Hives

Martin is allergic to horses. He didn’t always present as allergic to horses. When he was four and five years old, he did hippotherapy weekly, without problems. When he was eight years old, on a visit to Costa Rica, we went horseback riding on the beach: Martin, Adrian, my brother-in-law Pancho, and I. We rode for an hour. I was second in line; Martin, wearing shorts and a small t-shirt, was third. Every few minutes I turned around to glance at him, make sure he was still riding comfortably. I saw no issues. But when we arrived back at the stables, and I was able to see Martin up close, I could see that he was covered in a red rash. Rashed on his arms. Rashed on his legs and, I soon discovered, on his chest and belly. Most of all, rashed on his face, which was red and bumpy. “What’s wrong with me?” he exclaimed and burst out crying. I checked his breathing (it was okay), took him back to our rental house, and put him in the shower. With good scrubbing and an antihistamine, the rash dissipated.

After the Costa Rica experience, I asked Martin’s allergist—a mainstream doctor, not focused on ASD—to test Martin for a reaction to horses. The doctor agreed, though he had to order a special skin test. When it was finally available and administered, the test left no doubt: Martin’s forearm immediately swelled into a red bump. No more horses.

On that same Costa Rica trip (August 2016), we discovered Martin had become allergic to red meat.Sixteen months earlier, in February 2015, in South America, Martin was eating beef with roast potatoes when a red rash formed around his mouth.(That trip, however, he’d ridden horses with his cousins, no problem.) Still I didn’t realize that red meat, which he rarely ate, was the issue; of the Costa Rica trip, I wrote: “He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.” Subsequently I put the pieces together and stopped letting Martin eat beef—but it would be more time yet before I figured out that all red meats were problematic, not just beef. (That discovery, in a “bison incident,” is described here.)

This summer, in Costa Rica again, Martin’s day camp was having an activity in which the kids rode horses to a remote waterfall. I wondered: The allergy came on when Martin was already six (or seven? or eight?) years old. Does he still have it? These Johnny-come-lately allergies—do they stick around? I wanted Martin to be able to participate in the horseback-riding activity, and not to experience one more factor differentiating him from other kids.

So I acted recklessly. (Maybe?) I told the camp director that Martin is allergic to horses. I told her about Martin’s reaction two years earlier, also in Costa Rica. I said I was going to dress Martin in long sleeves, long pants, and high socks, and send him to camp. I asked her to let Martin give the activity a try and see what happened. I reminded her that Martin always carries antihistamine in his backpack, just in case.

Mid-morning, I received a message from the camp director. Martin had only been on the horse a few minutes when he got a terrible rash. She took him off the horse immediately and administered his antihistamine. The reaction was severe enough that she also took him directly to a shower to wash. Thankfully, he was better within a short time.

That’s that. Martin has become allergic to horses, possibly permanently, just as he has become allergic to cats and dogs and has become allergic to red meat.

I am, of course, back to pondering why Martin has developed allergies as he continues to heal. I still think the most likely explanation is that he had these allergies (with the possible exception of red meat, which may or may not be related to Lyme disease) all along, but previously his immune system was neither strong nor responsive enough to mount the proper response. Whereas allergies themselves represent flaws in immune function, perhaps one day Martin’s full recovery will mean the allergies dissipate along with the remaining vestiges of autism.

Today, let’s not dwell on the allergies, and what they might mean. Instead, let’s focus on this: According to the camp director in Costa Rica, Martin didn’t freak out, not even when he was covered in a rash and pulled away from the other kids. She said he was upset for a minute or two, then calmed down. Two weeks later, when the activity again was horseback riding, I offered Martin a choice: He could go to camp and play games or surf while the other kids rode (the director had offered this alternative), or he could take the day off and go to the beach with Uncle Eddie. Martin contemplated for a while, then chose to take the day off. It seemed like a reasonable choice, and it wasn’t a big deal.

Because now, not everything has to be a big deal.

2015

My last post reviewed 2014, which got me thinking about 2015.

New interventions are coming down the path, as always. Sitting in my home right now, as yet unpacked, is an ionic foot bath. On their way to us are two Himalayan salt lamps, for air purification and EMF reduction. Are these items just so much hype and bunk? Time to find out. I also ordered an essential oils diffuser. I’ve been applying frankincense and eucalyptus oil to the soles of Martin’s feet and the base of his neck, and witnessing more sharpness when I do. I’d like to see what will result if near his bed I diffuse those two oils, and whatever other oils I find to target his attention span.

