Category Archives: Deep Thoughts

Although I try to avoid them (I don’t try too hard), some “big picture” thoughts about autism and this blog are bound to appear. I’ll categorize my deep thoughts here.

Easy Peasy, Puddin’ Squeezy

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Martin’s school sent home a note to all parents, asking us to make sure our kids keep sneakers in the classroom, to wear to the gymnasium.

I, of course, could not remember whether Martin has sneakers at school.

So I asked him.

And he answered, with a nod.

“You do?” I asked. “Which ones?”

“The blue ones with the yellow swoosh,” he replied.

“Those old ones? Do they still fit?”

“They fit. I tie them myself.”

I used the italics, above, for the benefit of those readers outside the autism community. The others, like parents with a child on the spectrum, know the import of asking my child a question, expecting an answer, and still more, expecting an accurate answer. Once upon a time (for example, last year or any other time in memory), finding out whether Martin had sneakers at school would have required writing a note to his teachers and awaiting their response. Being able to ask him—that’s way more convenient.

Last Saturday, while Adrian was out of town skiing, Martin “took me out” to lunch. We had just settled into our seats when Martin said he had to go to the bathroom. “All right,” I said, “go ahead.” He left the table. He returned five minutes later, his hands still damp from being washed. As far as I can tell, nothing eventful happened between our table and the restroom. Later, I left the table for a minute. I asked Martin to stay put, and gave him my iPhone to amuse himself. He stayed put. When I returned, our waiter said casually, “Your son told me you’re going to the trampoline place this afternoon. Have fun!”, as if my son telling the waiter our plans were an everyday occurrence.

In fact, even though Martin was hyperactive and off balance from his Lyme treatment (again!), the whole weekend that Adrian was away ran smoothly. Friday evening Martin and I went to meet his new trombone teacher. Remember how disappointed Martin was when he didn’t receive a trombone for Christmas? Since then, he’s persistently asked to start trombone lessons. Finally I called music schools—most instructors weren’t willing to work with a child younger than 10—until I found a jazzy older fellow who said something like, sure, we’ll just find an alto trombone so your son’s arms aren’t too short to reach every position on the slide. We ended up buying an alto “pBone,” which is a real instrument whose exterior is plastic instead of brass (with a resulting price decrease!). The teacher-student meeting went well, and since then Martin has started his lessons.

Saturday morning Martin and I attended a student production of Cinderella at a local school, then went out to that lunch, and then met another family for a play date at the trampoline center. For dinner I made a cashew-carrot soup, which Martin ate with a spoon, instead of the stainless-steel straw on which he used to rely. Sunday we went to church—Martin participates in Sunday school with the other kids—and then to his hockey lesson. He chose to spend extra time on the ice after his lesson ended.

Once upon a time I dreaded weekends without Adrian; activities with Martin were a chore, but downtime at home resulted in stimming and meltdowns. Last weekend, the Lyme treatment had Martin at his worst. (Things haven’t improved much; stay tuned.) His worst right now is so much more manageable than his best used to be.

I’m thinking right now about parents of neurotypical kids. For sure, they have their own challenges. That being said—holy cow, parenting a child who can answer questions, complete simple tasks alone, and amuse himself for a few minutes now and again feels almost like doing nothing at all.

Parents of neurotypicals: Is it always like this?

I know that we have travails to come, as Martin continues to recover. At some point, he will transition from special education to general education, and we will have to worry about bullying and self-esteem. As he understands more about what his friends and classmates want, peer pressure will become an issue. And we have travails now. Martin’s continued perseveration, though milder than it used to be, perversely annoys me even more. The uneven temperament that comes with the Lyme treatment is bewildering. Parenting Martin will never be laissez-faire, at least not for me.

But, actually, maybe it kind of will be easy. If raising Martin had been like last weekend all along, I might just have more kids. Lots more.

New Year!: We Zipped by a Whole Foods Market

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There are times when I should trust my instincts.

Remember when I thought Martin was having a yeast flare, but went with the plan of his his doctor, who didn’t think yeast was the issue?

I was right. Yeast was the issue, and by not addressing yeast directly and immediately, I let it get worse. By four days into our Utah trip, Martin’s skin was a mess. That’s his “tell,” for candida. He gets a mild rash on his legs and belly, which spreads to his arms and backside as he scratches and scratches until he’s covered with bloody nicks. It’s awful. December 30, though we rubbed balm from head to toe, Martin could not stop scratching, and I was washing little spots of blood off his sheets and clothes.

