Tag Archives: biomed

Now He’s Wondering

Posted on by findingmykid
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Six months ago, when Adrian and I tried to talk to Martin about his remaining challenges, Martin seemed almost indifferent. If anything, he avoided the topic.

During that conversation, which was designed to highlight Martin’s strengths along with his weaknesses, we discussed what we’re “good at” and “not so good at”—nothing about a diagnosis or giving a name to Martin’s challenges.

Subsequently, in one of our heartfelt bedtime conversations, I decided to offer Martin a more concrete focus. I asked whether he had ever heard of autism. (He thought he had.) Then I said that social situations are difficult because he used to have autism and still is catching up to his peers.

Again I was met by apparent indifference. Martin said, basically, “Oh.” I didn’t push the topic, but since then I’ve used the word “autism” occasionally: We eat a special diet to make sure the autism stays away, we take pills to finish getting rid of the autism, &c.

Martin never followed my lead and talked autism. Until now. Over the past week, Martin seems to have become interested in autism.

He’s asked questions designed to help him understand himself: “Does autism make me interested in adult topics?” Really not sure what he meant by ‘adult topics’! I’m telling myself he meant literature and history . . . . “Does autism make me see things different from other kids?” In these questions, he uses the present tense, as in, how does the fact of autism, regardless of whether it’s the current diagnosis, affect me today?

He’s told me things, for the first time, that confirm suspicions I’ve long held: Even before Martin seemed cognizant of the world around him, he was. We had this conversation:

Martin: “I hate that I’m bad at making friends.”

Me: “I know it’s still hard. Can we think about how it’s getting easier? This school year was so much better than last year. And I bet next year will be even better still. You’ve made progress. When you were little, you wouldn’t even respond to your name.”

Martin: “When I was little, I heard you calling, but I didn’t have the attention to answer.”

I’ve been trying to imagine that anguish. He recognized his name yet had no means to show us.

He’s forced me to impart some elementary biomed theory, as when he asked, “Why was I born with autism?” I responded by attempting to explain that something hurt his wellness system, whether before he was born or after. I referenced his uncles to explain that troubles with wellness systems run in families: Both my older brothers have asthma and environmental allergies, and one also has food allergies and has suffered from chronic bronchitis. These were perhaps the responses that left Martin looking the most quizzical.

Finally, he’s prompted me to reflect on my own feelings. He asked, “Do you think it’s fair that I used to have autism?” I started with honesty: No, I do notthink it’s fair that my son got autism. Then I tried to temper that answer by modeling gratitude. “Can you think of a friend who still has autism?” I wasn’t sure whether he would respond; we’ve never used the word “autism” in reference to any of his friends. But almost immediately, he named a little pal of his who uses “quiet voice,” i.e., whose verbal ability remains limited. I asked whether he thought his friend would like to be able to talk more, like he can now.

Martin said yes, that he thought his friend would like to be able to talk more. I said that I’m thankful for Martin’s hard work and progress.

My boy—whose verbal skills once were limited to echolalia but who, through biomedical intervention, has become able to express himself meaningfully through spoken language—guessed that his friend would also like to acquire spoken language.

For me at least, that answer gives lie to any neurodiversity movement that objects to biomedical interventions aimed at alleviating or eliminating autistic symptoms. In December 2014, I wrote on this blog: “[I]n all my experience communicating and working with other ASD families, I am yet to hear from anyone who regained his/her health biomedically and subsequently says, ‘I wish we hadn’t done this. I prefer being autistic to being neurotypical’.” I wonder if the day is approaching when I can count Martin among those who would never say, “I wish we hadn’t done this.”

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That’s Martin. I promise. It is.

Current Issues

Posted on by findingmykid
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We are off to visit Martin’s biomed doctor. I made a list of issues to discuss, which includes the following:

  • skin rashes, in the form of blemishes that Martin scratches and picks at until they bleed;
  • itchy skin overall;
  • impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome (Martin does not have Tourette);
  • obsession with foods, allergies, which foods he can or cannot eat, which are treats, and so forth;
  • trying to understand tough situations by putting Minions into those situations, like, “Bob [a Minion] was on the playground and another kid said he couldn’t use the swings. Is that nice?”;
  • constantly apologizing, which has been an ongoing habit.

(There were other issues on the list, too personal for sharing on the blog.)

What are your guesses, readers? Parasites? Metals? Lyme activity because we started using cryptolepis to treat babesia? A different form of the yeast beast? Dry winter air? Noticing differences between himself and other kids?

I’ll fill you in after our appointment with the biomed doctor.

