Monthly Archives: May 2014

In Praise of the Wonder Kid

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Right around the time Adrian and I were considering a second child, Martin was diagnosed with autism, and we put off the decision in order to focus on getting Martin help. The years since diagnosis have been therapies and special diets and supplements and doctor visits and too little sleep. I was almost 36 years old when Martin was born. By the time Adrian and I cleared our heads enough to think again about a second child, we would have been looking at a 40+ pregnancy. That, combined with the increased risk of having a second child on the spectrum if you already have one, sealed the decision. Martin would remain an only child. All of our resources belong to Martin alone, for his recovery.

But alas, a typically developing sibling sure might help. A brother or sister could provide a full-time role model and, if we were lucky, a buddy to protect Martin from neighborhood cruelty, from slights and oversights and bullying.

With that in mind, allow me to sing the praises of Martin’s cousin, Mandy, who is also an only child. Mandy and Martin were born only ten weeks apart and, though they live four hours away from each other, have known each other since babyhood. They get three or four solid visits annually.

When Mandy came to our home last August—Martin had already turned five, and Mandy was about to—they were finally old enough that I thought Mandy might need some explanation of why Martin seems different. Immediately, I found an opportunity to address the issue: Mandy and her mother (my younger sister) arrived after Martin had gone to sleep for the night, Martin’s regular sitter was at the house, and Mandy was hungry, so I volunteered to take them out for pizza.

Ah, to have a kid who can go out for pizza!

“Hey Mandy,” I said. We were sitting in the pizzeria waiting for our order. “Do you know how to read?”

I knew she didn’t.

“Well, guess what?” I asked. I dragged my voice, to indicate that something amazing was coming. “Martin already knows how to read!” Indeed, Martin started reading young. He read fluently (comprehension is a separate issue) by age four-and-a-half.

Mandy opened her mouth in astonishment and gasped toward her mother.

Ah, to have a kid who gasps toward mom when surprised!

I went in for the kill. “But, Mandy, you know what? You are very good at talking”—she is—“and Martin is not good at talking at all. That’s how it is: Some kids are better at talking, and other kids are better at reading.”

I wasn’t sure this little speech would work.

It did.

Mandy and Martin’s visit that August was delightful. Mandy, who is naturally bossy, in the best way possible, forced Martin to interact constantly, and she decided to talk for both of them. Upon Mandy’s request, and Martin’s acquiescence, they both slept in the big bed in our guest room, and I knew when they woke up because I heard the giggling start. One morning as I stood in the kitchen, they walked through. Mandy had Martin’s arm over her shoulder and was pulling him along by the wrist as she announced, “We decided to go outside.” Martin didn’t mind Mandy’s commanding spirit. It brought out his best. He responded to her every whim, including when she thrust paper upon book in front of him and demanded, “Read this for me!”

The big test came when Mandy had been with us almost a week. Martin had a hippotherapy session, and I brought Mandy along. While Martin was riding, Mandy befriended the farm proprietor’s seven-year-old granddaughter. I could tell that Mandy was impressed to be playing with an older girl, and I thought, This is it. She’s not going to be so eager to hang around Martin when this big kid was in the picture. Maybe she’ll even be embarrassed by her awkward cousin.

Curse me for that lack of faith. As soon as she saw Martin dismount the horse, Mandy scampered over, grabbed his wrist, and ordered him to come play. Then she tugged Martin to the seven-year-old and said, “This is my cousin Martin!”

Mandy came to visit again this February, when my sister and I took the two kids to see The Lion King on Broadway. Saturday mornings Martin usually goes to the Equinox gym with Adrian and plays in the kids’ club there while Adrian works out. The Saturday morning of Mandy’s visit, Adrian volunteered to take both kids to the kids’ club.

After they returned, I asked Adrian whether Mandy had still wanted to play with Martin at the kids’ club, or whether, when in a crowd, she had gravitated to the typically developing children instead.

Adrian reported that when he came after his workout to pick the cousins up, Mandy was indeed playing with the typically developing children.

