Just Had to Get That Out

Posted on August 24, 2016 by findingmykid

Some themes get old on Finding My Kid. If you’re a regular reader, you can probably name a few: sleeplessness, detox and die-off, food, the New York Rangers. These are the light motifs that underlie our journey. They are the stuff of my day-to-day.

I have to add another theme to the list: skepticism and rebuke. At least, skepticism and rebuke as pertain to Heilkunst. Recall that we started Heilkunst late in 2014, and that it’s a method of sequential homeopathy designed to help the immune system clear various insults it has suffered. I went into the process with doubts. Then the first clear Martin received (for coxsackie) made him puke and also produced a light coxsackie rash, and I started to see the light. Later, when we cleared the H1N1 and MMR vaccines, plus antibiotics we’d previously used to treat SIBO, Martin’s reactions and improvements were so dramatic that I became “non-skeptical.”

At least for a time. But there were no dramatic improvements for a while, and I grew complacent, and complacency, evidently, reopens the door to doubt. I asked myself: Is Martin still benefiting from Heilkunst?

If you happen to write fiction, you’re probably familiar with Chekov’s gun, which is the rule that a story (or play, or scene, or essay) should be free from extraneous detail. I poked around and found that the gun is usually attributed to a letter Chekov wrote in 1889 to playwright Aleksandr Semenovich Lazarev: “One must not put a loaded rifle on the stage if no one is thinking of firing it.”

Writing rules are meant to be broken, but I will respect the gun—which is to say: I raise my Heilkunst doubts because I intend to erase those doubts.

It isn’t supposed to be all about me. Is it?

To this day, I carry guilt about Martin’s birth. I won’t describe all the circumstances again, except this brief enumeration: In the 42nd week, against my better judgment, I allowed induction by Pitocin, which led to Martin getting “stuck” sideways, which led to continual drops in his heart rate, which led to an unplanned C-section, which upset me so much that I got a fever, which (“maternal fever”) caused the hospital to place my healthy baby in the NICU and pump him with intravenous antibiotics, in an incubator away from skin-to-skin contact.

Here’s a portion of the story I haven’t shared before on this blog: After Martin was taken, I was wheeled into a “recovery room” and told to sleep. Even then, my instinct told me that something was wrong. I needed to get to my child, and so, fresh off a surgical table, I pulled myself from the hospital bed and tried to find Martin. I made it only a few paces before blood collected around my feet and I slipped. A nurse entered and found me on the floor, a mess, trying to rise again. The nurse insisted that I get back into bed. I said, “No. My child. I have to get to my child.” Finally, I agreed to lie on the bed on the condition that she find Adrian: “Get my husband! Go get my husband!”

She left the room. Somehow, Adrian and my mother appeared in the recovery room with Starbucks drinks. (It was early morning.) Though even I didn’t know why, the sight of Adrian and my mother smiling with Starbucks drinks in their hands enraged me. When our child needed us, they’d gone to Starbucks. I told Adrian to go to Martin, to find Martin and protect him. Adrian said Martin was fine, that the doctors were taking care of him, and that I needed to go to sleep. I said Martin needed to be with me, and that Adrian needed to find Martin immediately.

I don’t know what happened after then. I have no more recollection. My next memory is being wheeled into my own hospital room. I may have fallen asleep, or fainted, or become delirious (if I wasn’t already). Or maybe I’ve blocked the memory. In any event, what remained was the impression that Martin was in danger, and I was at fault, and Adrian was at fault, and nonsensically even my mother was at fault. Three years later, when I began to understand what antibiotics do to the gut biome, and the gut biome’s connection to autism, I wanted nothing more than return to the day before Martin’s birth and refuse the Pitocin, and refuse to surrender him to the NICU.

Please don’t chime in and point out that my guilt is unjustified, or that it is ridiculous to be angry with Adrian and my mother for getting Starbucks. I know that most first-time parents have neither the foresight nor the wherewithal to realize how destructive our medical birth culture can be. I know all that. Yet, when Martin was five, I attended a wedding and was seated next to the bride’s brother-in-law, who was holding a six-week-old baby and also full of bravado. “They tried to put her in the NICU,” he declared, after describing some minor complications. “They said they’d call family services if I didn’t let her go. So I said, ‘Go ahead and call family services. My lawyer will be here long before they will.’ They gave up and left us alone. Ha! I know my rights!” His performance upset me enough that Adrian and I had to leave the wedding early.