I messaged his doctor, attaching photos. She agreed that we needed to take immediate anti-yeast measures and suggested Martin go back on Candex. This time, I supplemented her opinion with my own and decided to kickstart the new treatment with two weeks of Candidase.

. . . Which explains why, New Year’s Eve, after getting up late and skiing and meeting Adrian’s colleague for a drink, I insisted on driving to the Park City Whole Foods Market for Candidase and Candex.

As I wrote this, one week after New Year’s Eve, the situation has improved dramatically. Candidase works best on an empty stomach, so each night after 10:00 pm, I slip into Martin’s room and give him two Candidase capsules, which he swallows without waking. I do the same thing before 6:00 am, and he takes a third dose immediately after school. For the time being, I’ve cut the already sparse grains from his diet, and tried to further limit natural sugars. Last Sunday, just after we returned to New York, I baked semisweet spinach brownies, which are nut-free (appropriate for school snacks) and better than they sound.

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Whenever possible, I’ve been substituting those for the Lärabars Martin loves, which are healthy but, because of the dates, high-sugar, at least by my standards. Instead of a (grain-free but still sweet) baked good like banana bread, Martin has been eating vegetable omelets, sometimes with turkey bacon, for breakfast.

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Martin still scratching, though much less. His belly looks good. His arms and legs are beginning to heal again. He is comfortable.

Honestly, I am disappointed that Martin has had yet another yeast flare. I had hoped that, by this time, his system would be healed enough to keep candida in check.

But who’s got time for wallowing? I’m in battle.

 

Curse the Night

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Christmas Day, 1:30 am.

I lie, awake, next to Martin, in his bed. He too is awake. Christmas Eve he went to bed about 8:30 pm, eager to get to sleep so that Santa could come, and dropped off immediately. Adrian was seeing Star Wars: The Force Awakens with my father and brothers, so I had time to finish wrapping gifts and even bake some ginger spice cookies, which turned out terrific. I thought about updating my Facebook status with some ditty about the peace and tranquility of Christmas Eve.

At 11:40 pm, just as Adrian and I had gone to bed, Martin woke. Night waking, like bedwetting, is so rare nowadays that I can’t remember the last time it happened. Martin can still take a while to fall asleep, but once he does, he’s out till morning. Tonight, he called out, saying he thought he saw it getting light outside, and asking whether Santa had come. I told him that it wasn’t even midnight yet, and that he could go back to sleep.

He hasn’t gone back to sleep. He is so concerned with getting back to sleep for Santa Claus that he’s worked himself into an anxiety attack, crying and wheezing. Adrian spent some time trying to comfort him, to no avail. Since 1:15 am, I’ve been here, in Martin’s bed, soothing him, hoping for sleep of my own, wondering what Christmas Day will be like when I’m exhausted.

Here’s the thing about being awake in the middle of the night: When I’m lying in the darkness, all my fears grow. Every single fear. From work deadlines to household finances to body image—they get worse. Problems loom insurmountable. I think about this issue and that issue, this concern and that concern, until finally I crash into the unmentionable fear: that if Martin never recovers fully, this will be my life forever. Autism will be my life forever. There will never be a time when my child achieves independence. There will never be a time when I can turn back to my non-Martin goals, to what I want to achieve for me.

Why do I call that fear “unmentionable”? Because it is selfish. Because it borders on blaming Martin for my own shortcomings. Because it affixes my personal journey to factors that depend on Martin but over which he has no control. Because my official position is that Martin will recover fully, and it’s only in the wee hours that doubt makes inroads. It’s only when I want to be sleeping, or reading, or writing, or even working, or anything other than lying next to a boy who can’t stop fidgeting, crying, laughing—only then do I think, “What if he’s done getting better? What if this is as good as it gets?”

It’s just better not to mention it.

Christmas Day, noon.

I must have dozed off, in Martin’s bed, sometime after 2:00 am. I woke at 3:50 am to find him asleep, finally, and then I returned to my own bed.

I woke again at 7:45 am, to the breathtaking melody of Martin, down the hall, conversing with my father, who is visiting. (Yes. Conversing. Answering questions and asking them in turn. How old are you, Poppa? That’s old. I’m seven. What year was it when you were seven? Grandma was already born then. Are you older than Grandma?) We had left one special gift unwrapped by the tree, and Martin played with that until everyone was up and ready to open gifts. Once all the gifts were unwrapped, Martin asked:

“Is there another gift to me from Santa?”