And before you worry that Martin’s recovery is off the rails, I will add the following:

First, Martin’s self-awareness is blossoming. Even his teachers have noticed. After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her “racist.” (In light of Black History Month and Martin’s classroom unit on civil rights, our family has been doing a lot of talking about racism and our country’s legacy of segregation. I think he was angry at Nicole, and “racist” was the first insult he happened upon.) He added, “Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth.”

Second, this morning, by phone, Adrian said, “This past month or so, I’ve been having these awesome moments with him, where he’s just acting like a regular kid, and I can finally think, ‘This is it. This is the way it’s supposed to be. This is the reward’.”

The A-ha Moment: Part III

Posted on by findingmykid
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An old friend texted me, asking a favor. The two-year-old son of one of his law partners was just diagnosed with autism. Would I consider having lunch with the man, share with him our experiences?

No problem, I responded. The school/services/therapy side, or the biomed side?

Friend texted: “I told him about the dietary approach you took. Don’t know if they’re ready for that level of discipline but would be good for him to hear.”

“Dietary approach.” Love it.

I texted: “Over the years I’ve learned to approach the newbies gently, and tell them only what they’re ready to hear (plus maybe a little more).”

I have these types of meetings from time to time: friend-or-a-friend arrangements during which, depending on the direction the conversation takes, I tap, nudge, or shove the parents in the biomed direction. “Absolutely,” said Adrian, when I told him about the arranged lunch. It was one more opportunity to show our gratitude for Martin’s recovery thus far—that is, to imagine what our lives would be like today if we still had a son who postured because of gut pain, could not sleep unassisted, and neither acknowledged nor seemed to recognize his own parents.

Six years ago, I wrote about how my family got into biomed, in a series of three posts titled “The A-ha Moment.” Part I described our first realization that autism is medical and recovery may be possible. Part II told how a business contact of Adrian put us in touch with another contact whose wife, Annie, had recovered their son and was willing to talk to me. (A more precise description would be: “whose wife had recovered their son and was willing to spend a ton of time (seriously, an hour to start, and then hours more in follow-up) on the phone with me.”) Part III narrated—

Well, holy crap. In reviewing my blog in order to write this post, I’ve just realized that I never wrote “The A-ha Moment: Part III.” Me acabo dar cuenta de que soy una idiota. I thought I wrote it. I was sure I wrote it! Evidently, I never did. (In my defense, six years ago, I slept very little.) This situation must be remedied. I’ve rummaged through my home office and found the notes of the conversation back in January 2011 on which I intended to base Part III. Without further ado, I present The A-ha Moment: Part III:

The background. “You’ve got to talk to Betty [a pseudonym],” said my then-sister-in-law after Martin was diagnosed. “Her son has autism, and he’s doing amazing.”

I’d met Betty once, ten years earlier at my brother and sister-in-law’s house, when she and her husband brought over their two kids, a girl of about four and a toddler boy. I remembered the boy only vaguely. He’d run around and got into everything, like toddlers do.

I asked my sister-in-law to put me in touch with Betty. We scheduled a phone call, which took place the day after Annie had told me about recovering her son biomedically.

The conversation. I opened the Betty call by explaining that our son was undergoing formal diagnosis but that it was clear that he had autism, and that although we already had him in Early Intervention with ample therapy, we thought there was more we could do, medically.

“Oh, I’m probably not the best one to ask about that side of things,” Betty said. “We didn’t go in for the diet-and-supplementation stuff.”

No?

Betty explained that they had started biomed with their son—which, subsequently, I realized was kind of amazing, because this would have been years earlier, and everything was still pretty cutting-edge even when we started with Martin—but had given up quickly. “The diet was impossible. It just got in the way of all our family activities,” Betty said. Nevertheless, Betty assured me that, despite doing only traditional therapies, their son, now eleven years old, was fine.

Really? Tell me more. I was under the impression that a biomedical approach was necessary to really make progress.

Nope, Betty said. Her son was in a mainstream classroom.

That’s great! How does he relate to the other kids?

He’s able to do the assignments, except when the students pair up or work in groups. He’s not able to work cooperatively, so they let him do those activities alone.

Does he have friends?

Not really. He has one friend. They do a lot together. He doesn’t have any other friends. But he doesn’t care, so why should I? In social situations, he tends to isolate himself. When we’re going to be around other people, we let him bring a portable disc player and earphones to watch a movie.

He’s healthy? He sleeps and eats well?

Yes, he sleeps! No problem there. But his diet is terrible. He has food aversions. I have to send pretzels and potato chips for his school lunch every day, just to make sure he eats something. I feel like people think I’m a bad mother. He loves crunchy texture and salty flavor.

Sports?

No. No sports.

After-school activities?

Video games.

