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.

Other Stuff, Not Autism

I received another one of those emails. I’m talking about emails that come from someone who knows me and who, because of distance or busy schedules, keeps up with my life primarily through reading this blog. Such emails teach me that readers of this blog see me as a stressed-out, sleep-deprived robot obsessed with her son’s recovery. Maybe not quite that dramatic—but close. This email came from a family friend in Germany. I’m going to apologize now, in advance, to that friend about the poor state of my German-English translation skills, and then translate nonetheless. The email states, in part:

So now and then I read your blog about autism, what you write about yourself, how tired you are. I know the way your days go, and I ask myself how long you can endure this stress. You have taken very, very much upon yourself. “I do everything to make my child healthy.” I know, also, your perfectionism. I’m going to render a diagnosis from afar: burnout. You know I’m no psychiatrist, just a woman who knows what exhaustion feels like. In Germany you’d be sent off to mother-and-child Kur. I don’t want to give you advice, just the benefit of my experience: Let go of some of your perfectionism, and maybe loosen up some of the deadlines. Just do the best, not the absolute best.


Here’s the deal: This blog is all about autism, my son’s recovery, and the work entailed in that recovery, because… well, because this is a blog about my son’s recovery from autism. It is not a blog about my life. Martin’s recovery occupies a huge chunk of my time, as it has for the past four years. Martin’s recovery, however, is not my whole life. If I were to write a blog about my life (my fabulous, glamorous, ceaselessly fascinating life!), then my readers would know that, in the past seven days, I did the following:

  • Attended a wine-and-food-tasting fundraiser for Martin’s school, at which I fielded many, many text messages expressing anger that I was not watching Game 4 of the RangersPenguins series, texts like, “A fundraiser? Are you kidding? Write a check, get out of there, and find a television”;
  • Attended a fundraiser for ovarian cancer research, before which I discovered that the dress I wanted to wear, which I had purchased at a boutique located more than two hours from home, still had the security tag attached, meaning that I had to beg local stores, dress and receipt in hand, until I found a clerk with the correct machine to remove that particular tag;
  • Attended a fundraiser for our town’s parent resource center, and left early, accompanied by Adrian, to drive to our favorite bar and watch Game 5 of the Rangers-Penguins series;
  • Re-watched, the afternoon following the live event, Game 5 of the Rangers-Penguins series, while texting with my cousin, who was also re-watching Game 5, about what losers we are for re-watching a hockey game just to relive the glory of the Rangers’ win;
  • Planted the early green leafy vegetables, including kale and arugula and spinach, in my garden boxes, “assisted” by Martin, and repotted Easter lilies from church;
  • Had dinner with Adrian and Martin at a new restaurant, where the server complimented me and Adrian on our son’s excellent table manners (squee!);
  • Rode my bicycle eight miles, round-trip, to Weight Watchers to find out that I gained 1.7 pounds last week, whereupon I cursed all those fundraisers and devised a new motto, “Wine is for the weekends”;
  • Enjoyed a Monday-evening dinner with the other moms from Martin’s playgroup and completely disregarded my new motto; and
  • Worked, a lot, at my flex-time legal job.

Sure, I also spent hours upon hours in the kitchen, making cauliflower tortillas, walnut taco filling, veggie meatballs, bone broth, fermented coconut water, garlic fish marinade, almond-zucchini muffins, a new cookie concoction I devised from sprouted buckwheat and coconut. (You guessed it: Most cooking happened while hockey played on the television.) I escorted Martin to piano lesson and gymnastics, emailed with his biomed doctor, organized supplements, got him measured for new orthotics, and completed daily vision exercises.

I did the autism stuff, and I did other stuff. I had a life.

For the most part, I’m well-rested these days, along with optimistic for Martin’s recovery, content to be lawyering (a little) again, and—dare I say it?—happy.

I’d write more about my everyday non-autism-related life, but I’m not sure my readers could stand the excitement. So I’ll stick to writing about autism recovery, and hope you’ll trust that, indeed, there is more to me.

Beautiful, Terrifying

Here are two situations I’ve encountered recently:

At the music school again. I’m in the waiting area, with my laptop and four other adults, while Martin takes his piano lesson. A woman enters, accompanied by a teenager and a younger boy, maybe eight or nine years old. All three look alike; I assume these are a mother and her two sons. The mother approaches the front desk with questions about lessons and fees. As she talks to an employee, for a while, she turns her back to everyone else.

Immediately I see that her younger son is on the spectrum. He’s holding a small electronic device, a video game, close to his face as he paces urgent, long-stride circles, humming. He plops to the ground and focuses intensely on the video game, tapping the screen with his thumbs. He rises and recommences circling.

