Bound To

The autism recovery path is so jagged—so many ups and downs—that the key to longevity is managing my own emotions. Well, one key. Other keys are financial stability, a supportive co-parent, close friends, a cooperative school district, available therapies, access to organic foods, home ownership or other opportunity to create a cleaner living space, and let’s face it, we’re talking about innumerable keys. But certainly managing my own emotions is one. I struggle not to pin my mental state, any given day, to Martin’s transitory condition. Martin has good days and bad days, good weeks and bad weeks, good months and bad months. I don’t mind the elation when Martin feels well and performs well. Giving into despair when he doesn’t is a recipe for driving myself crazy.

That being said, it never ceases to bewilder me when Martin looks near-typical one day and strongly symptomatic the text, without any obvious intervening factor.

Two Fridays ago Martin earned his yellow belt in taekwondo. He didn’t perform exactly as well as the other eight-year-olds being tested but nonetheless paid attention and made the correct moves and legitimately earned the belt. We went out for sushi to celebrate, and Martin went to bed early. He spent that Saturday in New York City with his uncle Eddie. By all reports they enjoyed themselves and Martin’s behavior was stellar. Saturday evening we had dinner at home; Eddie (who eats meat, occasionally) and Martin had organic roast turkey, Brussels sprouts, and brown rice pilaf with vegetables and sprouted pecans. Martin, exhausted from his day, again went to sleep early and without incident. That night he slept 11-and-a-half hours.

Nothing changed.

Nothing, except that Sunday morning Martin was antsy in church. He rocked around during children’s time and, I learned later, disrupted Sunday school with incessant talking. That afternoon he became crabby. Sunday night, alternating between anxiety and cracking himself up, he had trouble falling asleep. I dropped off close to 11:00 pm. He was still awake.

Monday’s school report was—less favorable than one might hope.

Tuesday’s report was—disastrous. After school, Martin looked goofy and distracted at taekwondo class. At church Kids’ Klub, in front of all the children, he called the teacher a “liar” when she misspoke and said “tomorrow” instead of “next week.”

By Wednesday evening, following a trombone lesson that made me ask myself why I’m still paying for trombone lessons, Martin was running back and forth. Remember that? Run from sofa to stairs, stop, turn, space out, then jump and pa-dap-BUMP, run back to sofa, stop, turn, space out, then jump and pa-dap-BUMP, repeat. Classic repetitive behavior. Haven’t seen it in months. Months. Before Wednesday, I would have put “running back and forth” into the “so far gone” bucket.

There were other behaviors too, both at home and at school, that for Martin’s privacy I’d rather not document here.

On Thursday, Martin started to reemerge from the mystery fog. Thursday’s note from school said, “Martin had a better day. :-)” Friday, which was a parent-teacher conference day with no school, Martin had a successful play date with two friends and focused well at taekwondo. Saturday afternoon he worked three hours on a Lego project with Adrian, without complaint. Sunday he hosted a home play date for three friends.

The Friday-Sunday update is based on reports from Adrian and Samara. I was away for the weekend, with six girlfriends from high school. Some of them read this blog. Thanks, ladies. You sustain me.

So why did Martin, without any apparent external stimuli, tank for several days? I don’t know.

And why did Martin’s Wednesday ROOS, combined with a Friday parent-teacher conference about behaviors that are causing fellow students to alienate him, send me into a tailspin, albeit a short-lived tailspin? That I do know, and I’d like to find a way to change the answer.

 

Week Four. Disaster?

It was all going so well. Or pretty well. I mean, it was going.

Wednesday of Week Four came the harbinger that the adjustment to Martin’s new school may not be as smooth as appearances. I was working in my City office when, right about school-dismissal time, I received this email from Martin’s teacher:

Hi Mrs. [M—],

Martin had some trouble today during both “Read Aloud” time and Silent Reading.  As I was reading aloud to the children on the carpet, he made noises and distracted the other children.  I needed to stop several times to remind him how we show good listening.  The other children really enjoy “Read Aloud” time and become frustrated when we need to stop many times.  He also had trouble reading silently this afternoon during reading time and could not control his laughter and calling out. We moved his color clip to yellow today but he shouted how he doesn’t care and he’s not going to try tomorrow.  It seems that these two times are particularly troubling for him during the day.  When I do see the behaviorist this week I will ask her to help us with a plan for these two times.

I just wanted to touch base and let you know our concerns here today.

Thanks so much,

Mrs. [N—]

Oh no! Oh no! I have two greatest fears, this first month at Martin’s new school: (1) bullying/rejection, and (2) that he will be removed from general education. This email, while mostly directed at fear (2), also touched upon fear (1), namely, that Martin’s behavior was frustrating the other children. The situation came with the compounding factor that uncontrolled laughing and outbursts are often related to Martin’s biomedical treatment, as when we are “kicking up” too many bugs/toxins/parasites/whatever. “Sorry about that. Must’ve kicked up too many parasites again” is not the most practicable response to give a mainstream public-school teacher.

