Turn and Face the Strange

Posted on January 29, 2015 by findingmykid

Sorry for my lack of blogging these two weeks. Circumstances got in the way.

Let’s start with last week. I have two fabulous women who assist with Martin’s care. On Tuesday afternoons, Janine—four years ago, she was one of Martin’s EI providers, and she’s been with us ever since—accompanies Martin to our church’s kids’ club and facilitates his participation, then brings him home and does dinner and bedtime. I use the time to write. On game days, I take my notebook computer to a pub to watch the Rangers play. Other days, the computer and I hole up at the town diner or the pizza joint. (When we lived in the City, I wrote at a wine bar. Suburbs change everything.)

Thursdays and Fridays, Martin’s nanny Samara comes. Thursday is “my night out.” I meet a girlfriend for drinks or dinner, or I write. Friday is date night, reserved for Adrian.

Last Tuesday, Janine had a migraine, so Martin and I were on our own. On Thursday, Samara’s husband came down with the flu. She wanted to take care of her husband, and also didn’t want to share the virus, so she stayed home and Martin and I were on our own again. And when I say “on our own,” I mean it. Adrian was skiing in California. You’re welcome, Adrian.

What about the daytime? you ask. Why didn’t I blog while Martin was at school?

Well, on Monday the dishwasher went kaput. That might not sound all-encompassing, so keep this in mind—on an average day, I run the dishwasher three times, and every load is full. That’s right. Around 9:00 a.m., I run the dishwasher with the breakfast dishes, any pans leftover from the previous evening, coffee tools, cat dishes, and whatever bowls I’ve used to assemble quick snacks. Mid-afternoon I pack the appliance with the utensils I’ve used to prep dinner (1:00-3:00 are my sous-chef hours) and assemble Adrian’s lunch for the next day, my own lunchwares, more cat dishes, gym water bottles, and the et cetera that clutters my counters, like flower vases, kombucha vats, gym water bottles, juicer parts, and (every second or third day) broth pots. Before bed I load the thing again, this time with dinner cooking vessels, dinner dishes, the bowls and utensils I send to school with Martin, more cat dishes, bakeware from muffins and grain-free breads, and glass storage containers emptied from the fridge, which are many because I will not waste food given by an animal.

If that array makes your head spin, then picture me washing it all by hand. So there went last week.

And this week? A blizzard hit our area. For sure, it wasn’t half the blizzard the weather folks forewarned. But it was enough to get the schools released early on Monday, cancelled on Tuesday, and delayed on Wednesday. Let’s just say that Martin and I got to spend ample time together, which is not conducive to writing. Meanwhile, Adrian, fresh from the airport, appeared at home Sunday evening for a dinner party we threw, then departed again Monday morning (pre-“blizzard”) for the Midwest, and my good friend Coleen (you’ve met her before) was staying with me, to cater the aforementioned dinner party. Because of the weather, Coleen couldn’t go home to Upstate New York, Adrian couldn’t return from the Midwest, and Martin and I endured a continually evolving schedule.

I accomplished nothing.

Actually, Coleen and I washed a lot of dishes, by hand. Other than that, I accomplished nothing.

That’s a lot about me, right? No worries. I’m about to circle this post back to Martin.

Because guess what? Martin has had a tough couple weeks. Yeast flare, discomfort, blah blah blah. And yet—he did fine. Confronted with change upon change, he held steady. Nary a meltdown. When Janine couldn’t come, Martin had to skip the church kids’ club and run errands with me instead. He complained, like a six-year-old. He didn’t cry. We survived. When Samara couldn’t come, Martin said he was sad, and then spent too much time on his iPad. We survived.

I’m not ready, yet, to relegate meltdowns to the “so far gone” list. They still happen, or “kinda” happen. This morning, for example, Martin didn’t finish his breakfast in time to choose which dishes and utensils I would send for his school lunch. (We love incentives! If breakfast is done by 7:30 a.m., the choice is his. If he dawdles until after 7:30, I pick.) Upon learning that he had missed his deadline, Martin started to cry. I said, “I don’t think you have anything to cry about. Cut that out, and let’s get ready for school.” And then he was done.