Two months ago, the envelopes with Martin’s latest two Heilkunst clears arrived by mail. When I had talked with the homeopath, he mentioned which clears were coming, but I hadn’t paid much attention and wasn’t thinking about that when I tore open the big envelope to extract the smaller envelopes with remedies.

As soon as I touched the remedy envelopes, my hands began to shake and I started crying. I had to catch my breath. Unsure what was happening, I set the whole packet down and took a minute to compose myself. Sometimes I experience generalized feelings of unease and have to pause to remember what’s got me anxious—an unaccomplished work project, an upset friend, a fight over a bill, whatever. The feeling that overtook me when I was opening the remedies, however, overran generalized unease or emptiness. It was an immediate affront, and I couldn’t connect it to anything happening in my life.

At length, confused, I retrieved the first remedy envelope and noticed what was inside: the first of several clears related to Martin’s birth trauma and NICU experience.

I have no explanation for this event other than to believe whatever energy was in those envelopes—homeopathy is energetic medicine—provoked a reaction in me, from the spot of my regret.

Just had to get that out.

Along with the clears every few weeks, Martin also takes daily Heilkunst drops. One dropper helps with Lyme disease, and the other is a drainage dropper that helps him move stuff through his system generally.

About a month ago, his drainage dropper became contaminated and I had to order a new one. I could have replaced the drainage dropper with a “paper remedy,” which is where you write the particular remedy on a piece of paper and keep it near the recipient. Believe it or not, however, some aspects of homeopathy, like paper remedies, still seem too far out there even for me. So I ordered a new drainage dropper, which had to be sent from Canada and then reconstituted upon receipt, and a lot was going on, and yadda yadda yadda, Martin went a couple few without his drainage dropper.

Martin’s final week without the drainage dropper was dreadful. He was defiant, resistant, downright crabby. His teachers reported silly and unfocused behavior. His personal trainer said he seemed “out of it.” He demanded constant attention. He couldn’t fall asleep. I had an extra glass or two of wine. (Food for thought on that topic, see this opinion piece.) I connected none of this to homeopathy.

Sunday, the end of that week, was no exception. Martin vacillated between wanting to accompany me to church and wanting to go with Adrian to the gym. Actually, he spent more time complaining about both choices. He wanted to stay home and use his iPad. He wanted to stay home alone. He complained about lunch. He complained when Adrian “made” him go swimming. He whined so much about the notion of going out to dinner that we decided to eat on our back deck instead. (We don’t usually yield to whining. A great blizzard can snap even the most stalwart bough.)

Meanwhile, I finally got my act together and prepared the new drainage dropper, which had arrived at least a week earlier and sat on the counter. Mid-afternoon, Martin had his first drainage drop in several weeks.

He ate dinner without incident, other than grumbling about what I’d prepared. He was two bites into dessert (chocolate quinoa cake, leftover from entertaining Saturday guests) when he said, “My tummy hurts.”

“Why don’t you go to the bathroom?” I asked.

He went in the house.

He didn’t return.

Five minutes later I found him sitting on the toilet, hunched over. “My tummy hurts,” he said.

“Did you go to the bathroom?” I asked.

“I can’t.”

“Let’s see if a warm bath helps.” I ran a warm bath with Epsom salt and baking soda and helped Martin into the tub.

I’m going to yadda yadda some more details here. I’ll report the highlights: a bathtub of water, Epsom salt, baking soda, and puke; Adrian yelling, “Get him to the hardwood!” as Martin started to puke on the family room rug; me grabbing the countertop compost bin to catch more puke.

When Pukefest concluded, Martin said simply, “I need to go to bed.” Within two minutes, he was asleep, at least an hour earlier than usual.

When it comes to Martin, I’m prone to overreacting. Once the house had been scrubbed clean, I proceeded directly to Google to review the signs of delayed drowning, because Martin had spent the afternoon in the pool and now was unwell. Excessive tiredness was on the list. Vomiting, maybe. Martin had none of the other symptoms of delayed drowning, and he’d identified a tummy ache, not any pain in his lungs or chest. None of that stopped me from waking every hour during the night to check on Martin to make sure he was breathing well and not foaming at the mouth. And so I can tell you this: That night, Martin slept. For thirteen hours he barely stirred.