Readers, I’m sure you can imagine that by this point in the conversation I had decided that I did not like Betty’s version of “fine.” The picture she was so dire that I began to doubt my previous call with Annie, who told me about recovering her son. I thanked Betty for her time and insights. She concluded by reminding me that her son was fine and letting me know that my son would also be fine.

The follow-up. As soon as I hung up with Betty, I got back on the phone with Annie. Could she clarify? I asked. When she said her son was “recovered,” what did that mean? Was he quirky? A little bit off, in terms of social skills? Unwilling to eat regular foods, maybe? No, Annie answered. He’s recovered. He looks just like other kids. No one in his current school knows he ever had autism. He plays guitar in a kid-band with his friends. He likes sports.

I continued to press. There must be some difference? Annie seemed to think. Finally she said, “Sometimes when he’s playing basketball and it’s really noisy, he gets a little spacey and I feel like he could pay attention better.” That was it. That was what she came up with. The difference between her son and other children was that sometimes he got a little spacey on the basketball court.

The A-ha Moment, Part III: Behavioral therapy offers fine. Biomed offers recovered. We decided to aim for recovered.

Addendum. It’s not entirely correct to say I never wrote Part III. In a November 2011 post titled “Friendships,” I did reference what occurred in The A-ha Moment, Part III. I wrote: “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?’” That came from Betty, about her son who was fine.

Back to 2017. Last week’s lunch with my old friend’s law partner, though peppered with discussion of special-needs preschools and CPSE meetings, steered decidedly in the biomed direction. The man asked science-y questions, which I did my best to answer, and listened to my many self-deprecating observations that began with, “I know this probably sounds a little crazy, and if ten years ago, I’d met today-me, I’d think I was crazy. But I’ve learned a lot about health, the immune system, and how seemingly psychiatric conditions can be tied to the gut . . . .”

Two afternoons later, at Martin’s social-skills playgroup, a mother new to the group overheard another mother and I talking, and asked, “What do you mean, ‘biomed’ and ‘neuroplasticity’? I’m not familiar with any of this.”

I paused, wondering whether I should proceed. Then I said, “This is probably going to sound crazy . . . .”

All That Could Be

Posted on by findingmykid
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A former work colleague, now a friend, messaged me the piece on a Rhodes Scholar with autism. This friend has a brother with autism and a son with severe anxiety troubles, and she knows that Martin has autism. (She may or may not know that, really, Martin had autism.) About the Rhodes Scholar, she wrote simply: “Love this.”

I responded:

I love it, too. But I also don’t love it.

A story like this is terrific because it reminds people that ability does not depend upon behavioral factors, and that awkwardness or perseveration are often just covers for awesomeness! Also, it’s a powerful message to go out and achieve, without excuses.

On the other hand, celebratory and feel-good stories tend to normalize autism in a way that I find unproductive. This is what feeds the “neurodiversity” movement, the idea that neurological variations just happen, and we need to stop trying to “correct” neurodivergent behavior. It’s like, If you can be autistic and a Rhodes Scholar, why would you not want to be autistic?

I don’t support neurodiversity or the feel-good approach to autism. What’s also going on in this story is that a mother had to sacrifice her own career (in toto) and personal success in order to give her son this opportunity. And that this young man, an Oxford-bound college graduate, cannot live independently and perhaps never will. And that he needs a service dog to assist with interactions, and that it’s unclear whether he’ll achieve the depth of interpersonal relationships that lead to marriage and the sustenance of enduring friendships.

I guess that seems like a pretty bleak view. My view of persons on the autism spectrum is blindingly bright. They achieve so much despite struggling with issues that the neurotypical cannot, truly (I include myself), fathom. My view of autism itself, however, is negative. “Autism” is the symptoms of underlying health and immune disorders that can, and should, be treated. In terms of the young man profiled in this story, I would suppose that autism may have given him the (perseverative/obsessive) focus to acquire vast amounts of facts/knowledge. But that amazing brain of his would have been present and functional even without the autism—and perhaps he could have become an independent Rhodes Scholar who will miss his family and girlfriend and football buddies during his years in England. And perhaps his mother could be practicing medicine and available to help others, free from the monopoly of her son’s needs.

I am 100% sure this is more than you wanted to hear this morning! It’s a topic I feel so strongly about that sometimes I can’t help myself. The way I look at it is this: Autism was never an essential part of my son, and it’s not an essential part of anyone on the spectrum. It’s an imposed condition that can be alleviated or eradicated through the right biomedical treatment (though not always, not by a long shot). My son is witty and charming. He’s going to go to Princeton or maybe Yale, and he could well end up a Rhodesie, if he doesn’t decide the Marshall Scholarship or a Fulbright is a better fit. I’d prefer if he does all that without the burden of autism.