Not long ago, if Martin said he wanted to change the radio station in the car, I had to undertake this analysis: “If I change the station, I’m giving into his rigidity, against my RDI instincts. If I don’t, he’ll have a meltdown, and I’ll have crying and distress on my hands.” Not anymore. Now I ponder something more like, “He wants a different station. How much do I like this song? Should I just change it, or should I listen to this song and let him choose the next?” That’s a world of difference.

There was a time when last week and this week would have been nightmares. We’ve come far enough that, now, they were just pains in the neck.

This morning the dishwasher was repaired. Right now, the Rangers are playing the Canadiens.

So here I sit. Writing.

Happy.

2015

Posted on January 17, 2015 by findingmykid

My last post reviewed 2014, which got me thinking about 2015.

New interventions are coming down the path, as always. Sitting in my home right now, as yet unpacked, is an ionic foot bath. On their way to us are two Himalayan salt lamps, for air purification and EMF reduction. Are these items just so much hype and bunk? Time to find out. I also ordered an essential oils diffuser. I’ve been applying frankincense and eucalyptus oil to the soles of Martin’s feet and the base of his neck, and witnessing more sharpness when I do. I’d like to see what will result if near his bed I diffuse those two oils, and whatever other oils I find to target his attention span.

I am hoping that 2015 will bring MRT to the greater New York area. I think Martin would be a good candidate for MRT. Unfortunately, because he attends school year-round, i.e., without a summer break, I have not been able to commit to bringing him for the required twelve weeks to any center currently conducting trials of MRT for ASD.

We’re returning in 2015 to some practitioners who helped Martin but fell away for whatever reason. At the beginning of 2013, we switched to a Connecticut biomed doctor when our original doctor moved her practice from Chicago (not too bad to fly there from New York) to California (heckuva long way). In two weeks, I’m taking Martin to California to see the original doctor, distance be damned. I’m figuring that a talented and intuitive doctor who has not seen Martin in more than two years can give us a realistic picture of what progress we’ve made, and what direction we should consider now. I also plan to seek a few sessions with the craniosacral therapist who, in past years, was able to tell me details about Martin’s health and body. I can’t point to any particular reason why we stopped seeing her, other than “too much on the plate.” It’s time to return.

As to me, Martin’s primary care-giver, I have three resolutions. Or maybe not “resolutions.” Publicly resolving to take action brings too much pressure. Let’s say this: I have three notions, and hopes of addressing them.

First, I want to do more thorough research and reading. Unless you are a fellow ASD-recovery parent, you may find this hard to believe, but—I think I do a subpar job when it comes to understanding the science behind Martin’s recovery. I’ve never made sufficient use of his genetic information, or insisted that his doctors do so. I have books I bought, and articles I printed, that I’ve barely picked up. I get so caught up in the everyday mechanics of recovery, the cooking and appointments and supplement orders and logging his health and behavior, that I fail to put aside for making sure I understand it all. Which is another way of saying I’ve been lazy when it comes to doing what I find most challenging.

Second, I want to help Martin understand more about why we do what we do. He knows about foods that “hurt his belly” or “keep him up at night.” As he gets older and his language skills continue to develop, I’d like to explain his health, and how our biomed protocol improves his health. The tricks will be finding a way to bring the explanations to Martin’s level right now, and saying it all without mentioning “autism.” Martin doesn’t know that word, and I wouldn’t care to have him learn it.

Third, I want to put some effort into my own health. I cook GAPS food for Martin, prepare dairy/fish meals for Adrian, and then, for my vegan self, grab whatever I can on the run. I don’t sleep enough. I work out too intensely, or not at all. In 2014 I suffered four major illnesses, one requiring the hospital. That’s got to change.