… And, Adrian said, Mandy was directing those typically developing children to make sure they let Martin play, too.

Thank you, Wonder Kid. Thank you for looking out for Martin.

Mandy and Martin on the beach, August 2013.

Mandy and Martin on the beach, August 2013.

What Comes Last

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A couple years ago—hard to believe how long we’ve been at this—I lamented to Martin’s (then) biomed doctor that, while Martin’s behavior, sleep, and overall health had improved, I had not seen as much progress in his language. The doctor told me not to worry. “Language,” she said, “often comes last.”

I carried that mantra for a long time: Language comes last. When it took Martin so long to start asking questions, or to use the command form, or to pick up nuances and idioms, I thought, well, language is going to come last.

Or will it?

This year, Martin’s language is much improved. As I’ve written, his speech is not perfect. It often sounds scripted, or rote. Sometimes it seems like he’s exploring a foreign language: Unable to find the easiest or most direct way to express himself, he searches his capabilities and comes up with an unusual (original?) formulation. And his receptive language, his processing delays, still poses challenges; I might be explaining to Martin that we’re going out after lunch, only to have him melt down because he wants lunch, and the “going out” part has registered but not the “first, lunch” part. At his time, he still very much needs the intensive-language-based school program he attends.

That fact notwithstanding, Martin can speak. He speaks in sentences. He asks questions. He orders me around. When he’s not frustrated and mixing up his words, he can express himself, in a manner understood by most anyone who listens with care.

To that extent, language has come.

Language has come, and it did not come last.

Martin’s recovery has two additional, gigantic roadblocks that are not language, though language-related.

First, Martin still can’t “attend.” He doesn’t pay attention. He doesn’t listen. He talks when others are mid-sentence. Unless an activity is one he enjoys (music, eating, drawing), he shows little interest in what others are doing. And even when something does catch his attention, he doesn’t stay with it for long, except for example to stim by hitting one music key repeatedly, or to read his favorite book, The Philharmonic Gets Dressed, over and over.

Martin’s teachers have identified attending as his most significant challenge in the classroom; even with a 3:1 student-teacher ratio, he has trouble following. At home, the nanosecond attention span means it might take Martin 20 minutes to change clothes, because he gets distracted, or succumbs to boredom and starts complaining instead of dressing. It also keeps us from sharing experiences. If I say, “Oh, wow! Look at that bird!”, Martin might glance out the window, then jog away before I can comment on the bird’s color or size, or he might not look at all.

So language didn’t come last, because language has developed more than attention.

Second, Martin still has a lot of trouble socializing.

When we were in Austin around Easter, I arranged a playdate with “Stewie,” the six-year-old, typically developing son of a college friend. Martin and Stewie had never met, and Stewie was not informed in advance that Martin has challenges. We met at a crowded playground. The playdate went remarkably well. Although Martin was less interactive than an NT child would have been, he didn’t spend the playdate in his own world. Several times (some with prompting) he went to find and engage Stewie. He and Stewie stood together and gazed at an inchworm hanging on Stewie’s finger. When one family at the playground brought out a bubble pumper, Martin joined the other children, clapping his hands and chasing the bubbles. Stewie never even shot his mom that quizzical look that means, “Is there something different about this kid?”

The experience with Stewie gave me a sort of high. I texted Adrian: “Martin is having a playdate with a typically developing boy, and he’s doing FANTASTIC!”

But of course, in autism recovery, disappointments find a way to deflate any high, and four days after Martin played with Stewie, we had a much less successful playdate back in New York, with four classmates from Martin’s kindergarten. Martin attends a school for children with speech and language delays. About half the kids in his class also have autism or some other social impairment. By coincidence, none of the four boys other than Martin who attended this playdate had any social impairment. They are the social kids.

What happened was typical of what we experience when Martin attempts to play with more than one child at a time: Martin was left out. In a one-on-one situation, a playmate has few options other than to engage Martin. In a multi-kid situation, those without social impairments gravitate to each other, and away from the awkward boy.