I realized right away what he wanted. The trombone. When he’d made his Christmas list, he’d included a trombone. At the time, the trombone seemed no more desired than the other gifts, most of which he received. In the day or two before Christmas, long after all gifts had been purchased, the trombone acquired new gravitas. Martin began to speak frequently of the trombone Santa was bringing him, and how he planned to learn to play the trombone, and how he would become good enough to play in a marching band by high school. Trombone, trombone, trombone. But seriously, I was not going to interrupt all other plans to procure a toy trombone.

“No, honey. I think that’s all that Santa brought you.”

Martin started to cry. “‘You get what you get?’ You just get what you get?” He was quoting our pastor, who upon assigning parts for the Christmas pageant had told the kids, “No complaining. You get what you get.”

I conveyed to Adrian why Martin was upset—I mimed playing the trombone—and Adrian moved in to comfort him, explaining that Santa might have thought that he is still too young to learn the trombone and needs to wait another year.

And then—Martin pulled it together. He was still upset, but he stopped the tears and moved to pouting and whining instead. No full-blown meltdown. No screaming. He asked, “Santa thinks I’m too young? Maybe next year?” All in all, the response seemed more age-appropriate than autism-indicative.

It’s noon now. Everyone has eaten a special Christmas breakfast, which was gluten-free French toast with cranberry compote. Martin played with his new gifts (he’s favoring a set of Beatles figures, and also a “play the trombone” app I downloaded hastily to his iPad) and then accompanied Adrian to the gym. My brothers are playing backgammon. My father is napping. The house is quiet. I’m starting to prepare Christmas dinner: cannellini-bean latkes, roasted Brussels sprouts leaves, and quinoa pilaf. Last night’s fears are last night’s fears.

I’m thinking about updating my Facebook status with some ditty about the peace and tranquility of Christmas Day.

I Promised an Informative Post About Mitochondrial Support. Sigh

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I tell myself often that I should be writing less about Martin’s breakthrough performances and more about the process of biomedical recovery and homeopathy: what his blood and urine test results show, which supplements we’re using, how antimicrobials are affecting chronic Lyme disease, how I’m tweaking his diet and why.

Recall the correspondence I had with Martin’s biomed doctor about the hyperactivity Martin was experiencing. I guessed that the culprit might be a yeast resurgence. The doctor thought we were too quickly increasing borrelogen and banderol—hose are antimicrobial herbs we use treat Lyme disease and bartonella, a common Lyme co-infection—without enough time for Martin’s body to adjust. She suggested that we go off banderol temporarily, and that we build the borrelogen more slowly. Relevant to this post, she also wrote, “Please start the other mitochondrial support as we discussed, as the supplements should help not only ‘floppiness’ but also his ability to handle the anti-microbial herbs.” (She was responding with my terminology. I’m pretty sure that “floppiness” is not a real medical term.)

At the time, Martin had been off target mitochondrial support for a few weeks; we use MitoSpectra, and I was unhappy that our supply of pills had gone bad. I looked into MitoSynergy but decided against it, because its components did not seem to be in bioavailable form, e.g., it has standard B6 instead of p-5-p, and folic acid instead of 5-methyl folate or folinic. I also thought about giving Martin the mito-support elements separately: levocarnatine, CoQ10, B-complex. On the other hand, Martin takes so many pills and drops already. Where possible, it reduces the protocol burden to use combined forms, even if the combined forms tend to be more expensive. And blah blah blah. Meanwhile, Martin was off mito support while I mulled all this.

MitoSpectra’s customer support offered to replace the spoiled pills and told me to keep the next batch refrigerated to prevent them from going bad. After speaking with the biomed doctor, I decided to put Martin back on MitoSpectra. I expected that the mito support would improve Martin’s “floppiness.” I was less certain why the doctor thought that it would help with hyperactivity and overload from the antimicrobials.

It did. Immediately after speaking with the doctor, I took Martin off banderol and reduced borrelogan to just one drop, to start building again from there. That helped. Slight hyperactivity lingered, as did trouble falling asleep, and I worried about starting to build borrelogan again, however slowly. Then the new MitoSpectra arrived, and within a day Martin’s behavior leveled off.