Does that make sense? Honestly, it’s hard for me to write about these things because I worry about offending others who are touched by autism, which as time goes by is more and more of us. I’ve got a “love the sinner, hate the sin” relationship with autism, albeit in foggier terms. I admire the person—and could do well enough without the autism.

I sent the message off with trepidation, almost chagrin. I like this friend. She’s never been anything but kind, and I feared insulting her. It is so tricky, to discuss recovery with an autism family member who’s not pursuing biomed. I would never want to suggest that anyone else is providing inadequately, or has to be doing biomed, or anything similar. We all do what we can.

I hope she responds well.

Guessing Game

Posted on by findingmykid
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Drafted in the morning, on the train, on my way to work:

Let’s conduct an experiment: How well do I understand Martin’s health these days? Can I predict what his super-knowledgable biomed doctor will say?

Martin is in a difficult place right now and has been for a month, ever since we last visited his biomed doctor in California, which was one month ago. Especially at bedtime, but also in spurts throughout the day, he’s beset by so much hyperactivity as to be nearly uncontrollable. The agitation and need for movement are affecting his ability to fall asleep; until nearly 10 o’clock yesterday evening, he was kicking his feet in bed, calling out, springing up to jog down the hall and return to bed. Daytimes, I’ve observed him engaging in his lone remaining repetitive behavior, which is to skip three steps pad-a-bump, run across the room, turn, stop and think (or ponder, or get lost in his own self for a few seconds), and repeat: pad-a-bump, run, turn, stop. Tuesday he did this even in our local coffee shop, pad-a-bump from the cash register to the front door, pad-a-bump back to the cash register. He’s giggly. He’s interrupting and talking over others, without regard for his surroundings. He has some increased sensitivity to sound. He’s so itchy.

Yet, as is often the case, the symptomatic behaviors seem superficial, and perhaps there is a deeper level of healing going on. He is more conversational than ever, answering questions and telling me what happens at school with minimal perseveration. His handwriting has improved dramatically; instead of gargantuan, unsteady strokes, he’s penning tight letters that actually fit on the paper lines. He’s attempting to make jokes, albeit nonsensical, unfunny ones. “I think Daddy’s going to take his hair off his head. Isn’t that funny? I’m just kidding.” He’s bargaining. “Santa Claus knows I didn’t finish my soup? That’s okay. I think Santa looks at the whole year, and I’ve had more good days than bad.” (What does he want from Santa Claus, you ask? Adele tickets. Martin has selected the most phenomenally in-demand tickets on earth and decided that’s what he wants for Christmas.)

Except for the itchiness, which predated our last visit to California, the hyperactivity, repetitive behaviors, and other symptoms began, as near as I can reckon, right when we returned from that trip, one month ago. The sequence was like this: Thursday afternoon we flew from New York to California. The flight was delayed, and Martin wasn’t in bed until 11:00 pm PST, or 2:00 am EST. He managed to sleep until 9:00 am PST, or noon EST. We spent Friday afternoon at the doctor’s and, as part of that appointment, Martin had an LED treatment. Friday evening we met friends (a father and his son, Martin’s age) for dinner, which went well. Martin fell asleep around 10:00 pm PST Friday night and slept well. Saturday was a packed day. We went out to breakfast, and then to see my friend’s new house, and then we drove inland an hour, to spend the afternoon with the same friend’s mother and to visit George the cat, who now resides on the West Coast. It was 6:30 pm when Martin and I returned to our hotel.

That night, Saturday night, our placid California weekend went awry. Martin knew we had to get up early (3:45 am) to drive 40 minutes to the airport, return our rental car, and catch the 7:00 am flight to New York. He was excited about getting up so early. Too excited. He went to bed giddy around 8:00 pm and—I don’t have a better way to put this—worked himself into a frenzy, calling out, laughing, asking whether it was time to get up. Around 9:30 pm, anxiety took over. Mommy! Mommy! Something is wrong! Mommy! I don’t know what’s going on. Mommy, where are you? [I was in the same hotel suite, using my iPad, where he could hear me and see the light I was using.] Mommy, help! Help me! His agitation mushroomed until he was sobbing and even shrieking. In an effort to calm him, I said, unthinkingly, “Martin, you have to stop. You have to stop screaming. We are in a hotel. Someone could think I’m hurting you and call the police!” That foolish statement became a target for his previously unspecific anxiety. Are the police coming? Are the police here? Will the police take me away? No! No! Mommy, tell the police not to come! I don’t want the police to come!

My poor little man was terrified and out of control. At last I took him to my bed, climbed in, and squeezed him until he began to calm. Once the sobbing reduced to whimpers, I released him and rubbed his head instead. Within two minutes from that point, he was sound asleep and I had quiet time to wonder what the hell had just happened.