If 2014 was a banner year, 2015 shall be a confident year. Many underlying challenges are virtually gone, or fading fast. Martin sleeps. He talks. His digestion functions. He has few repetitive behaviors. He still perseverates, but at least he varies the topic. The work we have left to do—primarily socializing and maintaining attention/focus—is more nebulous, and its milestones less pronounced. When it comes to sleep or language, I can measure progress easily. When it comes to how Martin engages other kids, and how they treat him, I have less to chart. So I will have to keep faith, and remain confident that change is occurring, even if I grasp it only in hindsight.

P.S. I have a special announcement for long-time readers. Remember the cat chaos in my home? The hissing and bullying, the senior cats living in the basement? On the advice of a cat behaviorist, we’ve found a new home for the troublemaker-in-chief, George. He’s going to live in Northern California, with the mother of a close (human) friend of mine. He’ll be the only cat in a big house on a big yard, the empire of his dreams. And Martin and I, on our trip to visit the California doctor, will personally deliver George to his new home. Wish all three of us luck.

Year 2014 in Review

Posted on January 15, 2015 by findingmykid

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.

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.

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.

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.

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.

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.

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.

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.

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.

The Conversationalist

Posted on January 13, 2015 by findingmykid

Yesterday, Martin held this conversation with his behaviorist, “Miss Debbie”:

Martin: “Miss Debbie, on New Year’s Eve, did you watch the big ball in Times Square drop from the sky to the ground while all the people counted, ‘Ten, nine, eight, seven, six, five, four, three, two, one, zero!’?”

Debbie: “Yes, I did watch that.”

Martin: “Were you in Times Square?”

Debbie: “No, I watched it on television from my bed, at home.”

Martin: “Did Rose [Debbie’s daughter] watch the big ball in Times Square drop from the sky, too?”

Debbie: “She did.”

Martin: “Did Rose get in your bed with you to watch?”

Debbie: “Yes, she did. We set a special alarm to wake us up just before midnight if we fell asleep too early.”

Martin: “Did you and Rose fall asleep?”

Debbie: “Yes, we did, but the alarm woke us up and we saw it. Did you watch the big ball drop?”

Martin: “No.”

Debbie: “Were you already sleeping?”

Martin: “Yes, Miss Debbie. I was sleeping.”

Seriously! Read that exchange again! Note how Martin listened to Debbie’s answers and incorporated the information into his later questions. Note how Martin responded accurately when Debbie addressed him. True, Martin was discussing the Times Square ball, one of his current, ahem, “interests” (i.e., perseveration subjects), and a few times his cadence was awkward. But not long ago I was ecstatic at a two-exchange conversation, directed by someone else. Yesterday were six or seven exchanges, on topic, initiated by Martin.

That’s how far we have come.

ASD Recovery Recipe: Egg Poppers

Posted on January 13, 2015 by findingmykid

What to do for quick breakfast before school when a bowl of cereal or a frozen waffle is not an option? That’s a question I get from a lot of parents who are trying to manage a restricted diet.

For some time, Martin consumed only bone broth for weekday breakfast. He was okay with that, and so was I. Bone broth is filling and has protein. As long as I sent a substantive morning snack to school, he was fine until lunchtime.

The past few months, Martin has wanted solid food for breakfast. He will eat turkey bacon, but I’ve taken that off the breakfast list; I have Martin down to one meat meal per day, and right now the meat meal is school lunch. For breakfast, I look for non-meat items, preferably that I can prepare in advance.

Along come egg poppers, which my mother made Martin Thanksgiving week when I was sick. Martin doesn’t like to eat eggs scrambled, boiled, or fried. For whatever reason, when I cook the eggs into these “poppers,” he’s game. The poppers have other advantages, too. I can make them in advance in reheat them in the oven while he’s waking, and like meatballs, the poppers are a convenient place to pack vegetables.