The teenage son, meanwhile, settles into a sofa and starts studying some sheet music. He appears comfortable with the situation, and not embarrassed by his brother. In fact, the teenager looks as if he could be a special-education professional. Magically, his eyes are on both his sheet music and his ASD brother. When the younger boy breaks his circle pattern and bolts down a hallway, the teenager follows him. They return seconds later, the teenager guiding and redirecting to the video game. When the ASD boy intensifies his pacing, then begins to disrupt objects in a sensory-seeking manner, the teenager calmly collects him in his arms and brings him to the sofa, cradling him in all-over pressure. Not once does the mother even have to divert her attention from the employee with whom she’s talking—although she, like any special-needs mom, must sense all that’s transpiring behind her.

After five minutes, the mom settles her business with the front desk, and the teenager’s music lesson is ready to begin. Before he heads off with the instructor, the teenager makes eye contact with his mother, so she knows he’s passing his younger brother’s safety to her.

It’s like watching a master-class in family ASD management.

In Texas, at an indoor playground. It’s Easter Sunday afternoon and Martin is antsy, so my brothers and I bring him to an indoor playground. Martin removes his shoes and dashes into the climbing structure, a sort of gigantic, netted jungle gym. I sit with my brothers in an ample lounge surrounded on all sides by the jungle gym.

Two men enter. They look cool. Super-cool. Sunglasses. Ample, sculpted chests, pecs, and biceps, visible under fitted polo shirts. Nice jeans and shoes. Okay, I’ll say it. They’re handsome. They have four or five children with them. I’m not really sure how many, because my attention goes directly to the one with autism. From his face, I’d say he’s ten or eleven years old, but he’s almost adult-sized. He’s tall and, like many ASD kids, with their gut problems and food issues, he’s overweight. He’s not looking at anyone, or speaking. The other children store their sneakers in the plastic cabinets set up for that purpose. The ASD boy tugs off his sneakers and leaves them on the floor. The kids disappear into the climbing structure.

The taller of the two men, in a white shirt, seems to be the one in charge of the ASD boy. I guess that he’s the boy’s dad. Almost without a pause he scoops the abandoned sneakers and tucks them in a plastic cabinet. The two men take adjacent chairs and begin talking. They seem like good friends. I’m too far away to hear what they’re discussing.

I imagine it’s the New York Rangers, because really cool, handsome men everywhere, even in Texas, like to talk about the New York Rangers.

After some time the ASD boy emerges from the jungle gym. He seems confused until he spots the two men, then runs to them and climbs onto his dad’s lap. The boy is so big that he looks absurd perched on a lap, like a teenager or even a small man curling his body onto another’s. His dad, Mr. Super-Cool, Mr. If-We-Were-in-Any-Other-Setting-I-Would-Take-Him-for-a-Childless-Playboy, continues talking to his friend while wrapping one arm around his son and using the other hand to rub the boy’s scalp. He betrays no hint of feeling awkward about the 150 pounds of kid smooshing his quads. He continues rubbing his son’s head until the boy springs to his feet and scampers back to the jungle gym.

The super-cool guys and their charges leave before we do. (My brothers and I, in tandem, are lazy caregivers. While Martin plays, for more than two hours, we’re sipping coffee and teasing each other, destitute of other ideas for filling a holiday afternoon.) As the other kids get themselves ready, Mr. Super-Cool puts shoes on his son’s feet and ties them. They’re nearer us now, and I hear him ask, “You okay, buddy?” Then, probably because his son is not verbal, he answers for the boy: “You’re okay.” They walk out holding hands.

There is a beauty to scenes like this, to a teenage brother forced to mature into vigilance, to a dude with nothing but tenderness for the child who requires more attention than the rest combined. I want to wave my arms and shout, “Hey, us, too! Autism’s got us, too! I’m proud to be like you!” I want to be counted with those who rise so brilliantly to the challenges they face.

Yet I also regret these scenes. Autism is a monster of our own making. Its incidence is rising from some combination (I don’t know which; who does?) of the dangers we humans have unleashed. Chemical concoctions disguised as food. GMO’s. Antibiotics, overused. Electromagnetic fields. Mercury and other heavy metals. Radio waves. Injected toxins. Pollutants. Pesticides. Sure, I admire the caregivers who meet autism head-on. They’re making positive choices. Where is the choice for the children with autism, who need calming, who crave sensory stimulation, who cannot sleep, cannot relate, cannot adapt, cannot ensure their own safety?

And where will they be when the brave and patient caregivers are no longer available?

We’ve got to stop this.

Martin, in the indoor playground, somewhere.

Martin, in the indoor playground, somewhere.