When I woke Martin at 3:45 am, after just five hours’ sleep, he sprang from bed, evidently cheerful to be getting up at such a special time. I saw no trace of anxiety or giddiness. That day, Sunday, as we traveled home, he seemed restless and uncomfortable, which I chalked up to lack of sleep, but otherwise unremarkable. Sunday evening, however, he became hyperactive and had trouble getting to sleep.

Since that Sunday evening, we’ve endured the hyperactivity, some inappropriate laughing, continued itchiness, and lack of focus. Charcoal tablets help, but not always. We’ve started a new protocol of supplements, antimicrobials, homeopathic remedies, and yeast fighters; I’ve introduced the new elements slowly, and haven’t tied a specific reaction to any. Last week for Heilkunst we cleared a DTaP vaccine, again without a specific reaction, only the same hyperactivity. The hyperactivity is uniformly worst at bedtime, and Martin continues having trouble getting to sleep. He’s woken early a few times but generally sleeps through the night.

So what is going on here?

I have scheduled a short call with the doctor this afternoon. I’m going to write what I think is happening, and then, after I speak with the doctor, I will give her thoughts. I’m eager to see whether we agree.

My own theories: First, I think yeast is at work. I said, even before we went to California, that I believed Martin was suffering a yeast flare. The poor kid is so itchy. He’s scratched his legs and belly bloody. He’s giggly and “drunk.” Second, I wonder whether the LED he had in California might have kicked up some toxins that Martin is having trouble clearing. Maybe?

Drafted the next day, after I spoke with the doctor:

The doctor disagreed with my guesses. While yeast might be a subsidiary issue, she said, Martin’s hyperactivity makes it unlikely that yeast is the primary issue. Hyperactivity has not been a hallmark of Martin’s previous yeast flares, she pointed out. As to the LED, she said that any effects would have emerged during the 25 hours immediately following the treatment. Saturday night, when Martin experienced the anxiety attack that launched this hyperactive period, some 30 hours already had passed.

She admitted that it’s tough to know exactly what’s going on. Her theory: Banderol and borrelogen, the antimicrobials that Martin has been taking in incrementally increasing doses to treat chronic Lyme, are too strong. His sensitive system needs time to adjust. She reminded me that, when we used banderol three years ago, as well as when we used the antimicrobial takuna, we had to increase the dose extremely slowly—sometimes by not more than one additional drop per week. This go-round I’ve been building banderol and borrelogen by about a drop per day each. She asked me to hold the antimicrobials for 48 hours (or four doses, as we dose them twice daily) and she if Martin’s hyperactivity decreases.

I was going to post this blog entry after taking to the doctor. Now I feel like it’s worth waiting another couple days to announce the results of our 48-hour experiment.

Drafted two-and-a-half days after I spoke with the doctor:

Better. Around 6:20 am I messaged the doctor:

I think you nailed the issue. Since we spoke on Thursday, I have withheld banderol and borrelogen (so five doses withheld so far: Thursday evening, Friday morning and evening, Saturday morning and evening). We have seen a perceptible, marked decrease in Martin’s hyperactivity, and Friday night he was able to go right to sleep for the first time in weeks. Yesterday afternoon I took Martin into the infrared sauna for a detox cycle. Going in the sauna really, really agitated him. For an hour or so, the hyperactivity was back, full-force, and then we had some emotional dysregulation. On the other hand, last night Martin went right to sleep again, his pre-bedtime meltdown notwithstanding. What do you suggest? BTW, we have continued during this time with four drops Clovanol daily. Thank you!

Pretty intense, right? And I didn’t even tell her that he had flat-out refused to watch Pride and Prejudice with me on the sauna video screen. “Turn it away from me!” he said. “I don’t want to see it!” That evening, I messaged the doctor again:

An additional note: Today (Sunday) the hyperactivity was back up again, though not as bad as before. We haven’t restarted banderol or borrelogen. Today Martin also was “floppy” (this could be the lack of MitoSpectra) and emotionally volatile—he had a meltdown over where we chose to have Sunday dinner, and was not able to recover for quite some time. He’s in bed now, making noise instead of going to sleep. I’m wondering if yesterday’s sauna has lingering effects.

She responded by advising me to continue holding banderol and to restart borrelogen from one drop per day, or even one drop every other day, and build even more slowly than before. She also suggested that I keep Martin out of the infrared sauna for a while, as it may be too intense and also stirring up metals. Regarding the floppiness, she advised putting Martin back on mitochondrial support immediately, and said that might also help him better handle the antimicrobial herbs.