I am hoping that 2015 will bring MRT to the greater New York area. I think Martin would be a good candidate for MRT. Unfortunately, because he attends school year-round, i.e., without a summer break, I have not been able to commit to bringing him for the required twelve weeks to any center currently conducting trials of MRT for ASD.

We’re returning in 2015 to some practitioners who helped Martin but fell away for whatever reason. At the beginning of 2013, we switched to a Connecticut biomed doctor when our original doctor moved her practice from Chicago (not too bad to fly there from New York) to California (heckuva long way). In two weeks, I’m taking Martin to California to see the original doctor, distance be damned. I’m figuring that a talented and intuitive doctor who has not seen Martin in more than two years can give us a realistic picture of what progress we’ve made, and what direction we should consider now. I also plan to seek a few sessions with the craniosacral therapist who, in past years, was able to tell me details about Martin’s health and body. I can’t point to any particular reason why we stopped seeing her, other than “too much on the plate.” It’s time to return.

As to me, Martin’s primary care-giver, I have three resolutions. Or maybe not “resolutions.” Publicly resolving to take action brings too much pressure. Let’s say this: I have three notions, and hopes of addressing them.

First, I want to do more thorough research and reading. Unless you are a fellow ASD-recovery parent, you may find this hard to believe, but—I think I do a subpar job when it comes to understanding the science behind Martin’s recovery. I’ve never made sufficient use of his genetic information, or insisted that his doctors do so. I have books I bought, and articles I printed, that I’ve barely picked up. I get so caught up in the everyday mechanics of recovery, the cooking and appointments and supplement orders and logging his health and behavior, that I fail to put aside for making sure I understand it all. Which is another way of saying I’ve been lazy when it comes to doing what I find most challenging.

Second, I want to help Martin understand more about why we do what we do. He knows about foods that “hurt his belly” or “keep him up at night.” As he gets older and his language skills continue to develop, I’d like to explain his health, and how our biomed protocol improves his health. The tricks will be finding a way to bring the explanations to Martin’s level right now, and saying it all without mentioning “autism.” Martin doesn’t know that word, and I wouldn’t care to have him learn it.

Third, I want to put some effort into my own health. I cook GAPS food for Martin, prepare dairy/fish meals for Adrian, and then, for my vegan self, grab whatever I can on the run. I don’t sleep enough. I work out too intensely, or not at all. In 2014 I suffered four major illnesses, one requiring the hospital. That’s got to change.

If 2014 was a banner year, 2015 shall be a confident year. Many underlying challenges are virtually gone, or fading fast. Martin sleeps. He talks. His digestion functions. He has few repetitive behaviors. He still perseverates, but at least he varies the topic. The work we have left to do—primarily socializing and maintaining attention/focus—is more nebulous, and its milestones less pronounced. When it comes to sleep or language, I can measure progress easily. When it comes to how Martin engages other kids, and how they treat him, I have less to chart. So I will have to keep faith, and remain confident that change is occurring, even if I grasp it only in hindsight.

P.S. I have a special announcement for long-time readers. Remember the cat chaos in my home? The hissing and bullying, the senior cats living in the basement? On the advice of a cat behaviorist, we’ve found a new home for the troublemaker-in-chief, George. He’s going to live in Northern California, with the mother of a close (human) friend of mine. He’ll be the only cat in a big house on a big yard, the empire of his dreams. And Martin and I, on our trip to visit the California doctor, will personally deliver George to his new home. Wish all three of us luck.

Autism Steals From Everyone

When I was pregnant with Martin, I was in the middle of completing my MFA in writing, and one of my instructors, himself a father, told me this: “You’ll see. When your kid is born, you cats will be just cats. You won’t adore them anymore.”

I’d heard stories of this phenomenon, of the mom who has a baby and then wants to chain the faithful dog outside, or decides that the chattering bird who kept her company all those years wasn’t actually talking. Parents who start a “real” family, only to reject the companions who were family. That wouldn’t be me. My cats had seen me though some tough times, and I intended to return the favor.

“You’re wrong,” I told the writing instructor, and proceeded to bet him a dinner that, six months after Martin was born, I would still be doting on the felines.

I won that bet. When Martin was born, as he grew, when we got the autism diagnosis, and even after we started the all-consuming process of biomed, our cats retained their stature. We have four of them—Levi, Freddie, Edith, and George—all rescued from the street or the pound. Under our protection, they’ve lived luxuriant lives, indoor-only, replete with toys and top-quality food, scratching posts and climbing furniture, cuddling on our bed at night.

