb. ground beef
2 tsp fresh ginger, peeled and minced
1 cup cubed butternut squash
1/2 cup broccoli sprouts
6 leaves Napa cabbage
3 tbsps Coconut Secret raw coconut aminos
1 tbsp arrowroot powder
3 tbsps filtered water
1 tsp sesame oil
1 tbsp oil of your choice

Brown the ground beef and ginger in 1 tbsp oil with 1 tsp sesame oil. Add butternut squash and coconut aminos. Cook 7-10 minutes, until squash is tender. Add the arrowroot powder and water to thicken. Throw in the broccoli sprouts just before removing from heat.

Steam the cabbage leaves 7-10 minutes, until tender and pliable.

Spoon a portion of beef mixture into each leaf, roll tightly, and secure with a toothpick.

(Teaser: Tomorrow I’ll post the recipe for a nice, easy sauce to complement these rolls.)

This Again

Months have passed since I had to write a post like this one. I had hoped to be done with them forever.

It’s 4:58 a.m., Monday. I haven’t slept yet. I’ve dozed, a few minutes at a time, mostly on Martin’s bedroom floor. One of these catnaps cut circulation to my left arm, and I snapped awake with stinging-nettle pain from shoulder to fingertips. I mean, hey, it’s a floor.

Now I’ve given up trying to sleep. I’m sitting in a chair next to Martin’s bed, using my right hand to restrain his ankles and my left hand to tap on an iPad I’ve shielded from his view. I’m right-handed. Typing with my left is taking forever.

Granted, at this moment I have no shortage of time.

Martin was exhausted yesterday. (Seems strange to call Sunday “yesterday,” because for me it’s one continuous day.) In addition to recent lethargy, he’s been foggy and tired since our Thursday visit to his Track Two doctor; we hit some delays, resulting in Martin’s being awake until 11:00 p.m., and then again from 1:30-2:15 a.m., and he hasn’t got back on track yet. He went to sleep last night by 7:30 p.m., with a sitter. Adrian and I were dining with friends. We arrived home at 10:45 p.m. Martin woke at 11:30 p.m., before Adrian and I could get to bed. We took turns sitting with Martin for an hour, then left him alone to find his own way back to sleep.

No such luck.

He spoke, called to us, and griped from his bed, keeping me from any meaningful rest. At 2:35 a.m. he appeared in my and Adrian’s room, demanding attention. I led him back to bed and camped out on his floor, hoping my presence would help. It hasn’t. Martin has alternated chatting (“the Empire State Building,” “bunny rabbit,” “Mommy is sleeping on the floor!”) and singing (the Battle Hymn of the Republic, scattered Johnny Cash lyrics), in constant motion—legs a-kickin’, tiny hands tapping the headboard.

Now it’s 5:40 a.m. (I told you this typing was taking forever), so Martin’s been awake more than six hours. He doesn’t mind my restraining his ankles. Nor does it seem to be helping. He’s downright jolly, wide awake.

He’ll have to stay home with me today; I can’t dispatch him to school on four or five hours’ sleep. Yesterday, Sunday, I was tired enough to feel confused and mildly depressed. I’m not looking forward to a Monday on no sleep, unable to touch accumulated office work and rearranging all plans to entertain a crabby boy.

I think he’s beginning to nod off, at long last. His breathing has regularized, his sing-song faded. Still, I feel his ankles bounce under my right hand. Martin is simply unable to settle. Even as he dozes, his mind sends energy jolts.

What is perhaps most frustrating is that sleep—Martin’s sleep—was both our clearest indicator of progress and the biggest single lifestyle improvement for our family. When he sleeps, we sleep, at least a little more.

If we lose the sleeping, I don’t know what I’ll do.

Not Going So Well

Promises do nothing for me.

I don’t believe anyone who assures me s/he can achieve a particular goal with Martin. I’ve admitted that I’m a skeptic. Hearing that a treatment definitely will help Martin, or that Martin certainly will recover, increases that skepticism. Team Martin has no room for promisors.