Drafted four days after I spoke with the doctor:

Hyperactivity is reduced again. Unfortunately, emotional dysregulation is taking hyperactivity’s place. (That’s a kind way to say that Martin is moving less but melting down more.) Also, Martin is distracted. This could be simply a result of the changes in his antimicrobials, and the fact that his new MitoSpectra hasn’t yet arrived. Here’s hoping that he evens out soon.

Note for careful readers:

Are you wondering why Martin has been off MitoSpectra? I knew it. You are very careful readers. The last two bottles of MitoSpectra I purchased went bad; the pills changed color and developed a fishy smell. I became nervous about continuing to use the product. But I do like MitroSpectra and believe it’s been helpful to Martin. After talking with a representative of the company, I’ve decided to give I decided to give it another shot. Help us, MitroSpectra!

Want to Know What Terrifies Biomed Parents?

Posted on by findingmykid
11

In my last post, about Martin’s disastrous Disney morning, I mentioned a nasty insect bite on Martin’s foot that’s had me worried.

I suppose many parents worry about insect bites. They’re itchy. They can become infected. Some folks have allergies; I myself react so badly to mosquito bites that I have to rely on antihistamines. There is West Nile Virus to worry about and, elsewhere, malaria.

For many of us in the autism-recovery community, I think, bites provoke a special, heightened fear: Lyme disease.

Lyme disease, which is transmitted by ticks, primarily deer ticks, has become endemic in many parts of the United States. Lyme disease is also implicated in the issues that many children on the spectrum have. Worst of all, because Lyme disease is so hard to diagnose, and can mimic other problems, it is difficult to get proper treatment.

In November 2012, a test showed Martin slightly positive to Lyme and one of its common co-infections, bartonella. We treated him with a course of takuna and other antimicrobials, and later tests showed no indicators for Lyme. But who knows? I dread/fear another infection, or one already present and unable to be diagnosed. When Martin plays outside, I spray him with a combination of essential oil in witch hazel or apple cider vinegar. I’m not going to use the chemical repellants, and I need something to keep the bugs away.

When Lyme disease is transmitted, a tick bite often will form a “bull’s eye” rash, a spot surrounded by a red circle. Can you imagine how I freaked out when Martin’s babysitter, Samara, sent me this picture of Martin’s foot, accompanied by a note that the bite seemed to be bothering him?

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In retrospect, “freaked out” might be an understatement. I exited a business meeting to research Lyme onset and how long the rash should last. I posted the picture to an ASD group on-line, seeking advice. Within ten minutes or so, Samara sent another picture indicating that the bull’s-eye-like rash had faded already into a more traditional insect bite.

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That seemed to be good news; from my quick research, a true bull’s eye would last longer. Also, Samara reported that the bite was now itchy; according to the moms who weighed in on-line (sometimes trustworthy, sometimes not), a bull’s eye usually doesn’t itch.

These developments calmed me enough to stay at work and not demand that Samara bring Martin to meet me at the pediatrician’s office. I did email the photos to Martin’s MAPS doctor, who recommended additional anti-microbial drops as a preventative measure, and told me to visit the pediatrician or emergency facility, for antibiotics, if we noticed any other symptoms. We didn’t, thank goodness. We stayed on the extra anti-microbial drops, in case.

When the Disney morning from hell rolled around, my mind returned to the bull’s-eye-cum-mosquito-nibble. Sometimes ASD recovery feels like a continual series of freak-out moments.

Or maybe that’s just what parenting feels like.

Pill Pushers

Posted on by findingmykid
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I just spoke with another autism mom. She was distraught because the neurologist who performed her son’s MRI had called to say he found evidence of possible/potential seizure activity. She was confused because the neurologist told her to give her son anti-seizure medication, regardless of the side effects and the uncertainty whether seizure activity is even occurring. She was angry because she felt like the neurologist just wanted to get off the phone and had no interest in addressing her questions.

Why are doctors pushing so much medication?

On his latest neurodevelopmental psychological exam, Martin tested strong, academically. Although he has just started first grade, he is functioning at a second-grade level. But, the mainstream doctor who oversaw the exam stressed, when Martin gets to third grade, where the curriculum requires inferential reasoning, he might fall behind; because he can’t attend well, he can’t form inferences, either.

We know attention remains a problem for Martin, Adrian and I assured the doctor. What can we do to address it?

“Medicate him,” the doctor replied.

Medicate him?

“Medication might really get him over the hump when it comes to attention,” the doctor said.

We’re trying some other approaches right now, I said. We’re excited to be starting treatment with Dr. Zelinsky, using a sensory approach to retraining the brainstem. And Martin’s autism symptoms, including attention, tend to get better in spurts, as his body heals. Maybe by third grade we’ll have attention up to par.