Until this summer.

What happened, I still can’t figure out. At the time, I thought it started with Freddie. When we lived in the City, we had some problems with Freddie peeing outside his box. Freddie is a small cat, and nervous. Anything can set him off. We hadn’t had any issues with Freddie in the year since we moved to the suburbs. Then a few months ago, Freddie started peeing outside his box again. And not just a little bit. And not in only one spot, as when we lived in the City. Freddie decided to treat our whole house like a toilet: the bathrooms, the family room and dining room, the throw rugs, Martin’s bed.

Something had to be done. In consultation with the cats’ veterinarian, I experimented. Different kinds of litter. Moving the litter boxes around. Strategically positioning puppy-training pads in areas Freddie hit repeatedly. We made some progress. At least, more often than not Freddie hit a box or a pad, and clean-up was efficient.

Then Levi joined the party. His timing was a wonder. It was a weekday evening, Martin was sleeping, and I had just climbed into bed with Adrian to begin a conversation titled (in my head), “We’ve got to do more to get this Freddie problem under control,” when I heard liquid splashing in our bathroom. I cut the nascent conversation and sprinted to the bathroom to find Levi urinating all over a chair. Levi! Levi, who never in his eleven years had peed anywhere but a litter box! Levi, producing the most dastardly mess.

I swore. I dropped an F-bomb and chased Levi from the bathroom. By the time I had the mess cleaned up—originally, more than a decade ago, I brought the cats to my and Adrian’s relationship, so dealing with their, ahem, issues always seems to fall on my shoulders—Adrian was snoring. Our conversation was postposed until date-night dinner that weekend, by which time Levi had become Troublemaker No. 1. Unlike Freddie, Levi wasn’t just peeing. He was spraying, marking his territory by firing urine directly at walls, doors, furniture, and heating vents. You can clean from dawn till dusk. That smell sticks around.

“I have no idea what’s happened,” I said to Adrian at dinner that weekend. “I don’t know why they’re doing this to us. I think we’ve got to consider the vet’s suggestion, and let them go outside.”

Adrian looked like he couldn’t believe what I was saying. To some extent, neither could I. In the 20 years I’ve hosted cats in my home, I’ve been steadfastly against letting them go outside. To some extent, I was being pragmatic; I’ve lived inside Chicago, New Haven, Dallas, New York City, urban centers inhospitable to feline wandering. But my objection extended beyond simple pragmatism, to generalized affinity for animals. Because of cars, predators, and other dangers, cats allowed to wander have shorter lifespans. Plus, they kill. Inside, my cats kill moths, crickets, flies. Outside, songbirds and mice and squirrels and all sorts of higher orders come into the picture.

As I sat there talking to Adrian, in a restaurant, away (thank goodness) from the cats, I realized something: There is only so much pee I can tolerate. Martin still has trouble at night, and occasional daytime accidents. So I’ve dealt with six years of pee from him already. And there are litter boxes. With four cats, I’m cleaning litter boxes all the time. Now I had pee all over my house. Pee, pee, pee. I was done.

Ever since the Cats Gone Wild! show began, our veterinarian had been advising me to let the cats roam freely. “You don’t live in the city anymore,” she coaxed. “You have more than an acre of property. You live on a dead end with hardly any traffic. Cats allowed outdoors don’t mark inside. They just don’t.”

Adrian and I reached agreement quickly. For the first time since they came to our home, the cats would be allowed outside. I set about taking all responsible precautions, including rabies vaccinations (ugh, let’s not get into vaccinations again!) and flea pills. I asked friends who have outdoor cats, “How do you make sure they come back?” (“They know where the food is,” I was assured.) One Saturday, when we were hanging out on the back deck with friends, we opened the sliding glass doors and left them open. And that was that!

Or so I’d like so say. The truth is that nothing was solved. I came to realize that the originator of the pee problem was neither Freddie nor Levi, but our youngest cat, George. George woke up one morning and inexplicably decided he hated Levi and Freddie. I suppose I saw hints: Instead of four cats sleeping on our bed, there were three, with Georgie elsewhere, and there were hisses and swipes, scratches on Freddie’s nose.

In the face of George’s wrath, Freddie cracked. He started peeing, I think, out of sheer nervousness. Levi started marking in order to warn George off further aggression. Once the cats were outdoors, their true colors became increasingly evident. George strutted around the yard, chasing Levi clear off the property. Freddie kept peeing, too scared to set paw out the door. Levi increased his marking, spraying every ingress Georgie might access, spraying the back patio when he had the chance. When they were all inside, fights broke out.