Why? Even after five years of biomed, during which I’ve known that Martin has mito processing issues, I still don’t fully understand how the mitochondria fit into all aspects of Martin’s health. I associate Martin’s mito issues with his lack of energy and low muscle tone; in the earliest days, before biomed, Martin spent continuous hours lying on the floor, usually on his side, usually pushing a toy back and forth or engaging in some other repetitive behavior. We’ve remedied that, and made progress on floppiness and exhaustion. Yet mito issues continue sprinkling their special mischief over Martin’s progress.

Mitochondria organelles are the power plants of human cells. Their job is to turn oxygen and sugar into adenosine triphosphate (ATP), the energy that powers the cells to do their assigned jobs. Mitochondrial disorders, as I understand them, can be extraordinarily serious and can result in complications ranging from undergrowth and developmental delays to seizures. Conventional medical wisdom holds that mitochondrial disease, in the true form, is genetic and incurable, though treatable in ways that may assuage its effects.

According to the CDC, “More research is needed to find out how common it is for people to have autism and a mitochondrial disorder. Right now, it seems rare.” The CDC’s page, I note, has relatively little information about mitochondrial disorder, and much of that limited space is devoted to autism (and, you guessed it, vaccines). The CDC’s need to deny an autism-mitochondria connection makes me suspect that the question is being asked often, and a link in fact is suspected. TACA calls the role of mitochondrial function “[o]ne of the most exciting areas of research in autism spectrum disorder.” Even Autism Speaks (hardly cutting-edge science, in my opinion) offers: “Over the last decade, there has been great interest in the possibility that mitochondrial disorders may underlie some of the symptoms of autism spectrum disorder (ASD). Currently we believe that around 5 to 10 percent of children with autism have mitochondrial dysfunction as the underlying cause of their symptoms.”

Martin has mito dysfunction. That is diagnosed. No question there. So what is the mito dysfunction doing? Why would it cause increased hyperactivity when he’s dealing with antimicrobial Lyme treatment? Maybe cells without a power supply can’t fight the antimicrobial effects like they should. Maybe mito dysfunction keeps the entire system in such precariousness that what should be a mole hill—launching the battle against Lyme—morphs into a mountain. Maybe Martin, even after he functionally recovers, will still need mito support. Maybe he won’t.

The reason I shy from writing about the process of recovering Martin, instead of the victories and setbacks, is fear of admitting how little I understand about that process. (Also, it hardly makes for exciting writing.) I am a humanities-type mom wading through science-y stuff. When I try to write the science, I perceive my own shortcomings.

As of today, Martin is off banderol and rebuilding borrelogen slowly. The hyperactivity has dropped, considerably. Emotional dysregulation, on the other hand, is substantial. Martin is anxious, and having meltdowns.

Despite the mitochondrial support.

Because—who knows?

I Feel Ya. No, I Don’t. I Get That. No, I Don’t

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The day after Thanksgiving, my stepfather and brother and husband—a/k/a Grandpa and Uncle Rudy and Daddy—took Martin to see The Good Dinosaur. Martin, who had seen the movie promoted on Disney Channel and been asking to go, came home all smiles from the theatre.

“Hi, Martin!” I greeted him. “How was the movie?”

“It was good!” he said.

“Did you enjoy yourself?”

“Yes.”

“What was your favorite part of the movie?” I asked.

Martin didn’t hesitate. “My favorite part was when the dinosaur boy’s dad died,” he said, laughing.

“When his dad died? Wasn’t that very sad?”

“Yes!” Martin said, still laughing. “It was sad!”

Confronted with what must have been a tear-jerking scene for the other movie patrons, Martin seemed unable to suppress his glee.

Last month I lost a friend. We weren’t close; we’d known each other in junior high school, and reconnected a few years ago via Facebook, and discovered that we shared interests in fitness, real food, and faith. By the time we reconnected, Jenny was already fighting her second bout with breast cancer. I knew that she was in and out of chemotherapy and making frequent doctor visits. Yet, to me, her cancer never seemed present or imminent, because I never saw her in person and because her Facebook posts were always upbeat.

One night, just before I went to bed (alone; Adrian was away on business), I checked Facebook and saw that another user had just tagged Jenny in a post something like, “Pray for Jenny. She’s gone into the hospital and isn’t doing well.” I prayed for Jenny that night. I didn’t worry too much. She’d been in the hospital before and gone home quickly. Besides, her status updates that week had been banal: She loved her new juicer. She was considering seeing a doctor a few towns away and wondered whether anyone would like to share the ride. Everyday stuff.