The Case of the Missing Evenings

I have this memory from years ago, autumn 2011 (or so). We still live in the City. It’s late, maybe 11:30 pm, and I’m in bed, in our tight City-style sleeping quarters, propped on pillows as Adrian slumbers beside me. I have my computer on my lap. We are less than a year into biomed. Martin’s sleep has improved, but we still have bad nights. There is a chance that by 1:00 or 2:00 am Martin will be awake, and will stay awake until 5:00 am or later. I should be sleeping. I should be exploiting every moment in which my eyes can be shut.

I’m not. Instead, in this memory, I’m keeping myself awake to write a post for this blog. It’s not a lone memory, either. It’s an amalgam of moments, dates, times. In those early days of recovering Martin, I managed amazing feats of strength. I worked nearly full-time, I spent five or six hours a day creating menus and procuring and preparing food, I tended to Martin throughout the night, I got by on three or four hours’ sleep, I lost 39.8 pounds. (The 39.8 pounds I lost intentionally. Thank you, Weight Watchers.) And I blogged. What little rest wandered into my grasp, I forewent in order to write.

I’m not the only one. Every day, autism parents do what I’ve just described, and more. Every day, autism parents work, and wade through biomed with two, three, four kids, distant families, unsupportive co-parents, financial concerns that I’ve never faced. Every day, the community that I’ve come to know along this journey reminds me that my struggles, while monumental to me, are but stumbling blocks. I am so fortunate.

From that memory, of me, awake, pounding out blog posts on the near and far sides of midnight—from that memory, fast-forward to now. Martin, virtually without exception, sleeps through the night. I sleep, too. So much more than I used to. I’ve declared 2015 to be a year of taking care of me, and Proyecto Numero Uno is sleep. I’ve rearranged my schedule to make sure I sleep. I used to tuck Martin into bed and then begin chores: preparing Adrian’s and Martin’s lunches, straining broth, baking grain-free muffins, cleaning litter boxes. I’ve become hyper-vigilant about incorporating those chores into my day. Most weeknights I’m in bed by 9:30 pm, not long after Adrian gets home from the office, and asleep by 10:30, and not up until 5:45.

Yet I’m tired. Not bone-tired. Not like in the early days of Martin’s recovery, when I avoided sitting down during the day, because anytime I was off my feet I might fall asleep inadvertently. But tired. More tired that I should be (I think) when I’m getting between seven and eight hours’ sleep per night.

I have several theories on why I might be tired. I think it’s possible that, after years of laboring long hours for Martin’s recovery, and sleeping only when his restlessness allowed me to sleep, I’ve fatigued myself to the point that my own recovery will take more than a few months’ adequate rest. My body may still be readjusting to getting a full night’s sleep. I’ve read also about caregivers’ exhaustion. The situation with Martin is so much better, and easier, these days. Still, making sure his needs are met, completing the work that biomed and homeopathy and therapy require, and worrying about his future take their toll. On the other hand, maybe I’m more relaxed because I can see how well he’s doing. Maybe I’m no longer surfing adrenaline from 5:00 a.m. till midnight. And what if I just need more sleep than I once did? What if I need nine hours now? I was 38 when we started recovering Martin. Currently I’m pushing 43. Holy cow, 43! How much sleep do we middle-aged folks need?

Whatever the cause of my tiredness, here’s one effect: My evenings are gone. They’ve disappeared. Martin and I have been on vacation this week, at my parents’ home in Texas. I’m working, a few hours per day, at my new home-based legal job. Other than that, I’m not doing much. Taking Martin to the indoor playground. Lunching with girlfriends. Challenging my brothers (also visiting) to Scrabble. Losing to my mother at cribbage. Yet, my writing is stymied, because I get to writing in the evening, and then the desire is gone. I mean, the desire to do anything non-trivial is gone. I toy with a crossword puzzle, deal some cards, eat popcorn, search Texas cable fruitlessly for a New York Rangers game, go to bed.

It’s the same story back home in New York. Once Martin is in bed, I’m done. I don’t have any creativity or energy for writing. Even a simple leftover task like emptying the dishwasher seems to take twice as long as it once did.

Scheduling has become more important than ever, because what’s going to get done has to get done before Martin gets home from school. From the time he arrives until bedtime, we have afterschool activities (personal training, church kids’ club, piano lessons, gymnastics, playgroup), homework, detox bath or sauna, vision/integration exercises, and dinner. That means my day, for everything else, spans only from 8:00 am, when Martin boards the school bus, until 3:30 pm, when he arrives home (except Tuesdays, when I leave home at 2:00 pm to pick him up for church). Seven-and-a-half hours for gym, blogging, lawyering, household tasks, grocery shopping, and cooking. The one task I do try to manage at night is to jot down an outline for the next day, an attempt to make it all fit. Even if the outline doesn’t hold, at least I’ve got something to shoot for.

