Year 2014 in Review

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

It’s time for a look back at 2014.

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

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

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

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

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

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

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

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

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

Martin rock climbing at a birthday party, July 2014.

Martin rock climbing at a birthday party, July 2014.

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

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

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

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

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

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

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

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

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

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

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

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

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

May it be one banner year among many.

 

Mistake, I Think

In December, the following happened:

Adrian and Martin and I were at the reception following the church children’s pageant (in which Martin sang!). By now Martin and I have attended our new suburban church for 18 months. He goes to Sunday school and, with the help of a facilitator, participates in a 90-minute “Kids’ Klub” each Tuesday. He is reasonably well known, to both adult and youth parishioners.

At the reception Adrian and I socialized while Martin wandered, playing mostly alone and munching the snacks I’d brought for him. I looked for Martin often, because these days he thinks it is funny to try to sneak non-GAPS-compliant food. (When he finds me milling around the Sunday refreshments, keeping watch, he says, “Mommy, just go talk to your grown-up friends. I’m fine.”) In one such glance I saw Aiden, a seven-year-old, approach Martin with a big, soft, definitely gluten-and-sugar-and-dairy-laden cookie. Aiden broke off a cookie chunk and said, “Hi, Martin. Have some of my cookie!” Martin seemed interested, but he hesitated and looked around for my assurance.

So what did I do?

Here are the relevant factors:

  1. I was thrilled that Aiden had approached Martin, spoken to Martin like he would speak to any kid, and kindly offered to share his cookie. Thrilled.
  1. I wanted, so badly, for Martin to take that cookie. I wanted him to have a typical-kid moment, and a meaningful interaction with Aiden. Maybe they could be friends.
  1. I wasn’t that worried about the cookie. It would be an infraction, to be sure. It would set back our efforts to heal Martin’s gut, and it might cause some crazy behavior. But we would get past it. (See infra.)
  1. What worried me more was that Martin would get the impression that, on a special occasion, it is okay to take a cookie chunk, or whatever else is offered. Martin already has declared that he is allowed to drink apple juice from a box at birthday parties (effin’ birthday parties!), because once, in the throes of his disappointment, I relented and allowed a juice box. Give him an inch…!

So what did I do? What did I do?

I intervened.

I said, “Martin has food allergies! He can’t have the cookie. But thank you, Aiden! Thank you so much for sharing. What a great choice!” Aiden looked surprised. Then he left Martin alone. In a lame attempt to salvage the moment, I told Martin, “I’m so happy that you checked with me. Would you like an orange? I can peel you one.”

Inside, I felt icky. I felt like I made a mistake.

Did I? I think I probably did. I should have let Martin and Aiden share. I could have talked later with Martin about this “exception” and about how to respond when offered food in the future. I could have asked him to track how his tummy and mind felt. I could have created a hands-on lesson or done role-play. I could have ignored, i.e., pretended that I didn’t see Martin looking for my assurance, and allowed him to do what he wanted, and only later “noticed” what had happened, so that at least the cookie-share wasn’t officially mommy-sanctioned.

I could have, should have, blah, blah, blah. Whatever I could or could not have done, what I did do in the moment was deprive Martin of a typical-kid interaction and of maybe (dare I hope?) the path to a new friendship.

The teachable moment, it seems, was mine alone.

P.S. As long as I’m confessing mistakes, and along the theme of “we would have got past it,” I think I’ll subjoin this little divulgence: We have been taking Martin to children’s (“family”) movies. A lot of the time, Adrian takes Martin, and I get a pass, because try as I might, I just don’t enjoy feature-length animation. (Leave me alone. My oldest brother, Rudy, is an animator. He’s asked me all the pertinent questions. No, I didn’t like Aladdin. Nor Toy Story. Nor Cars. Nor even Fantasia, too much, at least not when sober.)

One recent movie I did attend, because it was live-action, was Alexander and the Terrible, Horrible, No-Good, Very Bad Day. In the theater I purchased a Diet Coke®. I know I should be healthier, and I have done really well curbing my Diet Coke habit, but occasionally, for whatever reason, I still drink a Diet Coke. Attending a matinee showing of Alexander and the Terrible, Horrible, No-Good, Very Bad Day, on a rainy afternoon, when every kid in our suburb seems to be at the movies, qualifies as such a reason. Halfway through the movie, I went to the restroom. I returned to find Adrian, with an are-you-kidding-me? look on his face, restraining Martin on his lap. Apparently, when I left, Martin picked up my Diet Coke and drank most of it. That’s right. My GAPS-diet son, who has consumed neither processed foods nor refined sugar in four years, went to town on motor oil and aspartame. Just one more endorsement on my application for autism-recovery mother of the year.

Bad Day. My Bad

Last Sunday—a week ago now; perhaps the trauma has kept me from posting this confession?—was a bad day for me and Martin. The fault was mine.

Looking back, I suppose the stage was set on Saturday.

No, wait. It was Friday. The bad day that was last Sunday actually began on Friday.