Immediately I responded, copying Adrian and Martin’s behaviorist:

Mrs. [N—],

Thanks so much for the update, and I can imagine that it must be frustrating if Martin was distracting the other children. Could you tell me—is this behavior new, or has it been ongoing? We have had (short-lived, I’m glad) times in the past when Martin had trouble controlling his laughter, so it would be helpful to know how long it’s been continuing this time. We will absolutely address this with Martin and also check in with Darlene [the behaviorist] about her opinion on how to handle.

I will let you know what Darlene and I discuss, and I’m sure you will have a chance to speak with her this week also. Please keep us posted.

Best,

Maria

Next, I texted Darlene:

Just got an email from Mrs. [N—] that Martin is disrupting reading time with laughter and outbursts. She wants help with behavior modification suggestions.

She responded within seconds, seemingly aware of the situation already:

Yes. Sorry, I was supposed to go there today. Still sitting at desk at home doing emails and plans. Aide reached out yesterday, said he was silly. Thought maybe tired.

We continued:

I’m contacting his doctor now about whether we can cut back on anything that might be causing the silliness, but I’m worried. I think we should get a plan in place ASAP. Can you get to [his school] tomorrow?

Yes.

At this point, Darlene telephoned me. She said that she thought Martin’s behavior—especially the part when he said he “doesn’t care” and won’t even try to achieve “green light” rating tomorrow—might be a reaction to some of his first rejection experiences. She relayed an event the previous week when the teacher had asked the class to pair up for an exercise. The pupils began turning to whoever was closest and forming groups of two. Martin missed the social cue and instead yelled, “Who wants to be my partner? Who’s going to be partner with me?” He ended up the only kid without a partner. Darlene also said Martin has been withdrawing more at recess, and that his aide has had increasing trouble getting him to engage. She did say that sometimes Martin sits with a couple kids who play with stuffed superhero toys, and that maybe he’d like to bring a similar toy to play along.

We hung up, but my mind was still on Martin, and definitely not on work. I wrote a message to Martin’s doctor, asking what we might antimicrobials we could consider relaxing, and what else I could do to support him and control the laughing fits.

Darlene and I started texting again:

Glad I wasn’t there when no one partnered up with him last week—that kind of stuff just kills me.

I know. It was a day when substitute was there.

Substitute teacher, or substitute aide?

Teacher. There was a sub teacher for a couple days last week. All these could be contributing.

Miss I [Martin’s aide] was his partner for a bit, then she switched and was a partner with someone else and Martin partnered with a student.

Eek. Need to find a better way to address these skills.

Writing to teacher and aide now.

Please let them know that Adrian and I take this seriously and will work with everyone to resolve ASAP.

I just heard from Samara. She said Martin told her immediately that he was laughing too much at school, and agreed that he lost his iPad privileges for today. She also said he said, “Maybe I can use it tomorrow,” which would suggest he was just frustrated when he said he’s not even going to try.

Exactly. I think it was just because he didn’t know what else to say. I sent email just asking if certain times of day or activities [are problematic]. How are peer relations. I did not copy you as I want them to give straightforward responses.

Yes, that’s good. I have already contacted the doctor. Since I am not at home tonight, I asked Samara not to be angry at him, but more to try to build his confidence about earning iPad tomorrow. I pass through Penn Station on my way home. I will check the shops for a superhero of the type you mentioned. I can also check Stop & Shop when I arrive home late.

This was certainly a diversion from arguing about Conjoint Analysis plus to determine consumer valuation of product attributes.

My attempts at humor are so lame. Darlene didn’t respond to that last text. Instead, she sent a picture of the stuffed superhero she’d mentioned, the kind two boys had on the playground:

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I kept going:

Thanks. I will take a look ASAP. And if you have words of reassurance, please feel free! Of course I am currently doubting whether we made the right choice for this year, but that may be just premature freaking out.

Absolutely just freaking out.

Okay. That’s me, I guess.

As horrible as it sounds it’s better for the kids to treat him as any other kid then to treat him as the class pet with special needs. Does that make sense? If they’re treating him like they see him as an equal.

        Maybe. If he’s ready.

Meaning he’s going to be going through some Growing Pains like just any other kid. My daughter comes home sometimes to say the same thing nobody playing with her. I just have to create something to help them through lunch and recess so he can get some friends.

Would you consider throwing like a fall party or something maybe even at your house as a get-to-know-everybody party. Unfortunately his birthday isn’t until June. Could you do a Halloween party? This way you could get to know some of the other moms and maybe start to have some play dates to foster some relationships just one-on-one.

Egads! Was she kidding? With my introverted nature and minimal confidence in my own social skills, I live in perpetual anxiety. What if I threw a party for Martin, and no one came?

Hmmm. Not a bad idea. But I do have a fear of no-shows! We have a play date this Friday with Lucas from his class. Fingers crossed. Also, I love the way your autocorrect capitalized “Growing Pains.”

Okay great.

That seemed like my cue to stop texting Darlene. So I did, for a few hours. At 8:30 pm, on my way home (Wednesdays I work late), I texted her a photo:

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Found this at Penn Station Kmart. Not exact but I hope close enough.

Perfect.

Hooray! I will send it to school with him tomorrow, with the instruction that he can take it out for recess. I detest the Penn Station Kmart. Only dedication to my child could make this happen.

You’re the best.

Martin is the best. Just want to help him understand that.

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

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

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.