I miss the evenings, the productive evenings.

Epilogue: Of course, there are exceptions. Tuesdays and Thursdays I have help from a sitter. If the Rangers are playing in the Eastern or Central time zone, I don my #30 Henrik Lundqvist jersey, head to a local pub, set my laptop on the bar, and eat dinner while blogging and watching hockey. It’s kind of a tradition by now—“Ah, my sweetheart’s here,” says Jimmy the bartender, in brogue, when he sees me enter. “The Rangers play tonight, do they, love?” At the pub, with my Rangers, I’m in my blogging zone, disrupted only by the occasional drunk who just can’t accept that a chick alone in a bar watching hockey with a laptop actually wants to be left that way.

Going First

Time for another confession.

Here goes:

When I’m traveling with Martin, I pre-board airplanes.

It is absolutely and wholly unnecessary for me and Martin to pre-board. Martin is fine waiting in a slow procession down the aisle. He settles quickly, and once handed an iPad and earphones, utters hardly a peep in flight. Although he used to get agitated by sitting next to other folks, and sometimes delay the boarding process while I negotiated to get him comfortable, that anxiety has more or less passed. We do not need to pre-board.

Nevertheless, we do. I tell the gate agent, “Would it be okay if we pre-board? My son has autism, and it’s easier if we enter an empty airplane.” I speak quietly, so that Martin can’t hear me; he doesn’t know what autism is, or that he has it. I imagine maybe the gate agent thinks I speak quietly because I don’t want the other passengers to know my son has autism.

Ha! fooled you! I’m probably never going to see these people after this flight. Who cares what they know? In fact, they should all hear that Martin has autism, and see how well he’s doing. Biomed evangelism.

Technically, I’m not lying. My son does have autism, and it is easier to enter an empty airplane. I mean, who doesn’t like to get on first? There’s ample space for our carry-on bags. We have time to arrange our little nests with iPads and laptop and water bottle and snacks. I have a few minutes to pray, as is my habit before flying.

I wonder what I would do if a gate agent asked, “Is that really necessary?” I wouldn’t lie outright. Probably I’d have to respond something like, “Necessary? Well, no. It isn’t necessary. But it sure is easier.” Then I’d smile, and probably be allowed to get on first.

I do ask myself whether my requesting consideration might make travel more difficult for families who really need it. If I ask for pre-boarding and the gate agent watches my calm, chatty boy board without issue, will s/he be more likely to refuse future requests? As more and more children are diagnosed with ASD, hyperactivity, sensory processing issues, and obsessive-compulsive disorders, am I contributing to an indifferent attitude of, “Yeah, yeah. Everyone’s got a sob story”? (Someone actually said that once, to a fellow ASD mom I know, as she tried to explain why her son needed to get in the pool even though they arrived late for swim lessons.) One indicator of my ambivalence at the airport is that I do not ask to pre-board if any child in the waiting area appears higher-need than Martin. If I see a caregiver dealing with bolting, or meltdowns, or overt anxiety, I’m going to let that group take the special privileges. All the special privileges. Then I’m going to make them think I’m weird as I hover close by, looking for ways I might assist.

Why do I request to pre-board airplanes at all? I suppose I do so because autism is a pain in the ass, and autism recovery is this overwhelming process, and my family has to fight constantly, has to fight school boards and insurance companies and even doctors just to receive services to help Martin, and I figure that, once in a while, in this one little instance, the world can do us a favor. It is what it is.

And of course, no gate agent ever has challenged me. I’ve daydreamed that “autism” could be a magic word. Sometimes, voila! When Martin and I flew overnight to South America in February, our assigned seats were across the aisle from each other. As I waited in line to talk to the gate agent at JFK, I heard her tell the passengers before me that the flight was full, and that no seat changes were possible. She told me the same thing, and added that, when it comes to traveling with family members, being seated across the aisle from each other is considered being seated together. I leaned across the counter and said quietly, “My son has autism.” Oh? The agent immediately took our boarding passes and started typing into her computer. A minute later she said, “It looks like I can get you seats directly next to each other, after all,” and handed me new boarding passes, 22 rows forward from our original assignments. They were “economy plus” seats, she explained, but we would not be charged the extra fee.

“Thank you so much. You’re very kind,” I said. “One more thing—would you mind if we pre-board?”

Martin, rock climbing this week. Honestly, he's fine in the air. (Wink and nod.)

Martin, rock climbing this week. Honestly, he’s fine in the air. (Wink and nod.)