“Sometimes those types of treatments can help,” the doctor said. “Still, we should start medicating sooner, rather than later. Martin’s a tricky case. It’s not clear whether he will respond better to a stimulant, a depressant, or some combination of both. We’ll have to fiddle with dosages and drug types to see what works best. If we start right now, then by third grade we’ll have it figured out.”

Adrian and I told the doctor we would like to hold off and give ourselves time to think about the medication option. Then we thanked the doctor for his time and promised to keep him updated.

This particular doctor expressed surprise at Martin’s progress since he was last evaluated, two years ago. I explained what we had done to provoke the progress, including biomed, homotoxicology, and HANDLE therapy. The fact that Martin has come so far using those approaches did not seem to affect, at all, the doctor’s opinion that we should medicate. I am not necessarily against the medication option forever, and I certainly don’t judge parents who decide to medicate their children before trying what I consider more natural treatments. That being said, I am sick of mainstream doctors trying to push medication on us at every turn. Medicate, medicate, medicate.

To the fellow autism mom who called me this afternoon, I said:

“Make a list of your questions. Demand an appointment. Bring your husband. Request copies of the MRI results. Send them to your biomed doctor, your ophthalmologist, any of your specialists who know how to read MRI’s. Get all your questions answered. Then decide if medication is the right choice.”

Because sometimes medication is the right choice. And often it isn’t.

Judgments Redux

Posted on by findingmykid
2

First an addendum, now a redux. Sorry.

In my defense, this was going to be part of Saturday’s “Judgments” post, but that post was getting way too long.

“Judgments” ends this way:

“And so that’s it. I’m way, way beyond throwing stones at how anyone else treats autism.”

Which sounds pretty good, as if I’m all warm and fuzzy and “I’m okay, you’re okay.”

That last line, however, was carefully worded.

Here is a comment, written by an autism parent, in response to the CDC’s new estimate that one in 68 United States children is diagnosed with autism:

I’m kinda pleased…. When autism is more prevalent than ‘normalacy’ autism acceptance will be a whole lot easier! As you know, my son has high functioning autism and I don’t believe he needs to be changed or cured at all. Yeah, he sees the world differently, but different isn’t inherently wrong. I appreciate I can’t speak for all kids, but I love my very individual little boy just as he is 🙂

A mother in an on-line ASD-recovery group cross-posted that comment, from another group, with the identifying information removed.

Warning: I am about to be judgmental.

That “kinda pleased” comment is appalling.

I too “love my very individual little boy just as he is.” Indeed, I cannot conceive of anything Martin could do that would make me stop “loving him just has he is.” This extends even to moral culpability: If Martin recovers from autism, then grows up to be a serial killer, or a rapist, or a child abuser, I will be devastated, I will applaud when he is jailed for life, and I will seek help for his sociopathic tendencies. But I will still love him, even as he is.

Autism has no moral component, except perhaps insofar as manmade environmental factors are contributing to the rise in autism rates. In any event, Martin is not culpable. And if I am willing to get past intentional failings, how could autism ever make me reject “my very individual little boy just as he is”?

Loving a child is easy. Accepting a child is easy. As I have written time and again, there are days when I want to give up biomed, homeopathy, special diets, therapies, and everything else we do for Martin. At the lowest points, I want to say, “Martin has autism. I’m going to leave that as it is, and tell the world to accept autism.” I want to do so because that would be easy.

But I don’t. I don’t give up. My son does need to be cured. I would never say, “I don’t believe he needs to be changed or cured [of autism] at all,” any more than I would say, “We’re going to leave the multiple-personality disorder untreated. I love each of his personalities,” or, “Why eliminate psoriasis? I’m fighting for psoriasis acceptance instead.”

I’m way, way beyond throwing stones at how anyone else treats autism.

As for those who hide behind “acceptance” and “awareness,” who advocate “neurodiversity,” who stand by as autism takes over our children, who choose not to treat the condition at all—

For their approach, I have no patience.

I would never tell a parent who refuses to treat autism that she is selling her child short. Telling her that wouldn’t do anything to change her mind, and it might make her feel bad about herself. Instead, I try to lead by example. If asked, I respond that all kids are different, and that our family follows a special diet and biomedical protocol, and that Martin has made tremendous, if slow, improvement. I answer any questions honestly. I smile.

In my head, though, I’m thinking this:

I feel sorry for your child. Healing an immune system is hard work. Accepting autism is a lot more convenient. For you. Your child will have a more difficult life because you’ve chosen the passive path.

Stones be thrown.