Jenny must have been on my mind overnight, because when I woke around 5:30 a.m. I checked Facebook again immediately. During the early morning hours, a different user had posted, on Jenny’s wall, something like, “Jenny’s been taken off the ventilator. Her husband asks for prayers that she passes in peace and they can grieve.”

Only days earlier, on-line, Jenny had seemed vibrant and untroubled. I decided that “taken off the ventilator” must mean that the doctors wanted to give her the chance to pull through on her own, and she would.

At 7:15 a.m., Jenny’s aunt posted something like, “R.I.P. my beautiful niece. You fought hard.” By that time, Martin was seated at the table eating breakfast, so I set down my iPhone, left the kitchen, and started to speak with Jenny, in case she could listen. I’m glad we found each other through Facebook, and I’m sorry I didn’t realize how advanced your cancer was. I wish I’d realized. I would have said more to you. I would have talked about sleeping over at your house in seventh grade, and some of the crazy afternoons we had in your family’s swimming pool. Remember?

When I returned to the kitchen to finish giving Martin his supplements, I was crying. He noticed (that’s encouraging) and asked me why.

“I just lost a friend. My friend died. My friend died, and it’s making me very, very sad that I won’t see her again, or talk to her.”

“Oh,” Martin said. Then he smiled, giggled, and said, “Your friend died!”

“That’s not a funny thing. It’s something that’s making me sad.”

Martin said, “Okay,” and kept giggling.

It was, fair to say, one of our more—ahem—challenging moments. I stood in the kitchen, still crying, and my son had no response other than to laugh at my grief.

Here’s one whopper of a reason I stick with biomed, with trying to heal Martin from the inside out: You can teach a lot of things. You can teach eye contact. You can teach small talk and germane responses. You can even teach how to mimic emotion. But you can’t teach empathy.

At least not any way that I know how.

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Martin attends our church’s Tuesday after-school program for kindergarten-through-fifth graders. Because the program is volunteer-run, and because I want Martin to participate as fully as possible, I send an aide with him. The aide, Janine, is a special-education professional whose assignment is to ensure that Martin is included, to help Martin with any projects or activities that might otherwise overwhelm him, and to back off whenever Martin is able to handle the situation unassisted. I would accompany Martin myself, except that my presence is nothing but a distraction. When Mommy is in the room, I’m afraid, Martin has eyes for nothing else. Besides, who wants to play with the kid whose mother is hovering behind?

I can’t say that Martin loves going to the Tuesday program. He tries to get out of it whenever possible. (“I’m so tired!” “I don’t feel well!” “Oh, I just want to do my homework.”) Compare that with Sunday mornings, when Martin eagerly accompanies me to church and participates in children’s Sunday school. I don’t know what accounts for the contrasting attitudes. It could be that Tuesday afternoons he is exhausted from school and wants time alone, or that the Sunday school teacher (Sundays he has no aide) lets him get away with only minimal participation. It could be that he doesn’t like having an aide, although he’s never asked to attend Tuesday alone, only to skip the event altogether.

I wrote that verbose introduction to establish that although I am not present at the Tuesday after-school program, I know a lot (through Janine) about what happens there. (Perhaps I got distracted from that point.) Often Janine’s report is super: Martin was asked to light the candles and did so without help; Martin sang along in choir practice; Martin played tag properly in gym; Martin raised his hand and answered questions after storytime. Some weeks Janine’s report is tougher to swallow, such as the two occasions on which no one wanted to hold Martin’s hand during the prayer circle. (He was in the grip of allergies and probably using his hand as a tissue.)

This Tuesday, Janine said that the gym teacher, who usually has the kids count off or otherwise randomly divides them for sports and games, decided to appoint two team captains and let them pick teams. Remember those days from grade-school gym class? Two kids stand up front, pointing to the best athletes first. The chosen teammates join their captains, relieved. I remember well. I was usually the first girl chosen, and I liked that. I also understood why the teachers stopped the process when half or two-thirds of the kids had been picked, and just split the left-overs between the teams. This Tuesday, at the church, the gym teacher didn’t do that. He let the picking go on and on, right down to the very last kid, on and on until only one kid was un-picked, until there was only one kid standing alone, unwanted by either team.

I’m sure you know who that kid was. Take any group of typically developing grade schoolers, mix in one kid with autism, and see who gets picked last.

Martin did not show any overt reaction, Janine reports, but it is always hard to tell what he’s internalizing.