This week we visited Martin’s excellent Track Two doctor, and—though I of course prefer upbeat news—it was not unwelcome when she admitted that Martin seems less physically healthy, and more autistic, than he did during our August visit. Indeed, her words confirmed my own observations (as I’ve written); any other assessment would have left me suspicious. She even pointed out some symptoms I’d not yet noticed, such as visual self-stimming.

I have nothing against reality. I can’t hope to coordinate Martin’s recovery if I don’t see the bad and the ugly infringing the good.

Here’s an uncensored account of where we stand: According to the doctor, Martin exhibits less “spark” than over the summer. His eye contact has faded along with his name responsiveness. His belly, which had flattened, is distended again. What I thought were self-inflicted scratches resulting from yeasty itchiness (which also is present) instead appears to be a rash, possibly from exuding toxins/pathogens through the skin. He is self-stimming more, his muscle tone has slackened, and he’s again cycling in and out of lethargy.

Yeah.

I’m relieved to report that the doctor’s evaluation included an action plan along with the bummer news. We got the yeast under control earlier this year; we may have taken Martin off the yeast-fighters too early. He’s going back on them now. For the next few months, we’re going to concentrate on annihilating yeast overgrowth again, and on starting bio-film work. Martin’s tests have revealed bajillions of pathogens in his gut. They’re suspected to be hiding in and below bio-film, the pissant little bastards. I wish I had a teeny-tiny Lilliputian-to-a-Lilliputian Glock with which I could take out yeast flora and gut pathogens. Alas, instead I have the likes of Yeast Aid and saccharomyces boulardii.

So that’s where we stand, warts and all.

Am I discouraged? Daily. Am I encouraged? With every glimpse of where we can get to.

However infrequent, right now, those glimpses may be.

ASD Recovery Recipe: Sauerbraten

Maybe we’ve gone too far? Over the last two days, Martin has eaten one pound of beef, in the form of sauerbraten made by “Aunt Coleen,” his visiting chef. Coleen modified her sauerbraten recipe (removing juniper berries and ginger snaps, for example) to fit Martin’s dietary requirements, as follows:

1 lb. beef (stew chunks or top round)
2 cups apple cider vinegar
2 cups water
3 bay leaves
1 tbsp mustard seeds
1 tbsp cloves
2 tbsps fresh ginger, peeled and minced
1/4 cup coconut crystals
arrowroot powder as needed

Whisk together vinegar, water, spices, and ginger to create marinade. Cut beef into bite-size chunks, combine with marinade in an airtight glass container and marinate for one-to-three days in the refrigerator.

Pre-heat the oven to 325°. Add the coconut crystals to the marinated meat and mix well.

Brown the meat in the marinade in a cast-iron or stainless-steel pan. Transfer to a glass casserole, cover, and cook two hours in pre-heated oven. Remove bay leaves, cloves, and seeds from juices, then stir arrowroot into the sauce until you reach the desired thickness.

Coleen observes that, to feed vegetarian me and Adrian along with Martin, I can make this recipe with double the marinade and use the extra marinade with tempeh or, especially, seitan: two separate batches of food for my mixed vegetarian-and-non-vegetarian family.

This sauerbraten is reasonably sugar-intense, given the coconut crystals, and the arrowroot adds starch. Try to minimize those ingredients as possible—and perhaps keep your child from eating the entire recipe in two sittings?

Pondering the Destination

How am I going to know if Martin recovers?

Martin’s autism, for me, is defined by negatives. He doesn’t ask questions. He doesn’t respond to his name. He doesn’t pay attention. He doesn’t use pronouns. He doesn’t have strong fine motor skills.

I wonder how neurotypicality will be defined. If I remove the “n’t” from each of those sentences, is Martin recovered? Or will he need to achieve some level of “can do” before we call him neurotypical?

The determination will be easiest if I can define recovery be negatives, too, by unusual behaviors discontinuing. For example, I’m writing this at the airport, waiting for a flight. Martin is seated in the chair next to me, playing with a toy train. He is not crawling under the row of seats trying to wedge himself into the smallest, most secure crevice available (which he used to do). At the security checkpoint he did not refuse to hold my hand and did not bolt. He has not had a potty accident all morning.