Martin’s classmates, at the playground where we met, decided to fight dragons. They scampered about as a group, swinging imaginary axes, wielding nonexistent swords, screaming with excitement at the game they’d created.

Martin climbed on rocks and monkey bars. He went down the slide and wandered across the playground’s bridges. When I suggested that he join his classmates’ game, he approached the crowd and, using the social skills he’s been taught, ask shyly, “What are you doing?”

But the other boys were too boisterous and engaged to hear, and they ignored him.

Martin sat down, alone.

As he and I were walking to the car to return home, I asked, “How was the playdate? Did you have fun?”

My son responded, “No. I would like to do a playdate with only grown-ups.”

The next morning, Martin said he did not want to return to school. Thinking that he was experiencing end-of-spring-vacation blues, I tried cajoling him with his favorite subjects—“Do you think maybe you will have computer class today? What will you make in art class?”—and enumerating his classmates. “Do you think Christopher will be there? Are you looking forward to seeing Jack, and Quinn?”

When I finished my song-and-dance, Martin shook his head and said, “No. My friends at school don’t like me.”

Some defeats just crush your soul, don’t they?

So language didn’t come last, because language has developed more than socialization.

Which begs the question: What’s going to come last?

How will I know when we’ve reached our destination?

Martin, in the blue and white stripes, joins in bubble fun during his playdate with Stewie.

Martin, in the blue and white stripes, joins in bubble fun during his playdate with Stewie.

ASD Recovery Recipe: Mustard Mushroom Boats

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“Mustard Mushroom.” Say that ten times, fast.

Let me begin with full disclosure: Martin ate these mushrooms begrudgingly, and did not like them. C’est la vie. Mushrooms seem to have some beneficial effects for ASD kids. (Again this year, Autism One has a seminar on the topic.) Unfortunately, Martin doesn’t like to eat mushrooms. My go-to method is mincing mushrooms and cooking them with lentils, which are GAPS-legal. Also on the lookout for new ideas, I found a recipe on-line for stuffed mushrooms with mustard (his fave) and altered it to include the base ingredients I had.

 12 crimini mushrooms

one apple or pear

¼-½ cup leftover meat

½ cup mustard

Dice the fruit, and the leftover meat. (I used turkey bacon.) Remove the mushroom stems from the caps, and dice the stems, too. I diced everything to about ¼-inch cubes. If I make this recipe again, I will dice smaller, which may make the “stuffing” more palatable. Sauté the mushroom stems in a bit of olive oil, and if the leftover meat isn’t already cooked, sauté that too.

Mix the stems, fruit, meat, and mustard, and fill the crimini caps with that mixture. I also sprayed the caps with olive oil, to give them a sheen.

Spray a baking sheet lightly with olive oil, and set the caps on that. Bake 15 minutes at 350 degrees.

Some pictures are below. I’m thinking I could really use a “food stylist,” or at least a better camera.

This is the way the mushroom boats looked when Martin's meal started.

This is the way the mushroom boats looked when Martin’s meal started.

Before long the boats became more of a casserole, as I cajoled Martin to eat what were clearly mushrooms.

Before long the boats became more of a casserole, as I cajoled Martin to eat what were clearly mushrooms.

So

Posted on by findingmykid
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I’ve written before about a phenomenon I call “slow-motion childhood”: When your kid struggles for what typically developing kids acquire naturally, you notice micro-steps. Maybe you even get more moments for celebration.

I picked Martin up at school this afternoon. I do that on Tuesdays, so that he, assisted by a special-education teacher, can participate in “Kids’ Klub” at our church. (Yes. Spelling “club” with a K just about kills me. But that’s what they call it.) From the backseat, Martin started talking about the satellite-radio music. He fixates on music: “Mommy, do you hear a bass guitar?” “Mommy, are they playing live?” “Mommy, is there clapping in this song?” Lately he’s taken to memorizing which song I like best from every singer or band we hear. “Mommy, ‘Bennie and the Jets’ is a good song, but it’s not your favorite song by Elton John. You’re favorite song by Elton John is ‘Goodbye Yellow Brick Road’.”

