Recovery To Go

We’re on an airplane. I’ve drafted blog posts on airplanes before. Since his autism diagnosis four years ago, I’ve traveled with Martin from New York to South America (usually to Adrian’s country of origin), California (where my brother lives), Texas (where my parents live), Illinois (often, for doctors). Now we’re on our way to Germany, where I have family, and starting with a side trip to Austria and Slovakia.

“That seems like more trouble than it’s worth,” said a German friend when I told her our plans. “You’ll have to haul his pills everywhere and spend your time finding his special food. Who knows how much he’ll even understand, or remember?”

My friend is right, partly. Everywhere we travel, I tote a massive shoulder bag of supplements, prescriptions, and homeopathic drops. I won’t let the bag be x-rayed, so crossing airport security can be an hour-long exercise. (This trip, it wasn’t. The TSA agent at JFK left all the bottles in the bag, ran a swab or two, asked a few questions, and let me through in less than five minutes. I suspected she must be a mom.) As soon as we arrive in Vienna I will search for organic groceries. We stay in hotels with kitchenettes so that I can cook Martin’s meals and broth. I have organic chicken sausages nestled with an ice block in a cooler-lunchbox that I’ve tucked into Martin’s pajama supply.

Despite my best efforts, Martin will go without some of what he gets in the States. Ashwaganda, for example. The new supply didn’t arrive in time. Or camel milk. I couldn’t find a reliable source for raw camel milk on the go. I didn’t even search that hard. It felt futile. Plus, Martin will have to deal with jet lag, uneven sleep times, unfamiliarity. No way he’s going to be at his best. We’ll lose some recovery ground.

So—why? Why drag Martin across Europe? Why not take an easier vacation, or do a staycation, where I can control Martin’s environment?

I guess it comes down to me and Adrian surviving this autism thing, however long it lasts.

To be sure, there are more kid-friendly vacations. We have lovely beaches and camping venues within driving distance. But I don’t like the beach, and neither does Adrian, although we enjoy hiking, neither of us knows how to camp. For better or worse, we travel more on the “seeing culture” model than on the “relaxing with nature” model. And for better or worse, Martin is our son. Until his independence, the family model is his model.

We could leave Martin home. We’ve done that. Adrian and I went to Israel without him, and to Montreal. On the other hand, we’re a family. I want to share with Martin what I love (hockey!), even if he doesn’t get it yet. Adrian wants to share with Martin what he loves (um… the Vienna Philharmonic, dead composers’ birthplaces, and tragic battlefields, I guess), even if Martin doesn’t get it yet.

We’re parents, after all, and as parents we want Martin to have the experiences that might stick with any kid. Some, he obviously enjoys. Rock climbing. Concerts. The Lion King. Disneyland. Others, we push the envelope more, like when Adrian and I wedged Martin between us on a jet-ski and gunned it to max speeds. Or roller skating. What a disaster! Martin looked like a Looney Tunes character running. Finding fun is trial-and-error for any family. Autism takes so much from us already. Why should we have to be the only family that doesn’t distress the kid once in a while?

Now we’re on a train, from Vienna to Munich. I wish I could write that Martin is observing the placid Austrian countryside, remarking on the farmhouses and windmills. Alas, he isn’t. He’s wearing earphones and playing Garage Band on his iPad. More honestly still, he’s stimming by playing single notes repeatedly. He had a rough few days in Vienna and Bratislava. He is tired, floppy, whiny, unfocussed, and doing his best to make our lives miserable.

Nice try, Martin! Our lives are not miserable. We had a lovely time sightseeing yesterday in Slovakia, where I learned, from T-shirts, that Slovaks are living under a delusion. Apparently they think Marián Gáborík (I just learned that his name has accents!) is “the King.” I always liked Gáborík, and to be sure, he is “a King,” in the sense that he plays now for the Kings. But he isn’t the King. That’s Henrik Lundqvist. Silly Slovaks. Then we returned to Vienna and had dinner at the Palmenhaus. Without us realizing it, Martin ate a sugary sauce on his fresh-fruit dessert. Ooops! Hyperactivity and stomach distress! Then dinner was so relaxed that Martin didn’t get to bed until 10:30 pm. No wonder he’s a mess today.

Adrian and I liked to travel before Martin was born, we liked to travel before Martin was diagnosed, and we like to travel now. Life goes on, even in autism recovery. ¡Vivan las vacaciones!

Postscript: When we return from Europe, Martin and I are ditching Adrian and heading to the Adirondacks for a week, to share a lake house with my sister and niece. “We’re taking two vacations!” Martin declares; I like him to have time with his cousin, and since he attends year-round school, we have to pack travel into the few weeks he has off. Martin is so much better, these days, at expressing preferences. “What was your favorite part of today?” Adrian asked him after we visited Vienna’s Schönbrunn Palace and its extensive gardens, including a playground. “My favorite part of today was when I played in the sand at the castle playground,” Martin answered. After we leave the Adirondacks, I’ll seek Martin’s opinion on which vacation was better, Europe or the lake. I’ll post the results here.

When in doubt, find a playground. This is Martin just hours after we arrived in Vienna. He doesn't speak German, but it took him no time at all to learn the word

When in doubt, find a playground. This is Martin just hours after we arrived in Vienna. He doesn’t speak German, but it took him no time at all to learn the word “Spielplatz,” which means playground.