I hate when things like this happen. I hate the insensitivity of an adult who would let that happen. (Next Tuesday I will show up at the church a few minutes before the program begins and explain to the gym teacher, in kind and polite words, the effect of his decision on my son.) I hate wondering how much Martin’s self-esteem suffers from his difference, and the irony that our efforts have improved his awareness enough to know that he’s being left out, but not enough to know how to fit in. I hate wondering whether Martin will ever be fully included.

I also hate dealing with these questions at this time, because Adrian and I are facing a difficult decision. Since kindergarten (he’s in second grade now), Martin has attended a wonderful self-contained special-education school. His class has twelve students, each with autism or some other type of disorder that affects the ability to communicate. The pupils are bright, and they soldier on under the “common core” standards now stamped onto our public schools as widely as vaccination requirements. Adrian and I have realized, however, that Martin is perhaps not being challenged academically; his homework packet takes him no more than ten minutes to complete, and about eight of those minutes are dedicated to arguing with me over whether he can illustrate the homework because he’s bored. Adrian and I have wanted to believe that, even if Martin isn’t challenged academically, at least he has social role models; half the kids in his class have language challenges but no particular social impairments. On the other hand, over the past year, Martin has made enough progress, socially, that he is nearing the level of those social-top-tier classmates. So now what? What is the next level that Martin can reach, if he remains in his self-contained special-education school?

For that reason, we are considering attempting to find a private school, with small general-education classes, that would be willing to let Martin come to school with an aide, at least for the first year or two. Martin might not be ready, yet, to make the jump to general education. Moreover, it would be a one-way street; if we pull Martin from his current school, we will likely lose his placement there, and have no option to re-enroll him. On the other hand, we know that elementary curriculum (public school, or private) becomes advances rapidly in third grade, requiring more drawing conclusions and making inferences. If there is a “best” time to more Martin out of special education, we may be approaching it.

Then I remember what I hate. Even if Martin isn’t challenged in his current environment, at least he’s safe. At least he’s neither bullied nor left standing, alone, when the teams are picked. At least his self-esteem—maybe his most fragile attribute—is padded and protected.

To leap, or to stay safe? Even on that everyday question, autism leaves its mark.

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A&A Part II: Formaldehyde

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When we moved to the suburbs, June 4, 2013, we bought Martin a new bedframe, a twin-size rally car frame. Because of wheels, bumper, and built-in shelf, it occupied more space than the plain, unfinished hardwood frame he’d had previously. In the City, his bedroom was too small for a fancy rally frame; the suburbs have some advantages.

We did not, however, replace Martin’s mattress, which was an expensive organic mattress that I’d ordered two years earlier from California. A bedframe is one thing. An organic mattress does not get replaced so willy-nilly.

Martin never adored the rally bed, even though he and Adrian had picked it out together on-line. I think the metal headboard and side rails were cumbersome. Martin still tends to toss and turn at night, and to throw his limbs over the bedside. I would hear him at night, banging his arms and head on metal. Plus, the metal was cold. I didn’t love the rally bed, either. At the time, I still had to pick Martin up, out of bed, while he was sleeping, to take him to the bathroom or help him wake up. As he grew bigger, it was hard to lift him over the rails without straining my back.

What I did know was that the rally bed was safe. I’d researched the materials of which the frame was made, and the manufacturing processes, and I felt comfortable that they posed no particular dangers.

This June, 2015, Martin decided to break up with his rally car bed. The end of their two-year relationship came suddenly. Martin, for a couple weeks, had been having trouble falling asleep. One night, after an hour or two of talking to his stuffed animals, giggling, dancing down the hall to the potty, and calling for drinks of water, Martin asked to sleep in the queen-size bed in the guest room. I can’t remember whether I acted out of frustration, or exasperation, or hope, or some combination; in any event, I let him climb into the guest bed, and he was asleep within minutes.

The next night, the same scenario replayed. Martin stayed awake, busy as a bee, until finally he finagled permission to move to the queen-size bed in the guest room. The night after that, he skipped the rally bed altogether and asked to do bedtime in the guest room. He also stopped having trouble falling asleep. I don’t know why. Maybe the “trouble” was intentional, a ploy to try a different bed. The explanation he gave was, “Now that I’m almost seven, it’s just easier to sleep in a big bed.” That’s exactly what he said: “It’s just easier.” The little cad.