On the other hand, he did sort of freak out and refuse to wash his hands when the bathroom had only hot-air dryers, no paper towels. (I had some paper towels in our travel backpack. Meltdown averted.) What if he had not panicked at the thought of trying the hot-air dryer? Then would this be a neurotypical trip to the airport? Probably not. He still can’t ask questions or speak very clearly.

So I suppose our journey will end with a magic combination, when the peculiar behaviors cease and Martin attains skills that rival an average neurotypical peer’s.

Which I also suppose means our journey may never end. I mean, I engage in peculiar behaviors. (As far as I know, it is not normal that I refuse to start the washing machine until I’ve located each of our four cats, to make sure none is in the washer. Even though I’ve just checked the washer and confirmed that no cats are inside. Twice.) Moreover, I lack any sense of direction, can’t draw more than a stick figure, and couldn’t sing on key to save my life. So I would say I can’t find a new location, illustrate, or sing as well as an average peer, neurotypical or otherwise. Come to think of it, despite being athletic, I can’t even play basketball. Just not a skill I have.

My “can do” is not up to snuff. Looks like I need a recovery journey, too.

[Sigh.]

Friendships

When Martin has a good day, I allow myself some daydreaming about life once he recovers.

So far, today has not been great. But yesterday was pretty good, and I did some daydreaming. I asked myself this: What is my No. 1 goal? If I could pick one facet of recovery wherein we succeed without qualification, what would it be?

Easy answer: friendships.

In post after post, I’ve extolled my husband, Adrian. We are (quoting a pal) the Disturbingly Happy Couple, co-participants in a head-butting, growling, grappling marriage of equal parts challenge and laughter. Without Adrian, I would, no doubt, lack the strength to recover Martin.

But there is another achievement of my adult life that I value just as much as my marriage: the ability to build and maintain friendships.

I didn’t have close friends growing up. That is to say, until I was in my 20’s I kept myself apart from others. I can perceive now that I had too little self-esteem as a young person, and that I masked that shortcoming with too much self-confidence—meaning that I ignored the needs of my peers and expected them to care for mine, without reciprocity. I had acquaintances, and “friends” in the sense of people with whom I interacted socially, but I never opened up to anyone. And if anyone tried to open up to me, I shut down.

As an adult, fortunately, I got better at internalizing humility in a way that led to more genuine relationships. It was a painstaking process, learning to unlock feelings and to expose my own weaknesses, and especially, to empathize. Inviting others out “just to talk.” Listening. Returning phone calls, writing thank-you notes, keeping track of what was going on in homes besides my own.

Closer friendships—I realize that this probably isn’t news to anyone but me—improved my life immeasurably. Today I marvel at the bone-headedness of self-isolation.

Adrian and I do RDI therapy with Martin. Last spring we watched a five-hour video explaining how RDI works. The first couple hours made for pretty awful viewing; a doctor enumerated the neurological bases for autism, and how those behaviors manifest themselves behaviorally. Dismal statistics appeared on-screen, noting that even the highest-functioning ASD adults, traditionally treated, do not live independently or enjoy significant peer relationships. Then the doctor appeared and reiterated that, unless their course of development is altered, high-functioning children with autism will not learn to make and keep friends. They will never have significant peer relationships.

I was mortified.

Another parent once told me, about her eleven-year-old son on the spectrum, “He doesn’t have friends except for one. But if he doesn’t care, why should I?”

I think she must be wrong. I think her son must care.

Martin will care if he has friends. And so will I, always.