When he woke, at 8:00 Monday morning, Martin was utterly buoyant. He bounded into the kitchen and said, “It’s already 8:00! I slept late!” I replied, “That’s no problem. I will drive you to school after you eat breakfast.” (Martin attends summer school, for which I usually wake him by 6:45.) I steeled myself for protest; Martin will exploit any excuse to get out of school. The protest wasn’t forthcoming. Instead, he said, “Sounds good! I’m going to get dressed.” For breakfast, he ate eggs and veggies in a tortilla. When I picked him up from school, his teachers said he’d had a “fantastic” day. His personal trainer reported “big improvement.” He ate dinner without a whimper. He went to bed and slept soundly again.

Coincidence? Or just undesirable stuff—who knows what?—building up without his dropper?

Once upon a time, I would have said the former.

P.S. According to Wikipedia, Aleksandr Semenovich Lazarev was a pseudonym of A.S. Gruzinsky. Other than that, I can’t find out much about him. Poor Lazarev/Gruzinsky appears to be remembered only for Chekov’s gun.

Martin prepares to take a swim lesson.

Of Snot and Spots

Posted on August 4, 2015 by findingmykid

Overcoming autism is like trying to escape an octopus’s clutch: Just when you feel free from one tentacle, another swoops in to take hold.

Martin had a terrific spring, and his digestion and health seem better than ever. Yeast has been under control for a year. Bowel movements are formed and firm. He sleeps. His height and weight are right where they’re supposed to be. His once-distended belly lies flat. We’ve wrested him from several tentacles.

Enter—allergies. At least, I think “allergies.”

Until recently, Martin has never had overt trouble with allergies. The first sign of a change was a few months ago, at a diner. (Martin ordered an Angus beef patty, no bun, and steamed broccoli. The catsup he ate was not organic. It was full of crap.) Midway through the meal, Martin started sneezing and rubbing his eyes. His face became red, his nose ran, his eyes puffed and watered. I had no idea what was going on. I did my best to dab at his eyes with a damp napkin and make him comfortable. The reaction faded as we drove home, 20 minutes later.

A couple months passed without another incident. Then, in July, he had three such reactions in one week: two when he got home after school (Martin attends summer school), and one over breakfast. I don’t know if something in our house might be bothering him, something that coincidentally was also at the diner. I did notice that, with all three reactions at home, he was drinking camel milk when the trouble started. Accordingly, I’ve suspended camel milk until we figure this out. No more reactions of that type—runny nose, puffy eyes—have occurred.

Meanwhile, however, red spots have appeared on Martin’s left temple. They showed up two or three weeks ago, faded, and reappeared more prominently this weekend. And they’re breeding: When the spots emerged a few weeks ago, they were four. This past weekend, they were seven on his face and one on the back of his neck. The spots are neither raised nor itchy. They are not bug bites.

Terrible photography. Sorry. He didn’t want to be still.

So what the hell are they? Allergies? To what? Are they the result of a Heilkunst clear? Our last clear was PCV7. The skin is the body’s largest drainage organ. Or are the spots from clearing something else? We’re working on Martin’s biofilm now, plus the possibility (awaiting test results) of chronic Lyme, both of which involve antimicrobial drops. Is his body responding with spotty face?

Also happening nowadays: Martin’s ears hurt, and he’s coughing at night. His emotional regulation is terrible. He seems out of it. Where do those facts fit in the puzzle?

I’ve scheduled new allergy testing with Martin’s pediatrician, and I’m corresponding with our other practitioners, trying to figure this out, which leads to the biggest mystery of all: When exactly did I become qualified to make sense of such things?

I’ve never wanted to fight an octopus.

Those Doubts Are Gone. From a Mainstream Perspective, I Get Crazier by the Day

Posted on June 26, 2015 by findingmykid

Remember my doubts about Heilkunst homeopathy?

Heilkunst is about supporting the body’s natural healing power, allowing its own return to health. I had to go through the dreadful process of enumerating, in reverse chronological order, the many insults to Martin’s immune system, from medications and illnesses to vaccines to home remodeling while I was pregnant. For eight months we’ve done a “clear” every two or three weeks, working backward through what might be hampering Martin’s recovery.

Immediately after we began the first clear, which addressed coxsackie, Martin vomited and woke the next morning with a mild coxsackie-like rash on his hands. Since then we’ve seen what appear to be “healing reactions” of all sorts. Itchy neck. Inner-ear swelling. Tired allergy eyes. More vomiting. ROOS. Ugh, ROOS.

At the same time, Martin has been getting better and better. Seriously, he’s having a homerun 2015. I’ve been “reasonably convinced” the Heilkunst is doing what it’s supposed to.