It was chaos. It was a disaster. I was losing sleep. Imagine this: I have a child with autism, yet what kept me up at night was the fear of who might be peeing where. I woke repeatedly, roaming the house in darkness, looking for signs of trouble.

I’ll skip to where we stand now. As of this writing, Levi and Freddie are living in the basement, and have been for more than a month. Tellingly, they both stopped urinating outside the little box almost as soon as it became clear that they were away from George. And don’t worry too much for them. We have a gigantic unfinished basement. I’ve hauled towels, pillows, and boxes down there to create soft and safe spaces. There are crickets to kill, and—ugh—last week I cleaned up a decapitated mouse. There are ceiling-level windows, under which I’ve placed “cat furniture” so the boys can climb and look out. I moved a chair and table into a quasi-office configuration so that I can spend and hour or two with them each day, working. I’m sitting there right now.

Upstairs, George and Edith are residing, without incident, allowed outside as they want. (I can’t let Levi go outside, because he and George fight. Freddie still lacks wanderlust entirely.)

For now, the problem is solved. The house is clean and fresh. I’m sleeping. Nevertheless, I don’t want Levi and Freddie to live in the basement forever. They don’t deserve it. George started the whole thing. So we’ve come down to this: I’m hiring a cat behaviorist to try to get to the bottom of George’s attitude, of why he started hating Levi and Freddie after years of peaceful coexistence. If the behaviorist can’t help, we will begin trying to re-home Georgie. I will be heartbroken, and I still don’t know if I can do it, but that is the direction we will move.

Why, you might be ask, are you reading all this on an autism recovery blog? What does this have to do with Martin’s journey?

With Martin’s journey, maybe not that much. But it has a lot to do with my journey as I shepherd Martin. There has been too much on my shoulders. I’ve been cleaning and cooking and researching and conducting therapies and finding schools and trying to keep a household together for too long. Too long. These past few months, including two vacations when I took some break from the madness, have prompted reevaluation, as I wrote last week. If in past years I would have indulged the cats their little spats, if I would have lost the sleep to hose down throw rugs at 2:00 a.m., no more. I have autism to deal with, and somewhere under that burden, I have my own life to forge. My cats will always have access to safe and warm spaces, to healthcare, to food, and to company.

Monopolization of my time, or the privilege of ruining my home—those they may have lost. Because autism steals from everyone.

One more thing—I know that, with what I write in this blog, I open myself to ridicule. Deservedly so. As I’ve said before: Homemade probiotic catsup? Camel milk? Spending hours in airport security so supplements don’t get X-rayed? Who does that? And right now you’re probably thinking: A cat behaviorist? Seriously? Who does that?

Think about this: Eleven years ago, when Adrian and I adopted Levi as a kitten, he came with a case of ringworm so pernicious that, after months of unsuccessful treatment, we were forced to take him to a feline dermatologist. Honestly. A feline dermatologist.

So all things considered, Adrian and I might just be getting slightly less crazy.

My New Relationship with Food, and the Kitchen-Jar Rule

Martin’s dietary needs are leading me to a new relationship with food.

That’s a whopper (excuse the pun?) of a cliché, right?—a “new relationship with food.” Sorry. I’m not coming up with a better way to phrase this phenomenon.

I’m not an unhealthy eater. I wasn’t an unhealthy eater before this chapter, and I’m not now. I’m vegan. I watch my fats and proteins and vitamins. I love to cook and have always done plenty of it, whenever my schedule permits.

Yet until we undertook biomedical intervention and radicalized Martin’s diet, I put relatively little thought into additives, colors, and processed food versus natural. For example, I prefer to make hummus at home, because I can control the amount of tahini (just a dollop) that I add as opposed to lemon juice (plenty) and garlic (vampires refuse even to enter my neighborhood). But from a nutrition perspective, I gave little weight to the difference between (1) blender-whirring raw materials into hummus and (2) buying hummus preserved with potassium sorbate. (Wikipedia: “Potassium sorbate is the potassium salt of sorbic acid, chemical formula C6H7KO2. Its primary use is as a food preservative (E number 202).”) Nor did I consider the benefits of fresh-squeezed lemon juice over made-from-concentrate lemon juice purchased in a green-tinted plastic bottle that also contains sodium benzoate, sodium metabisulfite, and sodium sulfite.