One More Memory, to Add to the Others

I found one more journal entry that’s proving especially helpful as we wage this second great battle against yeast overgrowth in Martin’s belly. It’s dated 16 February 2011, not long after we started biomedical recovery:

Martin has been—autistic. Like, really bad. Worse than Asperger’s Syndrome, way below high-functioning. His sing-song self-assurance speech has come back, he walks on his toes, he has no focus, the percentage of times he responds to his name has tanked, and the nights have been hell. Just hell. He’s up for hours at a time, unpredictably. Sometimes 1:30-4:50 a.m.. Sometimes 3:20-5:45 a.m. Sometimes he wakes at 5:05 a.m., and that’s it. He’s up. Adrian and I are beyond exhausted. Last Saturday the hopelessness set in, and I broke down, weeping at my desk as Adrian promised that it would get better. That it had to. (Since then Adrian has taken more of the burden at night, and I’ve rebounded. Not a finally-getting-back-to-the-gym kind of rebound, but I make it through the day without tears. That’s what this fight does to me. Some days there are tears, and better days there aren’t.)

I would be freaking out about Martin’s apparent regression, but I remember the process Kathleen mentioned once before. It’s called die-off. Martin has yeast overgrowth in his belly. Our first goal is to starve the yeast, to kill it off through attrition. That’s why we’ve cut sugar, such as juice, from his diet, and why we’re drastically reducing carbohydrates, which break down into sugar. The medium-chain triglyceride oils he takes are intended to help kill yeast. When the yeast begins starving, it flares up and causes a temporary spike in autistic symptoms. That’s die-off.

It’s been two-and-a-half weeks since we cut all gluten and soy from Martin’s diet, and one week since we started giving him the MCT oils. In response to my desperate questions, Kathleen assures that enough time has passed for die-off to start. I am skeptical. Two-and-a-half weeks? Before we’ve cut all grains? I can’t believe it’s so easy to reach the die-off stage. I had assumed a longer, more arduous route.

It is absolutely possible, Kathleen says. These are signs of die-off. We’re making progress.

Memories. Shoot, Now I’m Glad I Wrote Them Down

Before I started blogging in August, I kept a computer “journal” of sorts, wherein I jotted notes of how we were doing, in case I ever did want to start documenting the process. I haven’t opened that file since early August. This morning, however, I dug out the relevant USB storage device to search for a few paragraphs I remember drafting on the topic of maintaining friendships. (Look for that post for later in the week.)

My readers know I’ve been frustrated lately, feeling stuck. Reading what I wrote earlier this year provides perspective. These entries, from my own journal, stunned me:

4/20/11. Parent interview at [Big Imposing Hospital]. Martin’s scores range from 1st percentile fine motor skills to 97th percentile school readiness (letters, numbers).

4/25/11. Martin is not as good as he was over the weekend. He’s a little out of it. In the late afternoon, after Samara leaves, he becomes fussy, whiny, irritable. Finally, just before 6:00 pm he has massive foul diarrhea, and I recall that he has not pooped since Saturday morning.

4/26/11. Martin isn’t having a great day. No desire to work with [his ABA therapist]. [His PT] calls him “weak.”

4/30/11. In the mail come [the Track Two doctor’s] notes from our call. Among them is written, “Mother getting discouraged.” I’ve got to do a better job with keeping upbeat.

5/1/11. Take Martin to church with chips, books, toys. He hides under my maxi-dress, and his seltzer with kombucha squirts all over newcomer in front of us. Throws a tantrum leaving church. [A friend] patiently holds my purse and his bags as I strap screaming child into car. Then I shut door and—silence. He’s locked inside. [My friend] nods in salute to the silence and hugs me.

5/2/11. Martin is hot in defiance phase. Hates every change. Doesn’t know what he wants. Refuses even what he loves, like coconut oil.

5/3/11. At 7:40 pm (during bedtime) he unloads three days’ worth of poop, mostly undigested food. I consider the irony of seeing my carefully prepared concoctions emerge from the other end in more or less the same form.

5/6/11. Through the grapevine I hear about a typically developing playmate of Martin who has not succeeded in getting a pre-school placement for next fall. She will stay at the New York Kids’ Club instead. I feel some schadenfreude creeping in. I tell myself that under the circumstances, schadenfreude does not make me a bad person. At least, not that much.

5/9/11. Horrible bedtime. Martin is so worked up, and he fell asleep on the school bus coming home. For the first time in weeks I have to restrain him. He struggles and cries. I miss a business call at 8:00 pm.