Take that, doubters! I snagged all this organic swag, plus some organic chicken, at a Spar grocery store right next to our hotel in Vienna.

Take that, doubters! I snagged all this organic swag, plus some organic chicken, at a Spar grocery store right next to our hotel in Vienna.

Martin has been feeling better since we arrived in Munich. In this photo, he is checking out a fountain in Marianplatz, in the city center. He just tossed in some Euro coins.

Martin has been feeling better since we arrived in Munich. In this photo, he is checking out a fountain in Marianplatz, in the city center. He just tossed in some Euro coins.

Martin, checking out the English Gardens in Munich. The setting was so photogenic that, a second after this, I handed the camera to a companion and jumped into the picture.

Martin, checking out the English Gardens in Munich. The setting was so photogenic that, a second after this, I handed the camera to a companion and jumped into the picture.

Understanding

“Martin’s progress has slipped a little.”

That’s a euphemism for reality. It means Martin is having a crap week.

I write a lot about this topic, I know. When Martin suddenly looks less like a kid on the path to recovery, and more like a kid with autism, when he tanks, when it all goes to pot, when dinner and bedtime just are not going to happen without a glass of wine (for me, not for Martin), I blog. I blog because I owe you the whole story, because it’s cathartic, and because misery loves company. (These posts tend to generate more messages than any others. Need to talk? Have at it: findingmykid@yahoo.com. Or use the comments section.)

Martin had been doing so well lately, right up till this weekend. Saturday we invited a local family over to swim. They have two kids, age four and almost-six. I’ve known this family for about a year, from church. I know the mother better than the father. Halfway through the afternoon, the father apologized to me for not realizing that Martin has autism. He was surprised when his wife mentioned, on their way to our house, that Martin follows a special diet to alleviate autism. He’s seen me helping Martin around the other kids at church. He always just assumed that my son was shy, or nervous because he doesn’t know the other kids well.

Apologizing? Because you see Martin every week and didn’t realize he has autism? Thank you, but really, no apology necessary.

Sunday afternoon we went to a birthday party. Martin willingly joined a game of tag with the birthday boy and a few other friends. Sunday evening Martin was disappointed that Adrian couldn’t come out to dinner with us because he had a conference call. The call finished earlier than expected, and Adrian surprised us by showing up during the entrée course. Martin, visibly excited, exclaimed, “Oh, you came! I’m so happy!” A friend, visiting for the weekend, who hasn’t seen us in several months, remarked on Martin’s uptick in verbal skills.

We rocked the weekend. Then all hell broke loose.

Sunday night Martin had trouble getting to sleep. Monday morning he slipped into unfocussed silliness. Monday afternoon, at a playdate, he cried and stomped for 20 minutes when I refused to say we could get a chalkboard at home. (I’m scared of chalkboards. Better just to leave that one alone.) Tuesday we received a note from school that Martin was acting defiant and attention-seeking, and that he had hit a teacher. (We jumped all over that one. Martin spent Tuesday evening writing an apology to his teachers.) The highlight of my Wednesday was Martin throwing himself onto the Stop-N-Shop floor and screaming, “I don’t want to buy any fooooooooood!” (As a sign of how far I’ve come regarding public embarrassment: I spent that minute or so, while he was screaming on the floor, searching my purse for my grocery list. Where is that list? How could I have misplaced it so quickly? Wait, is that my kid terrorizing aisle 24?) Through all these incidents, Martin’s language skills, so strong this summer, failed him. He repeated himself, went rote, even babbled. And yet, except for sleeping, he hasn’t stop talking since Monday morning. Just talking and talking and talking and talking. Point, or no point. Accentuated here and there with loud, forced laughing.

Why? What transforms a close-to-typical-child weekend into a thought-we-were-past-these-symptoms week?

After three-and-a-half years of biomed, I’m finally getting the hang of recognizing the likely causes of backsliding. This week, it seems, we’re dealing with yeast die-off. Several weeks ago I began seeing the harbinger of yet another yeast flare. I’ll spare you the details of that harbinger; suffice to say, it’s poop-related. Candex, an enzymatic formulation, has been controlling Martin’s yeast. Last week, Martin’s biomed doctor and I decided to increase the daily Candex dose, and I started that process Thursday evening.

Increased Candex leads to decreased yeast. Decreased yeast means yeast die-off. That’s a toxin in the system, almost like alcohol. It can make a kid silly, or angry, or irritable. That’s happening to Martin now. In tandem with these behaviors, the aforementioned yeast-flare harbinger (okay, fine: the unusual poop) is fading.

Yesterday morning I signed on to one of my autism-recovery groups and saw this post from a fellow mom:

We’re on week three of nystatin for yeast. These past five days I’m pretty sure we’ve been dealing with die-off. Behavior has been super hyper, nonstop talking/making noise, fake laughing a lot, not listening at all, emotional outbursts, no attention to tasks AT ALL, itching??

Yes. Yes! I cyber-shouted. That’s yeast die-off. I’m right there with you, sister.

Understanding the physical cause of Martin’s, ahem, “slip in progress” helps me see that the behaviors are not within his control, and indeed that my little boy probably feels as agitated, flummoxed, and eager to alleviate this situation as I do. Understanding the physical cause also helps me see that darling, recovering Martin will return.

Soon.

On Monday's playdate, Martin behaving. Didn't last long.

On Monday’s playdate, Martin behaving. Didn’t last long.