Judgments

Posted on by findingmykid
4

Our family is working to alleviate Martin’s autism by healing his immune system, instead of using medication to disguise the health problems. One day, that approach could change, as I mentioned in the post titled “New Sleep, No Crutch”:

Of course I’m familiar with methylphenidate, amphetamine salts, guanfacine, and so forth—drugs that might improve Martin’s still-abysmal attention span. Maybe one day we’ll turn to such resources (in the end, I remain a pragmatist). But for now, while we have the time and opportunity, I choose to work toward eliminating the cause of his short attention span, instead of using drugs to mask the symptoms.

In response, I received this comment from a reader:

As a pharmacist and a mom with a child diagnosed with Asperger’s I think your approach is great. I hesitated giving my own child medication until absolutely necessary. After years of hesitation, finally treating my son’s attention deficit with medication allowed his grades to improve significantly. If you aren’t at the point where that is necessary, by all means use as little drug intervention as possible.

Let’s talk about a topic underlying that comment: judgments.

I went to last year’s Autism One conference with my friend Stacey, who is also working to recover her son. Stacey attended Kerri Rivera’s presentation on her chlorine dioxide (ClO2, or “CD”) parasite protocol. (I was at another, concurrent lecture. Don’t remember which.) After Stacey told me about CD, I looked up some information and talked to many parents who use the protocol. Basically, Rivera uses low-dose oxidation, in the form of chlorine dioxide, to destroy pathogens/parasites and heavy metals.

I told Stacey that CD is not a protocol I would try with Martin, because (1) I have concerns about its long-term health effects, and (2) it requires giving enemas, which I think would violate Martin’s body integrity. (We treat pathogens and parasites through other methods. For example, Martin consumes diatomaceous earth daily, and around each full moon he takes pyrantel and, topically, warmed castor oil. In the past, Martin also has swallowed mebendazole to fight parasites.)

Some weeks later Stacey and I, back in New York, met for lunch. Stacey told me that she had done more research, read Rivera’s book, been in contact with Rivera via email, and ultimately decided to follow the CD protocol with her own son. As Stacey told me this last part—that she had decided to go ahead with CD—she looked away and ducked her head as if she were about to get slugged. Then she added, “I know you’re not keen on CD. I just feel like it will help. Don’t judge me.”

Much later, I had lunch with a friend whose elementary-school daughter has been diagnosed with ADD or similar disorder. My friend wanted to talk about what we do for Martin and whether any of our protocol might help her daughter. I explained what I think are some underlying similarities between ASD and ADD, and what diet and supplements might be able to achieve. She mulled the information, asked a lot of questions.

Fast-forward two months. I was lunching again with the same friend. She said that she and her husband are medicating their daughter to help the ADD. I sensed that she was watching for my reaction. Then she added, “We did try fish oil. It didn’t seem to work.” I realized my friend was afraid that, because we do diet and biomed/homeopathy for Martin, and not medication, I was going to deride her family’s decision to medicate.

My response was the same, to both Stacey and this friend. I said: “Don’t worry. After three years of biomed, I am way, way beyond judging anyone else’s path.”

I, personally, believe that Christianity, and specifically Protestantism, and more specifically the Protestantism most closely associated with the Magisterial Reformation, though tinted with elements of the later Radical Reformation, is the truest faith. That’s why I practice Mostly Magisterial Quasi-Radical Protestant Christianity. It does not mean that I think my friends who are Roman Catholic or Jewish or Muslim or Hindu or nothing at all are “damned” or destined to unfulfilling lives. I think I’m right. They think they’re right. Maybe we’re all right, to whatever degree.

In the world of children with challenges, regardless of what path a family takes, I respect anyone who is (1) trying, and (2) not acting callously. Stacey has looked into the CD protocol and believes it will help her son. My friend reports that a drug targeting ADD has ended the homework battles that were ruining her evenings. The pharmacist who was kind enough to comment on my earlier post hesitated to medicate her son but now finds that doing so has improved his focus and grades.

Plenty of people—I’m pretty sure that, somehow, I run into all such people, all of them in the entire world—are ready to condemn my and my husband’s choices for Martin, from diet to homeopathy to school. I hate that. I hate to be judged.

And so that’s it. I’m way, way beyond throwing stones at how anyone else treats autism.

Martin, out and about. No judgments here.

Martin, out and about. No judgments here.

Biomed. It’s Time

Posted on by findingmykid
15

Readers, we’ve known each other a long time now, even if ours is kind of a one-sided relationship. I’ve decided we’ve reached that point where I can shorten “biomedical intervention[s]” to just “biomed.” If you’re new here, or have questions, or detest when people say just “biomed,” then leave a comment, or email FindingMyKid@yahoo.com. Regards!