Time to scratch the “reasonably.”

Our last three clears have been MMR, the H1N1 vaccine, and antibiotics we used when addressing SIBO. The antibiotics actually should have been addressed much earlier, in terms of chronological order; I realized only recently, from reading comments in an on-line group, that antibiotics need to be cleared.

I had a hunch that H1N1 clear would be a tough one. The H1N1 vaccine—why on earth did I fall prey to the unnecessary frenzy over that illness?—was the only injection from which I saw a noticeable difference in Martin, beyond the fever-crying-and-blues we are supposed to accept in a recently vaccinated child. He received the H1N1 shot in November 2009, when he was almost 17 months old. (According to his medical records, a “second” H1N1 shot was administered in January 2010. I have no recollection of that.) The shot was not a bad one, in terms of Martin crying or acting out. Instead, he became very quiet and withdrawn, and then, the same afternoon, I noticed him engaging in repetitive behaviors: moving toddler chairs into formation, stacking them, moving them. It was the first time I’d ever noticed such behaviors. Do I know that the onset of repetitive behaviors was tied to the H1N1 vaccine, instead of coincidental? No. But the timing raises red flags. Plants a whole row of red flags.

So I went into Martin’s Heilkunst H1N1 clear with trepidation. The clear involves three wafers given over three days, and then a two-or-three-week waiting period while Martin’s system works through the effects of the H1N1 shot.

As to what happened, here is the update I sent to Martin’s Heilkunst practitioner following the H1N1 and MMR clears:

With the H1N1, Martin was crabby for more than a week. He also had trouble sleeping and reverted to some behaviors we haven’t seen in a long time, such as uncontrollable perseveration and also verbal stimming (he says “goo-HEN-duh-may” repeatedly, and tries to get others to say it also, by asking, “What did I just say?” or, “Is ‘goo-HEN-duh-may’ a word?”). One afternoon he was super crabby and tired, and at dinner he said abruptly, “Mommy, I need to throw up.” (I feel bad: I didn’t believe him, because he frequently says that when he just doesn’t want to eat, doesn’t want to go to school, &c.) Then he vomited, twice, all over the dinner table and floor. After I got him cleaned up in a bath, he seemed to be feeling much, much better. He asked if he could have dessert even though he didn’t finish dinner, and then he went to bed and slept more peacefully. No trouble after that.

I waited another week and then did the MMR. Martin did not get as crabby, but one night after I bathed him, I noticed a bright red, raised rash on one half of his backside. By morning the rash was gone. Also, one day later he was covering his ears and saying they hurt. I put some Hyland’s earache drops in them, which seemed to help.

Overall, Martin is doing very well right now, with a big increase in conversation skills and some in attention. Socialization remains tough.

I should add that the rash I saw on Martin while we were clearing MMR was a mild measles-like rash. I know, because I had measles when I was 12. (I lived in a semi-rural area where, as far as I know, vaccination rates were near 100%. I caught measles despite being initially vaccinated, and later hit with a booster shot. I’m resisting the urge to make this post about vaccines.) In regard to looking like measles, Martin’s rash was clear and distinct.

Let’s agree on this: I don’t have my doubts about Heilkunst anymore. These wafers are doing something.

Let’s follow up with this: I don’t know how Heilkunst is working, or exactly what these wafers are up to. I know that the principle is “energy medicine.” Each wafer delivers a minimized, harmless form of what insulted the immune system, to help the body recognize and expel the toxin. But how does the wafer acquire that energy? At AutismOne, out of lingering curiosity, I crashed the Homeopathy Center of Houston panel discussion and asked questions. We don’t use the Homeopathy Center of Houston, buy hey, same idea as Heilkunst, right? Or close? The lovely ladies of Houston explained about dilution and formulas and administration and many other procedures, and my little brain left the room as uncertain as ever. I may be violating my own policy of comprehending any treatment before we begin; in the case of homeopathy, I consulted as many parents as I could find and also searched online for reports of negative or adverse reactions to sequential homeopathy. Having found nothing substantial or substantiated, I proceeded.

My online searches did yield studies (and straight-up arguments) concluding that homeopathy in general is bunk, just so much ineffective snake oil peddled at high prices. I took those accusations under advisement.

And now I feel comfortable saying: They’re wrong.

ROOS

Posted on April 30, 2015 by findingmykid

ROOS! Doesn’t that sound like a European soccer star, or maybe an adorable cartoon character?