After Martin had been sleeping, without issue, in the guest room for more than a week, Adrian and I devised a plan. I didn’t want Martin to continue sleeping in the guest room. Unlike his bedroom, the guest room isn’t coated in EMF-blocking paint, isn’t right next to my and Adrian’s room, and doesn’t have his name on the wall in wooden block letters. On the other hand, Martin wanted a bigger bed and seemed to be sleeping better in a bigger bed. His own bedroom, though bigger than his City bedroom, is not wide enough to accommodate a queen-size bed. Adrian and I decided the solution was to offer Martin a double bed for his upcoming seventh birthday, and to bill the gift as a “big-boy bed.” In fact, we would give his bedroom a mini-makeover, changing the Curious George theme to an outer-space theme, because he’s into planets and moons.

(Actually, we offered Martin a list of new room themes to choose: music, outer space, books and writing, Big Hero 6, sports generally, or the New York Rangers. I was pulling for the Rangers. I was silently willing him to choose the Rangers. But it wasn’t meant to be. Martin likes planets.)

A big-boy double bed needs a big-boy double-size mattress, and for Martin it has to be an organic mattress. To make our big-boy-bed plan work, I would have to bite the bullet and shell out a lot of money for a new organic mattress. I found an organic mattress showroom not too far from us, drove there one morning, asked questions, compared choices, and ordered a satisfactory option. I also purchased a waterproof organic mattress cover, for the various mishaps that can occur in a seven-year-old’s bed. Then I set about procuring two double-size organic cotton sheet sets.

By the time all that was totaled, I was not in the mood to spend more money, and I suppose I let down my guard. I ordered an inexpensive bedframe, with storage drawers underneath, from wayfair.com. It arrived quickly, and with Samara’s help, I spent three days assembling the thing. (Adrian has myriad talents. The use of tools and hardware is not one of them.) The new organic mattress came just in time for Martin’s birthday. I filled the bed’s drawers with Martin’s stuffed animals, covered the mattress in organic sheets, switched the Curious George wall decals for outer-space wall decals, and hung up posters of the planets and moons. Martin loved his birthday gift. He immediately moved from the guest room back into his own outer-space room, into his new big-boy bed. That was at the end of June.

Martin’s allergy troubles began in earnest over the summer. As part of our search for answers, I asked our environmental consultant to check for mold, mildew, or other triggers to which Martin might be responding. Almost immediately, he found elevated levels of formaldehyde in Martin’s bedroom. Formaldehyde! It seemed to emanate from—did you guess this?—the cheap bedframe I’d bought online after spending so much on the organic mattress and linens. Martin has been exposed to formaldehyde. Way to go, me. Worse still, the consultant theorizes that the expensive mattress may have absorbed enough formaldehyde from the frame to pose an ongoing problem.

As soon as my parents, who are visiting from Texas, depart, Martin is moving back into the guest room and I’m throwing away—yes, throwing away, because although my first choice is to donate, I refuse to pass an unsafe product to any child—the bedframe. The double-size organic mattress will move to the basement in the hopes that it can air our enough to be safe again. (We have a well-ventilated basement with windows.) This time I will do my research and spend the money on a truly safe wooden bedframe, then have the organic mattress retested and hope it has become salvageable.

Remember the organic twin-size mattress that we brought with us from the City, the one that was on the rally bed? I didn’t have the heart to let that mattress go. It was too expensive. In my office I have a daybed with a trundle. I moved the twin-size organic mattress onto the trundle frame, under the main bed, thinking that we might one day put it to another use. Then my cats discovered that they could crawl underneath the daybed cover, onto the trundle mattress, and be tucked into their own flat cave between the trundle and the main bedframe. Before I even pinpointed to where the cats were disappearing hours at a time, they had left so much fur on the twin-size organic mattress that I wonder whether it will ever be suitable for humans again.

Way to go, me.

Martin doodled this on a homework sheet. I can't be sure, but I'm hoping it's some sort of representation of Henrik Lundqvist.

Martin doodled this on a homework sheet. I can’t be sure, but I’m hoping it’s some sort of representation of Henrik Lundqvist.

Afterward

Posted on by findingmykid
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It’s 3:25 a.m. Obviously, I’m awake. Jet lag. Adrian and I are on vacation in Turkey (far from Ankara, where the horrific suicide bombings occurred Saturday), celebrating our anniversary. Martin is home with my parents.

As I lie awake, my mind wanders to this question: What will I do with myself when Martin is recovered enough to be close to typical? This autism journey has consumed my life. What will be my next act?