Samara put Martin to bed Friday evening, 7:00 pm, without incident. Adrian was traveling, and I was dining with friends who’ve recently relocated to New York. I’ll call them, à la Martin, “Uncle Donny” and “Uncle Brian.”

I arrived home around 11:00 pm Friday, hoping for a good night’s sleep. With Adrian out of town, I’d made plans for a day trip on Saturday; Uncle Donny and Uncle Brian were to accompany me and Martin to Stuart Family Farms and then to lunch in Connecticut. At midnight I snuck into Martin’s room for a detox therapy, managed it without waking him, and dozed off in my bed.

I slept a pleasant hour before the night tanked. Martin woke at 1:40 am and could not close his eyes again until 6:00 am. At 8:00 am I did detox therapy again, almost hoping to wake him. We had planned to leave at 9:00 am for Connecticut; that hour passed with only snores from Martin. I decided to pack a breakfast and most of Martin’s morning supplement routine in a to-go cooler, along with the lunch I’d assembled Friday. At 9:30 I called Uncle Brian and declared that, come hell or high water, Martin and I would be on the road in 20 minutes. Then I woke and dressed Martin, pushed the most crucial morning supplements into his mouth, and hustled him to the car.

Would that be the dawn of the worst day ever? Hardly. There’s a pattern I’ve noticed: When Martin has a bad night—and in all honesty, we’ve seen a lot of bad nights lately, more than we used to—the next day does not reflect his sleeplessness. He’ll be drowsy, maybe mellower than usual, but sharp and agreeable.

And so it was on Saturday. Uncle Donny sat next to Martin’s car seat and helped Martin devour the to-go breakfast and supplements, which Martin gamely accepted. En route to Bridgewater Martin chatted; at the farm he delighted in chickens and pretended to water some grass; at the lunchtime diner he played quietly in our booth, then accompanied Uncle Donny to check out the fish tank.

Predictably, though, on the way home he fell asleep for almost an hour. From clapping to singing to insisting we’d soon hit the RFK Bridge (his favorite), nothing would rouse him. And an hour’s nap in the car makes bedtime a nightmare, so that instead of sleeping at 7:00-ish, Martin needed until 9:30 pm to doze off. And a late bedtime invariably prompts an early wake-up, so that instead of achieving his preferred eleven-and-a-half-to-twelve hours, Martin sprang up at 6:30 am, after just nine hours.

And then there’s the fact that, no matter what, Martin’s second day after a sleepless night is worse than the first. Martin didn’t sleep Friday night. Sunday was bound to suck.

We were late for church. Despite being up since 6:30 am, somehow we couldn’t get out the door before 11:00 am. (“Somehow” in this context means, roughly, “Martin refused to eat breakfast, dawdled with his supplements, cried for half an hour, seized dirty silverware from the dishwasher, and complained when I tried to shower.”) Martin threw a minor after-service tantrum when it was time to quit fooling around with the piano, and again when I made him sit on the potty. I didn’t leave the church feeling spiritual. I left feeling exasperated. Possibly murderous.

When our afternoon plan, hanging at the playground with a friend, fell through, I decided to call it quits and head home. I figured Martin could enjoy quiet activities and I could get some housework done.

Therein lay my error. We were home by 1:30 pm. Between our arrival and Martin’s bedtime, 6:30 pm, spanned five hours. Five hours, I soon discovered, is more than adequate time for a three-year-old to suffer extreme cabin fever and then, compounded by his sleeplessness, to morph into a fiend. By evening Martin had dumped toys twelve feet from our second-floor loft space, emptied the cats’ water fountain onto the hardwood floor, opened the valve on our Berkey countertop purifier to flood the kitchen, unfurled half a roll of toilet paper into the toilet, climbed the cat tree, refused to complete even a single HANDLE or RDI exercise, and pitched multiple crying fits.

Amidst this naughtiness Martin was also attacked by autism symptoms, the kind we used to see constantly but that now strike only at tired, stressful moments. He ran back and forth. He lost coordination and eye contact. He repeated my words, if they provoked any response at all.

I found myself—and this is not easy to admit—in the most deplorable parental state I know: counting the minutes until Martin’s bedtime, and annoyed by behaviors I know he cannot control.

It was not a satisfying day for either of us. Martin was frustrated by boredom and fatigue, and I by my hapless responses to his conduct. I spent the afternoon saying no!, enforcing time-outs, and wanting to ostrich my head.

Martin slept well Sunday night. I planned an after-school activity for Monday, and by Tuesday we were back on track.

But the memory of Sunday haunted me, and so I assembled a list of lessons learned. I must prepare for days when I know sleeplessness will be a problem. Preparation means a plan, and a back-up plan, and a last-ditch plan. If I wouldn’t expect Martin to spend an afternoon doing nothing on a good day, I’m a fool to expect it on a bad day. When I saw his behavior hitting bottom, I should have cut my losses, taken him out of the house, and headed for the nearest playground. Or at least in his stroller for a walk. Maybe for a green juice at the organic restaurant, or any treat. I cannot let my own fatigue ruin a precious afternoon with my son.

The bad day was my bad. I own it. I’m grateful that there’s always tomorrow.