Yesterday sucked. Martin engaged in behaviors we haven’t seen in months, or even years. He was exhausted. He had been chatting incessantly in bed Tuesday night, and cracking himself up, and he didn’t get to sleep until after 10:00 pm, so yesterday morning I had to drag him from bed. (On a proper night, he’s asleep by 8:00 pm.) Getting breakfast into him was a struggle. When his head wasn’t half on his plate and half on his placemat, he still forewent eating in order to whine, “I have to throw up. I can’t go to school, because I’m so sick.” (He didn’t have to, and he wasn’t.)

After school, the situation only got worse. Every suggestion I made was met with, “No! No, no, no, no, no.” He had a meltdown when Neil Young came on the radio singing “Ohio.” I can’t really identify the genesis of the meltdown; it seemed to be some combination of the song being a live version, my insisting on listening to the whole thing, and Neil Young not being available for a concert this weekend in the New York City area. In any event, Martin subsequently said he didn’t want to hear “Jungle Boogie,” asked me to sample every station for a better choice, decided that actually “Jungle Boogie” was what he wanted to hear, and had a fresh meltdown because the song had ended while we were sampling the other stations.

His homework, which usually gets done in less than 10 minutes, took more than 45 minutes and still wasn’t complete when he went to bed. He cried. He said that he couldn’t do the addition problems and needed my help. (He could do them, and he didn’t need help.) He refused to eat dinner unless I spooned it into his mouth. And he talked. Holy cow, did he talk. He talked non-stop, perseverating on tableware and street signs. Once, I regret, I exclaimed, “Martin, please. Please just stop talking for a minute.” He shouted, “No talking? No talking! Mommy, no talking?” and started to cry again.

Adrian is traveling, so Martin and I were alone. Martin decided that he could not be more than a few feet from me, and that I had to respond to everything he said. Everything.

Sound like the kid I’ve been blogging about lately?

I didn’t think so.

ROOS is a term I’ve heard some parents toss around, since I started doing Heilkunst homeopathy with Martin. As I understand homeopathy (when it comes to Heilkunst, I’m still a newbie), we administer teeny-tiny doses of what injured the immune system, or even just teeny-tiny doses of the energy of what injured the immune system, in order to help the body rid itself of the insult. So if the particular insult to be addressed is a bout of coxsackie, we give the participant some of that energy, in the hopes that his immune system will say, “Hey, what is that? I want that out. I want all that out,” in a way that it couldn’t manage when overwhelmed by the original insult.

As part of this process, while the body is working to clear the original insult, some of the symptoms that accompanied that insult. Hence: ROOS, or Return Of Old Symptoms. For the past week or two, Martin has been working to clear the H1N1 vaccine. If the Heilkunst stuff is working—and I think it is—then that H1N1 injection Martin got in late 2009 had something to do with the development of perseveration and overall discomfort. Now let me add something amazing: This seems to be the most difficult clear we’ve had since starting Heilkunst, and the H1N1 vaccine is the only injection that I ever correlated directly with the development of Martin’s autism. Seriously. Almost immediately after he received the H1N1 shot, I noticed Martin, for the first time, start picking up little chairs and setting them in patterns. I didn’t know then that Martin had autism; six more months would pass before we began to realize, and so at the time I just thought, oh, that’s odd, and chalked it up to Martin having an engineer’s mind, an assumption bolstered when he soon developed a fascination with the upright vacuum cleaner. Fast-forward five-and-a-half years. Poor little guy is trying to purge that weird H1N1 injection, and whatever nastiness lurked within its ingredients.

I finally got Martin into bed around 7:40 last night. I tried to read him a book, about the importance of telling the truth (that’s been an issue lately), but it was slow-going. Every line I read sent Martin on a tangent. Bears in the story? “Mommy, are these my stuffed bears? Mommy, what are their names?” A soccer ball? “Mommy, do I play soccer? Mommy, at the JCC is there a sign that says, ‘Gymnasium’?” A store? “Mommy, at the store, do they have plates and forks and knives? Why?”

Fortunately, he fell asleep promptly. I decided to cut my losses on the day. I cancelled a 9:00 pm business call instead cleaned the kitchen—which I find relaxing; don’t judge!—while engaging in hockey-watching therapy. Tampa Bay and Detroit were playing Game 7 of their first-round series. I don’t care for either team, other than a preference for Detroit because it’s an Original Six team and located in a climate appropriate for playing ice hockey. On the other hand, Brian Boyle and Ryan Callahan, former Rangers whom I still love, both play for Tampa Bay now, and I was happy to see a victory for them.