These types thoughts tend to happen on vacation, when for a change I’m seeing the forest, not focused on the trees like dinner tonight, ordering supplements, planning travel to doctors, trying to keep current on science. Twelve months ago, in a post started on vacation in Germany, then finished back home, I wrote about finding the “me” in Martin’s recovery, about trying to have some life of my own. I have been improving at that, writing more (non-blog) and working 20 hours per week. Still, bio-med life feels like a treadmill. Pauses are rarely allowed.

I don’t know what my next act will be.

But I’m looking forward to it.

Istanbul. This scenery, giving me pause.

Istanbul. This scenery, giving me pause.

Leave It. Not the Yes Song That I Love. A Different Kind of “Leave It”

Posted on by findingmykid
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I am compelled to write again on the topic of guilt.

I’ve acknowledged before that I feel guilty for my son’s autism. I know I’m not alone. The Thinking Moms’ Revolution ran a post on this topic last year, titled “How I Gave My Son Autism.” That post exposed a reality: Many mothers, when they find out the health conditions that underlie autism and the environmental factors that may trigger them, feel guilty for not knowing more, for not doing more to prevent autism from invading their children’s lives. I am one of those mothers.

I am also tired of defending my right to feel guilty. Here’s a simplified version of a conversation I had this week:

Friend:

“Why don’t you weigh in publicly on some of these debates, like vaccine safety or antibiotic use?”

Me:

“They are tough issues, and I feel like everyone is so polarized and aggressive. I need my strength to recover my son and don’t want to spend it on defending myself.”

Friend:

“You’ve learned a lot, though. Why not share it?”

Me:

“Someday I will, when Martin doesn’t need me as much. Now is not the time. Understand also—all that I know now figures into the guilt that I feel for what I didn’t know when Martin was a baby. It’s painful for me to share that.”

Friend:

“Wait! You know you shouldn’t feel guilty, right? You know it’s not your fault that Martin has autism? Tell me that you know that.”

This issue arises constantly with well-meaning persons who are not biomed parents. They hear that I experience guilt, and they rush to reassure me that I have nothing to feel guilty about.

While I can’t fault anyone for wanting to make me “feel better,” random reassurances that I bear no guilt don’t make me feel better. They upset me. I know things. These things make me feel guilty. I have this feeling. I have a right to feel it. The emotion is mine to resolve (or not) on my own terms.

Biomed parents get it. When I speak with another biomed parent about feelings of guilt, the response is usually something much closer to, “I get that. How are you coping? Want to brainstorm ways to channel that into positive action?”

We don’t get to walk around telling people what emotions they should or shouldn’t feel. I, personally, become uncomfortable when a mother says that her child’s autism is a “gift.” But I don’t respond, “Wait! You know autism isn’t a gift, right? You know you shouldn’t feel like your child is lucky?” I respond, “Tell me more, if you want to.” And then, if she wants to talk, I listen. If she doesn’t, I leave it alone.

The guilt that I feel is not harmful to my relationship with Martin. To the contrary, it prompts me to do my best for him, however I can.

So, please, leave it alone. That’s a good way to help.

Wait—That’s Bad?

Posted on by findingmykid
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In the post about Martin’s disastrous Disney morning, I also mentioned buying him a black coffee, hoping it would help.

In my effort to present an honest picture on this blog, I keep my readers abreast of my application for Autism Parent of the Year. Remember when I started my kid on glasses and Heilkunst the same day, then couldn’t figure out which made him puke? Or when I denied him the chance to connect with a boy at church? How about when I vacationed in Jerusalem while Martin pined and threw tantrums at home? Way to go, me!

Let’s add coffee to the list. Months ago, Martin asked to sample an iced coffee I was drinking. I drink my coffee black: There wasn’t any soy milk or commercial almond milk or carrageenan or whatnot to worry about, so I let Martin try a sip. I thought he would hate the taste. Instead, a practice began, wherein Martin drank my coffee. More and more coffee each time, until finally I was buying him his own black iced coffees and giving him hot coffee at home.

My reasoning? Brewed coffee is GAPS-legal, and the stimulant effect seemed to do Martin well. He seemed more focused. No harm done, right?

Not so much, is MAPS doctor informed me when I mentioned the coffee habit (and convinced her to believe me). A stimulant isn’t really so good for Martin, and I should stop with the coffee, ASAP.

Which was my honest intention, until things ran amuck at Disney. Coffee! I told my brother Rudy. Grab some coffee! It helps!

Except when it doesn’t.