Martin’s diet, along with its other restrictions, excludes additives and preservatives—or as I like to call them, non-food items in food. That means just about any processed food is off-limits. Even when it comes to meat: The meat we purchase must come from animals who ate unprocessed (minimally processed, at most) grains grown without pesticides.

The fact that Martin, who is so sensitive, has responded so well to the removal of non-food items from his diet got me questioning whether fresher and more natural foods would not benefit the whole family. Neither Adrian nor I suffer neurological impairment or, to my knowledge, complications with digestion or nutrient absorption. Therefore, we probably would not experience dramatic changes like Martin’s. On the other hand, what if reducing our intake of non-food items makes us sleep (a little) better, and feel (a little) more energetic, and concentrate (a little) steadier, and possess (a little) sunnier outlook? Might we not end up (a lot) healthier?

Now that I’m no longer employed, I’ve been implementing this like crazy. No more casual eating on the run. On weekday mornings, Adrian and Martin get up at 7:00 a.m. and leave home together at 8:05 a.m. to meet the school bus, after which Adrian heads to work. I, on the other hand, rise at 5:45 a.m. I cook the boys’ breakfasts; organize Martin’s supplements; prepare Martin’s lunch, beverage, and school bag; and also assemble lunch, one protein snack, and two fiber snacks for Adrian to carry to the office. (If the 5:45 a.m. thing is killing me, then at 8:06 a.m. I hop back into bed for an hour.) During the week, no food enters my guys that I have not made myself, except for Martin’s snacks and crackers baked by my mother.

My new standard for the grocery store is the “jar in my kitchen” rule. Mostly I buy fresh vegetables and bulk dried beans, i.e., unpackaged raw ingredients. (No meat or eggs at the grocery store; those I find at the farms or farmers’ markets.) As to anything I want that comes in a package, I search the label for ingredients I could not imagine keeping in a jar in my kitchen. The more ingredients I would not keep in a jar in my kitchen, the less willing I am to purchase. For example, this week I picked up the following packaged items:

•            Shim’on Ariche harissa. Ingredients: hot red peppers, garlic, water, salt. Unfortunately not organic. Still, all kitchen-jar approved.

•            Imagine creamy tomato soup. Ingredients: filtered water, organic tomatoes, organic onions, organic rice syrup, organic celery, sea salt, organic expeller pressed canola oil and/or safflower oil and/or sunflower oil, organic spices, organic garlic powder. The reference to unspecified spices gives me some pause. Homemade tomato soup would be preferable, but alas, a day has only so many hours for the kitchen. Overall, the Imagine soup is kitchen-jar approved

•            Orgran toasted buckwheat crispibread. Ingredients: buckwheat, rice, salt. Easy call.

•            NaSoya Nayonaise (vegan mayonnaise). Ingredients: soymilk, soybean and/or sunflour oil, cane syrup, vinegar, salt, mustard, apple cider vinegar, lemon juice, guar gum, xanthan gum, and sodium alginate. Caution! I was okay with everything until guar gum, xanthan gum, and sodium alginate. Not kitchen-jar approved. But in the end, I did buy the Nayonaise. I wanted it for a creamy salad, i.e., as a minor ingredient in a dish headlined by red bell pepper, pear, apple, daikon, onion, carrot, celery, and turnip. Not perfect, but some allowances must be made for tastiness.

My kitchen-jar rule is made easier by some unusual ingredients in my kitchen. Rice syrup, for instance. Though it’s not approved for Martin, it makes a gentle sweetener for my grown-up baked goods. Or lecithin. Lecithin pops up in many packaged food, and as it so happens, I do keep a jar of lecithin in my kitchen. It’s Love Raw Foods sunflower lecithin, a supplement we use for Martin, from Blue Mountain Organics.

In summary, I have Martin eating 98% fresh, 100% natural, and 99% organic. For me and Adrian, probably 80% fresh, 99% natural, and 80% organic (taking into account our weekend tendency to eat at restaurants).

There’s still the issue of our four cats. Currently, they eat Nature’s Variety canned food and dry food. I wish I could do better for them. When I was in graduate school, and had grad-student amounts of time on my hands, I made cat food at home. William the cat, who has long since died, was particularly fond of a garbanzo-based concoction I used to make with Harbingers of a New Age supplements.

Maybe someday I’ll manage a triumphant return to homemade cat food. Maybe when Martin is recovered.

Until then, alas, I repeat: A day has only so many hours for the kitchen.

George the cat, Martin’s best friend. Actually, the only of our four cats who tolerates Martin.