I went to bed thinking about Rangers’ game coming up tonight, and imagining that ROOS indeed could be just an adorable cartoon character.

Year 2014 in Review

Posted on January 15, 2015 by findingmykid

A year ago, I woke up on New Year’s morning with the conviction that 2014 would be a banner year in Martin’s recovery.

It’s time for a look back at 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year’s 2014.

We started several interventions to which, for a change, Martin plainly seemed to respond. (I write “for a change” because these were some of the few times when I was able to isolate particular interventions that helped. More often, it’s just something in “the whole package.”) When I posted in late July about five treatments that were “working now,” I also posted my frustration in jumping to conclusions based on initial positive results. I’m going to report now that at least two of those five “what’s working now” treatments, six months later, still are kicking autism’s butt: camel milk and Candex. Martin’s language took off immediately following the introduction of camel milk, and it hasn’t stopped since. Did you Tuesday’s post about the conversationalist? How cool was that? As for the Candex, Martin still has yeast flares. (I’ve come to accept that candida overgrowth may be a battle we fight for many years. Therein may lie our war.) Since we started using Candex, however, those flares have been milder and of shorter duration. They’ve been manageable.

Martin with his cousin Mandy in the snow, February 2014.

And the other three “working now” treatments, the GAPS diet, Enhansa™, and MitoSpectra? We are still on all three. I modified the GAPS diet by adding quinoa and reducing Martin’s meat consumption to one meal per day. (The reduction of meat isn’t particularly a “modification,” I suppose, though it felt that way.) I think Martin’s gut health is better than ever, though I wish he weren’t still prone to yeast flares. As to Enhansa, Martin’s chronic inflammation appears to have eased; I can’t say whether the Enhansa is responsible, or general improvement in gut health. I may stop the Enhansa, as an experiment, and see what happens. I plan to keep the MitoSpectra, for the time being. I reduced Martin’s dosage when a blood test revealed high levels of carnatine, and I feel like I could be doing more for his mitochondrial functioning (hence the quinoa). I’m keeping the MitoSpectra because I haven’t yet discovered that next best thing.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

In the second half of the year, after my “What’s Working Now” post, we started vision(-ish) therapy with Dr. Deborah Zelinsky; Heilkunst homeopathy with Rudi Verspoor; and a weekly facilitated social group with local kids. So far, I give all three a big thumbs up. We are in another period when “things are going well” but I’m not totally sure why. I may be observing a slight uptick in Martin’s eye contact and attention span. I’ll give that development to Dr. Zelinsky. Martin had a fever and apparent healing reaction over the Christmas break. That goes to the Heilkunst. As for the social group, that’s a confidence-builder. Martin is happy to have friends of his own. Last week, for the first time, he asked to bring a game that everyone could play—the lovely wildlife bingo set his uncle Eddie gave him.

Martin rock climbing at a birthday party, July 2014.

Did I make mistakes in 2014? Of course I did. I think the straight-up GAPS diet had too few carbs to meet Martin’s mitochondrial needs. I know there is debate on this point. For my child, I should have known; way back in 2011, when we first went grain-free, Martin showed signs of mild ketoacidosis, and we had to add a few gluten-free grains back in. This time around, I should have guessed that he would need more carbs than GAPS allows.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

I rushed treatments. The mother who launched our biomedical journey cautioned me against the urge to do everything at once. Nevertheless, when I find an intervention that excites me, I might move too quickly. Even today, four years into Martin’s recovery, I’m prone to that amateur mistake. Other times, I just fail to pay attention and mistakenly start two treatments together. C’est la vie.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Despite my tendency to rush, though, I think honestly I can peg 2014 as the year when I internalized “marathon not sprint.” Sure, for years now I’ve parroted the mantra. Autism recovery is a marathon, not a sprint. Autism recovery is a marathon, not a sprint. But what kind of marathon did I really envision? In my “banner year” post, last January, I wrote, “I now understand ‘the long haul,’” and “I no longer fear that some mythical window will close while Martin is five . . ., or seven, or any age.” Even after I wrote that, however, the notions took some time to sink in. It wasn’t until November, when I wrote the “Journey” post, that I finally abandoned the idea that this process will have an end date. Striving for better health may well be a perennial task, one that Martin needs to continue even after he becomes responsible for his own care. Autism recovery is not a sprint. It isn’t even a marathon. Autism recovery is a lifestyle.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Behavior-wise, in 2014 Martin took new interest in socializing with other kids. Although he still isolates himself when he becomes overwhelmed, for the most part he wants to be near his friends, even if just to play side-by-side on iPads. Late in the year, Martin also (finally) made progress on nighttime potty training. He wakes now when he needs the potty, and yells for me. “Thanks, kid.” Language-wise, in 2014—well, wow. Martin has been asking “why” questions (like, gazillions of why questions) for a long time now; in 2014, he started answering them, coherently. He’s become conversational, staying on point for multiple exchanges. He can talk on the phone. This afternoon he’s going to call Uncle Eddie and wish him happy birthday! And the perseveration has decreased. Did I mention that the perseveration has decreased? Yeah, the perseveration has decreased. Such a relief.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year’s 2015.