Here’s the procedure:

Spray a stainless-steel muffin tray, liberally, with olive oil. Preheat the oven to 350 degrees.

Chop vegetables. Chop whatever you have that might work well with eggs. In my experience, including at least some onion makes the poppers more appealing. Mince everything well; tiny pieces help the poppers hold together.

Fill the muffin tray with a mix of vegetables. I have found that, if you don’t pack the vegetables, you can fill the cups almost full without the finished poppers falling apart. In this example, I started with red bell peppers and then added shiitake mushrooms.

Next came carrot greens. My chef friend turned me onto cooking with the greens from fresh carrots. They’re delicious. On top of the greens I added red onion.

Usually I would have stopped there. In this example, not yet. I have added limited portions of quinoa to Martin’s GAPS diet. That’s been a challenge, because Martin doesn’t like quinoa, much. It happened that, the night before I made these egg poppers, I had served quinoa with scallions, parsley, and white mulberries. I decided to pile some of the leftover quinoa on top of the veggies. My filled cups looked like this:

Once your cups are ready, whisk ten eggs with a half-cup of camel milk (or whatever milk your family uses), add salt and pepper, and pour this mixture over the vegetables.

You’re ready to bake. Put the whole tray in the oven. Keep an eye on the poppers. After fifteen minutes or so, they will “poof” into domes. Let them cook for another five minutes or so after poofing. That’s it.

In these pictures, I made a dozen poppers, because I served them also to Martin’s cousins, who have been visiting. Martin eats only one per morning, along with two zucchini muffins or slices of banana bread (recipe coming), so when I’m cooking just for Martin, I make only a few poppers, which I store in a sealed container in the refrigerator until ready to heart.

Mistake, I Think

Posted on January 9, 2015 by findingmykid

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:

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.

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.

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.)

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.

Mommy Sticks

Posted on January 8, 2015 by findingmykid

My family jokes that Martin is “momnmy-centric.” Very mommy-centric.

If I am in the vicinity, Martin is all about me. An interaction with another adult might transpire this way:

Adult, to Martin: “Martin, what did you do at school today?”

Martin, to me: “Mommy, did I go to school last Thursday?”

Me: “Martin, [other adult] asked you a question.”

Martin, to me: “We went to gym class.”

Me: “Can you tell that to [other adult]?”

Martin, to me: “No.”

Mommy-centric Martin needs to talk with me constantly, regardless of whether others are present. One particularly annoying derivative of constant talking is Martin’s anxious reliance on saying, “Mommy.” He might attach “Mommy” to continuous questions, related or unrelated, as in—

“Mommy, is today Friday? Mommy, is Freddie in the basement? Mommy, what am I having for dinner? Mommy? Mommy, is Daddy in the office? How do we spell ‘course’? Are we going on vacation next year, Mommy? Mommy, can you talk to me? Mommy?”

Other times there isn’t so much as even a question with the “Mommy.” He just calls “Mommy!” because he wants to know I’m present, or because he’s nervous, or because someone else has spoken to him, or because he needs to be talking but has nothing to say, or because—. If Martin is eating breakfast and I exit the kitchen, “Mommy!”, yelled from the table, will follow me down the hall. If Martin is playing and I go to the bathroom, I can expect at least four or five “Mommy!” cries before I reemerge. If I plead, “Martin, can you please stop saying ‘Mommy’ for a few minutes?”, he responds with something like, “I’m not going to talk at all. That’s it. I’m not going to talk at all! Mommy, should I not talk at all? Mommy?”

The habit is annoying, to be sure. Even more problematic, other children have started to notice and use it as a reason to tease Martin. At a birthday party not long ago (effin’ birthday parties!), Martin called to me non-stop from the table where the children sat to eat. By the time the pizza was cleared and cake arrived, a couple girls near Martin were mockingly yelling, “Mommy-mommy-mommy-mommy-mommy!” Martin’s cousins Luke and Rosie, who are visiting right now, say, “Oh, mommy-mommy” whenever Martin is absent and we mention his name.