6/6/11. A disaster of a day. Martin is awake since 1:40 a.m. He is miserable, whining, crying all day. [His babysitter] cannot get him to nap. Nor does he sleep even in the school bus. I am running on two hours’ sleep. Call with Kathleen is unfocused, wandering. I express doubts. I wonder if we’re making progress. School report says Martin was in “more of a daze than usual” during circle time.

It’s November now. Martin sleeps, eats, and poops well. He engages in only limited self-stimming behavior, such as running back and forth. He walks heel-to-toe. He possesses sufficient body control and proprioceptive awareness that he rarely stumbles. My big complaints these days are continued poor attention, especially in group settings; echolalia and language delay, including the inability to ask questions; and fussiness when we deviate from plans or Martin doesn’t get what he wants.

I’m finding it helpful to recall the days when I had to worry about screaming fits, inability to sleep or digest food, and a craving for secure space that had Martin hiding under my dress.

I’m finding it very helpful.

ASD Recovery Recipe: “Catsup”

I thought I’d become pretty thoughtful and creative about substituting ingredients and devising ASD-friendly versions of foods Martin used to eat. Having a real chef in the house has opened my eyes to how much more I still can do. Martin has always loved catsup. Most catsup recipes call for tomatoes, brown sugar, molasses, onion, and garlic—none of which appears on Martin’s acceptable-ingredients list right now. Must that stop Martin from enjoying catsup? Not while his “Aunt Coleen” is visiting. For the last several days Martin has been happily dipping his squash or sweet-potato “French fries” into “catsup.” Here is the recipe Coleen created and prepared for him:

1 cup butternut squash, peeled and cubed
1/2 cup sweet potato, peeled and cubed
2 tsp fresh ginger, peeled
1 tbsp bee pollen
1/4 tsp grated cloves
1/4 tsp allspice
1/8 tsp mild curry powder
1/8 tsp ground oregano
1/2 tsp salt
2 tbsps raw agave nectar
1 tbsp apple cider vinegar

Boil squash, sweet potato, ginger, and bee pollen in just enough filtered water to cover, until tender. Do not drain. Add the remaining ingredients and purée with an immersion blender. Adjust cider vinegar as necessary.

Reinforcements Arrive

Last night, for dinner, Martin ate ginger-spiced beef with squash and broccoli sprouts, wrapped in steamed Napa cabbage and topped with coconut-cilantro sauce.

This morning, for breakfast, he enjoyed beef-vegetable-and-duck-egg hash.

Have I miraculously learned to cook meat-based delicacies?

No. The limits of my skill remain roasting a duck.

Instead, Martin’s personal chef has arrived.

If I have to have a son with autism, Providence has intervened to give me as much help as possible. Martin’s ASD was discovered early because an old friend is an early-intervention practitioner who was willing to travel to New York City and observe him. When our family decided to undertake a biomedical recovery process, all the pieces fell into place to allow a full, comprehensive approach. My mother is retired and loves to bake Martin’s special crackers, muffins, and cookies.

Now that we’ve decided to feed Martin meat products, and I’ve admitted that I know nothing about preparing and cooking meats, another old friend has stepped in—a chef! My high-school friend Coleen is a chef at a private club that closes for several months during the winter. After reading my sad attempts to conjure meat dishes, Coleen contacted me and volunteered spend some of that off-time with us, cooking for Martin and teaching me to do the same. She arrived on Wednesday, for two weeks, and has taken over my kitchen already. She’s in there now, putting together Martin’s dinner. Even Adrian came home to a fresh, gourmet meal yesterday. The boys don’t know what’s hit them.

I’ve admitted that I am a Type-A personality. In many respects, Martin’s ASD (and especially the recovery process) has led me to buckle down and seize control of everything—food, environment, sleep, travel, clothing, medical care, vaccinations.

On the other hand, I’ve also taken actions that come less naturally to me. I’ve started listening to more non-mainstream sources. I’ve done limited on-line networking. Most prominently, I’ve stopped trying to travel this road alone, and I’ve accepted help. I’m happy to have it.

I’m going to wander into the kitchen and see what’s cooking.