I am pleased to conclude that 2014 was a banner year in Martin’s recovery. All signs point to significant improvement in health, and corresponding changes in behavior.

May it be one banner year among many.

TWIFU

Posted on November 8, 2014 by findingmykid

TIFU. Know what it means? Click here (at your own peril) if you don’t.

Now take the T (“today”) and substitute TW (“this week”), because the events I’m about to describe happened on Monday.

In yesterday’s post I talked about starting Heilkunst. Martin’s first two clears arrived last week. I waited to start them, because I hadn’t had time to peruse the instructions for the clears, or to revise Martin’s daily supplementation sheets to include the clears and the accompanying drainage formula. Monday I had the time, got everything prepared, and decided to start Martin’s first clear.

By Monday we also had been waiting more than a week, since our visit to Dr. Zelinsky, for Martin’s new glasses to arrive. Martin, with characteristic precision and fierceness, had said he wanted his glasses to arrive “on Saturday, November 1 and no other day!” They didn’t. So when the glasses finally appeared on Monday, November 3, I was eager to present them to Martin and let him start wearing them.

Here’s what happened after the school bus dropped Martin off Monday afternoon:

3:50 pm. Martin put on glasses for the first time, agreed to wear them generally.

3:50-4:20 pm. Martin played, read, and drew pictures, wearing glasses. He took his afternoon supplements.

4:20-6:20 pm. We went to social-skills group. Martin wore glasses. On the way, he drank his camel milk. The group leader reported that Martin had a great session and participated well.

6:30 pm. Driving home from social-skills group, we pulled into Stop & Shop for Martin to pick out his own Lärabar®. Even though we have Lärabars at home, Martin takes great pleasure in going to the store and choosing one. (No doubt he also likes that Stop & Shop stocks “cherry pie” and “pecan pie” flavors, which I don’t keep at home.) Martin, glasses on, seemed energized, if not decisive. He ran back and forth between the standard Lärabar display and a temporary rack of “seasonal” flavors like “pumpkin pie” and “gingerbread.”

7:00-7:30 pm. Martin sat at the dinner table. His dinner was bone broth and pasta with squash and cauliflower. While Martin sipped his broth, I assembled and administered his evening supplements, including for the first time the Heilkunst drainage drop and a Heilkunst clear. He took them without issue.

7:30-7:45 pm. Although Martin loves pasta, after just a bite or two he pushed the pasta bowl aside and said he wanted to finish only his soup, which he did. He also requested dessert and ate a small piece of chocolate. Then he said he didn’t want to wear his glasses anymore, didn’t want to take a bath, and was going to get ready for bed.

8:00 pm. In his room, teeth brushed, pajama-clad, without glasses, Martin scrunched himself into froggy position on the floor and said his belly hurt. Did he need to return to the potty? I asked. Could I get him a drink of water? Would he like more soup? No, no, no, Martin answered. He climbed into bed and asked me to read him a story.

8:20 pm. Martin was in bed, lights out. From the kitchen, I heard him calling me. I walked down the hall to his doorway. “Mommy, my tummy hurts,” he said and smacked his lips. I realized what probably was coming and started toward his bed. Too late. Within seconds, Martin, his pillow, his sheets and blanket, several stuffed animals, and a small part of the mattress were splashed with vomit. In the mess I saw several undigested supplements, along with the few bits of pasta he’d eaten.

Martin almost never pukes. I think it’s happened maybe two or three times in his life.