Some behaviors demand radical solutions. Introducing: mommy sticks.

Each morning, since Sunday, I place a glass on the kitchen counter and fill it with 25 pipe cleaners, which I call mommy sticks. When Martin says “Mommy,” I remove one pipe cleaner. If, at bedtime, one or more sticks remain in the glass, Martin wins a surprise. Nothing major. An Angry Birds pencil. Stickers. A coin-sized plastic car. The prize isn’t that important; Martin likes to win, so incentive-based systems work well.

I don’t distinguish among uses of “Mommy.” It might, for example, be completely legitimate for Martin to yell, “Mommy! I think the stove is on fire,” or, “Mommy! Is the cat supposed to be eating off my dinner plate?” Still, doing so would cost him a mommy stick, just as much as randomly calling “Mommy” to the wind. My goal is to get Martin to think about why he’s saying “Mommy,” and whether doing so is worth a mommy stick, instead of vocalizing by habit.

So far, I’m giving two thumbs up to mommy sticks. Four days in a row, Martin has won the prize, and Adrian and I have noticed a marked decrease in “Mommy!” floating around the house. Yesterday, Martin snidely tempted fate; when he saw about a dozen sticks left, he looked directly at me and said, “Mommy. Mommy. Mommy, Mommy, Mommy.” I extracted five pipe cleaners. Still he met his goal. That moment notwithstanding, I hope the system continues to function.

And I wish all behaviors could be addressed this easily.

Oranges, bananas, apples, avocados, onions, and mommy sticks. That’s the kitchen counter in our ASD household.

Birthday Parties and Swimming Pools

Posted on January 7, 2015 by findingmykid

Birthday parties and swimming pools. I hate them.

I suppose that sounds harsh. Who hates birthday parties and swimming pools?

The problem with birthday parties and swimming pools is that they expose Martin’s remaining social weaknesses.

Case in point No. 1:

In December, two boys from Martin’s class held a joint birthday party at a Chuck E. Cheese. If you’re an American parent, you’ve probably experienced a Chuck E. Cheese birthday party. Video games. Pizza. Noise and flashing lights. Giant automated rodents manipulating musical instruments.

(Digression. More than three decades ago, I had my ninth birthday party at a Chuck E. Cheese. It may be the fog of time to blame, but I remember the place very differently than today’s Chuck E. Cheese. In my memory, Chuck E. Cheese is dimly lit, with more stages and Skee-Ball, fewer arcade consoles, and—could this be pure imagination?—physical play like a ball pit. Also, a candy counter with mammoth speckled gobstoppers. The candy counter was out front, before the entrance turnstile, and I used to duck into Chuck E. Cheese just to pay 50¢ for a gobstopper so big that I had to extract it from my mouth, repeatedly, until I sucked it down to a manageable size.)

I have written before about Martin’s difficulties when we attend class play dates. Half the boys in his self-contained special-ed class have speech/language delays but no social impairments. The class breaks roughly into three groups: the boys who instigate some imaginary game or roughhousing and play together, the boys who play alone and seem uninterested in joining the others, and—Martin. Martin, who wants to participate in cooperative play yet still doesn’t quite grasp the “how,” or have the confidence, to make others include him. Martin, gazing through the window, never beckoned to enter.

Chuck E. Cheese in December was a disaster. The flashiness overwhelmed Martin, and he couldn’t, or didn’t want to, understand any of the video games. I managed to sit him in front of me on a fake jet ski and run a virtual course for a few minutes, until he (quickly) bored. Soon he went instead to fixate on the mechanical mouse band. He ran hither and fro in front of the stage, occasionally tried to climb aboard, refused to venture back to the game section, where his classmates played.