And I didn’t know what caused it Monday. That was the TWIFU. I know that I should separate new supplements, treatments, therapies, and even vitamins by at least two-to-three days, in order to pinpoint the cause of any reactions. I know that. What did I do Monday? Without a second thought, I let Martin wear new glasses for several hours and started the Heilkunst. When he reacted, when he puked all over poor Curious George, I couldn’t isolate the cause. Was wearing glasses too much stimulation for Martin’s brain stem? Did he get dizzy? Or did the first Heilkunst clear cause his body to reject something? How could I tell?

I’ve been working at Martin’s recovery for four years. You’d think by now I’d have a clue.

P.S. Because of my carelessness, I had to undertake some additional investigation. By the time I finished cleaning Martin, washing linens, and doing my best with the mattress and pillow, it was late evening. (Admittedly, I would have been awake anyway. The Rangers went to a shoot-out.) I didn’t want to bother Dr. Zelinsky or Rudi Verspoor at that hour. Instead, I texted with another Dr. Z mom I know and posted an inquiry in a Heilkunst group on-line, which generated immediate responses. By the time I went to bed, I was 90% confident that the vomiting was unrelated to the new glasses and instead was a proper reaction to the first clear, which was a clear for the coxsackie virus Martin had two years ago. I was even more confident when Martin woke the next morning with a slight rash on his hands, a much lighter version of how he’d looked during the virus. Still, I can’t be 99.99% confident, and that bothers me.

So Here’s Something Else New We’re Doing

Posted on November 7, 2014 by findingmykid

We have started Heilkunst, a form of sequential homeopathy. We’re working with Rudi Verspoor of Ottawa’s Hahnemann Center.

Four years ago, when we started the process of recovering Martin from autism (as opposed to helping him live with autism, through traditional therapies), Adrian and I resolved not to go too far “out there.” The first MAPS doctor we brought Martin to is a graduate of Harvard College and Yale School of Medicine, and completed her residency at Massachusetts General. These credentials were important to us, because we didn’t want to be dealing with, as I put it, “a graduate of the Pacific School of Holistic Touchy-Feely Medicine.” (Let me also add that Martin’s first MAPS doctor is empathetic, intuitive, and utterly knowledgeable, and that we switched doctors only because that one moved to California.)

We’ve been through a lot in the years since Adrian and I resolved not to go too far “out there.” We’ve used two homotoxicologists, one in New York City who did not work out well—part of the problem could have been me not understanding homotoxicology at the time, and her not explaining the process in a way I could grasp—and for the last two years Lauren Lee Stone in Connecticut, with more success. Martin has participated in craniosacral massage, muscle testing, naturopathic assessment of food allergies. He’s drinking camel milk daily. He’s slept on a grounding sheet, inside an RF-blocking tent.

I suppose I’ve strayed pretty far “out there” with Martin, and Adrian hasn’t stopped us. When your son stops running in circles, and starts talking, and stops thrashing around in his bed, and starts realizing when you’re in the room with him, then you pretty much go where the journey takes you, and go gratefully. I still care, a lot, about credentials and science, but you could say my horizons have expanded.

On an “out there” scale of 1 to 10, with 1 being ABA and MiraLAX® for autism, and 10 being having Reiki vibes telepathically sent from Mongolia, I would put Heilkunst at about an 7.73. In their book Autism: The Journey Back, Rudi Verspoor and Patty Smith describe Heilkunst as a “comprehensive, integrated system of Western medicine based on the principles of natural law regarding the removal of disease (cure) and the restoration of balance in our functioning (healing).” As I understand the process, Martin will progress through a series of homeopathic “clears,” one every two or three weeks, to alleviate the insults to his immune system, from pre-natal development through today. The insults to Martin’s immune system have been many, from his traumatic birth to vaccinations to living in a home under renovation. I had to list all this out in order to begin Heilkunst. It was not a fun process.

Now, let me add this: Scoring Heilkunst an 7.73 on the “out there” scale does not mean I don’t have faith in the process. To the contrary, Heilkunst is energetic healing, and I am administering it to Martin, and I think my faith therefore is necessary to its success, and I would not have proceeded if I didn’t expect results. I’ve talked to many families whose children have progressed with sequential homeopathy. I’ve witnessed their progress. Plus, sequential homeopathy makes sense to me. I know many of the factors that affected Martin’s immune functioning; I’m eager to help him work back through what happened.

I’m also glad we did not start Heilkunst sooner. We needed first to get the biggest stuff under control: his digestion, his ability to rest, his communication skills to participate in the process.

And we had some mental blocks to remove. Mine.

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

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