Late in the party, after the pizza, and Martin’s special GFCFSF pizza, I was happy to find Martin and Jack, one of the more social boys, together in a walk-in video console, all smiles, pretending to play the game. I asked, “What are you two doing?” Jack answered, “We’re shooting aliens!” At that moment, Benjamin, another social boy, appeared. He pointed to Martin and said, “You go home!” Then he yanked Jack’s arm and said, “Jack, come play with me!” Jack obliged, exited the video console, and scampered away with Benjamin.

Martin stopped smiling. He looked at the empty space beside him, and said, “Mommy, I’m ready to go home.”

Yeah. Unstructured group play dates suck. Birthday parties suck double.

Case in point No. 2:

Last week, we were vacationing in Florida with my father-in-law; Adrian’s 13-year-old nephew, Luke; and Adrian’s 11-year-old niece, Rosie. For two days of our trip, we were joined also by another couple and their almost-three-year-old son, Marty. (Pardon the confusion. Their son happens to have the same name as the alias I chose for Martin in this blog. Not my fault. I started the blog before they named their son.)

Luke and Rosie, who see us infrequently and (by Adrian’s choice) have never been told that Martin has autism, showed their cousin due attention, amusing him, sharing iPad games, keeping an eye on him near water. If Luke and Rosie perceived Martin’s differences, they may have chalked them up to the language barrier; neither Luke nor Rosie speaks English, and although Martin undoubtedly understood his cousins, these days he refuses to speak Spanish with anyone except Samara. For the most part, Adrian and I were pleased with the children’s interactions. Rosie even had Martin sleeping in her bed at night.

When almost-three-year-old Marty arrived, however, The Martin Show was over. Once an adorable, lightweight—pick him up! carry him around! push him on a swing!—preschooler is on the scene, who wants to hang around with an awkward, sometimes stand-offish first grader? Luke and Rosie turned their attention elsewhere, and Martin was left to his iPad.

One morning, while the rest of the adults went parasailing, I took Luke, Rosie, Martin, and Marty to the resort’s splash pool. Little Marty was in high spirits as Luke and Rosie sprayed him with water, helped him through tunnels, and solicited giggles. Martin, my Martin, responded by focusing entirely on me, asking just-to-be-talking questions. “Mommy, are we in Florida?” “Mommy, did your cat named Billy die in 2002?” “Mommy, are you looking at me?” I told Rosie that I thought Martin might be feeling lonely. Rosie sweetly approached Martin, took his hand, and asked whether he wanted to climb into the model pirate ship. Martin said, “Go away.”

Martin also complained, to me, that he wanted to leave the splash pool and go to the nearby swimming pool. No one else wanted to leave the splash pool, and whereas I couldn’t let either Martin or Marty out of my sight, I told Martin he’d have to wait. He waited, kvetched, begged. At last I told everyone to move to the swimming pool, hoping Martin might re-engage.

Another disaster. I’d forgot the way Martin generally behaves in a crowded swimming pool. He likes swimming these days, I think because of the sensory aspects. Those same sensory aspects seem to prompt him to turn almost entirely inward. He bounces around the pool steps, half-floating, tunes out other children, and if he speaks, directs the comments only to me. He had followed this pattern for three days already at the resort. I’m not sure why I thought it would change now, and it didn’t.

Luke and Rosie, for their part, took over the complaining, because they wanted to take Marty back to the splash pool. So after 15 minutes of Luke, Rosie, and Marty ignoring Martin in the swimming pool, and Martin ignoring them, I moved everyone back to the splash pool. Martin isolated himself again, this time with the added unhappiness of having had to accede to others’ wishes.

Golden. Martin competing with other children sucks. Swimming pools double suck.

I’m going to put birthday parties and swimming pools out of my mind. Instead, I will imagine fluffy kittens chasing butterflies through a meadow.

It’s not denial. It’s survival.

Martin and Marty at the splash pool, occasionally aware of each other.

In a nice moment without other kids around, Rosie escorting Martin to the children’s area.

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Monthly Archives: January 2015