In sum, Martin talks about the music. From his booster seat, he can lean to the side and read the name of the artist and song, every artist and song, on my SUV’s radio screen. There are times when Martin’s reading skills are not as pleasing as you might think.

Martin’s spoken language is pretty solid these days; he can combine words and concepts, and figure out ways to express layered thoughts. “Mommy, were those two songs both by the BeeGees?” “Mommy, George Harrison used to be in the group The Beatles. This is a solo song from after when he was with the group The Beatles.” Still, and even apart from the perseveration, there can be an awkwardness, and a rote pattern, to Martin’s speech. He recycles phrases. New expressions arise rarely.

This afternoon, our first conversation, while on a familiar topic, had a speech breakthrough.

 “Mommy, this song is by the group called Heart. I don’t like the song.”

“I don’t like this song very much, either. I’m not a big Heart fan.”

“You don’t like this song?”

“No.”

“So change it.”

There it was. Did you catch it?

Martin used the word “so” as a coordinating conjunction, in a manner in which the precedent construction—my not liking the song—was unstated and implied. What Martin was saying was, “Because you don’t like this song, you should change the station.” What rolled off his tongue was the casual, idiomatic, and perfect, “So change it.”

So … do you even need to ask?

I changed the station.

In the GAPS

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As assorted posts have mentioned, two months ago I switched Martin’s diet to GAPS. “GAPS” stands for “Gut and Psychology Syndrome” and is the work of a British doctor and nutritionist, Natasha Campbell-McBride.

Dr. Campbell-McBride’s book, Gut and Psychology Syndrome, sets forth how autism (along with dyspraxia, ADD, schizophrenia, and other apparent brain disorders) is symptomatic of a compromised immune system, linked with an imbalance in gut flora. The author suggests healing the gut with a diet comprising fresh foods prepared at home, without grains or sugars or other carbohydrates, and with plentiful meat and/or fish stock. (I’m simplifying.)

It’s been more than three years since we started eliminating foods from Martin’s diet. Since January 2011, Martin has not eaten gluten, casein, soy, corn, refined sugar, processed food, additives, or conventional/GMO food. We also introduced some foods that Martin, a vegan since birth, had never had before: eggs, ghee, honey, and fish oil. After some months we also added meat, which was especially challenging because I’m vegan and Adrian is pescetarian. Other variations along the way in Martin’s recovery diet have included restricting oxalates, temporarily avoiding foods to which Martin showed sensitivities, and trying to eliminate all sugars for one summer.

As of February 2014, Martin was eating meat, eggs, vegetables (including limited amounts of starchy vegetables like sweet potatoes), fermented vegetables, legumes, gluten-free grains like buckwheat and rice, and very little fruit. In puddings and baked goods he had complex sugars like raw honey or raw agave. With very few exceptions, like rice crackers, everything was organic and homemade.

Which is pretty good.

The thing is—Martin’s gut still didn’t seem to be healing. His bowel movements were light-colored and fluffy or flakey, instead of firm, and he had started complaining of stomach pain. Again. I thought we were done with stomach pain.

I decided to take the diet a step further. In the ASD recovery world, there are several diets that people adhere to. The formulations start with gluten-, casein-, and soy-free and branch out from there. Two of the most popular diets are the Specific Carbohydrate Diet, or SCD, and GAPS, which is an adapted variation of SCD. I didn’t have a scientific basis for choosing between GAPS and SCD. (Science doesn’t like me. Science doesn’t want me to understand it.) Some parents love SCD. Some swear by GAPS. Because I already owned Dr. Campbell-McBride’s book and was more familiar with GAPS, I decided to try that route and hope maybe Martin would clear some hurdles to gut health.

For extreme gut distress (ongoing diarrhea, for example), Dr. Campbell-McBride suggests various stages from an “introduction” (almost only bone broth) to “full GAPS” (all the GAPS-compliant foods, still incorporating ample bone broth). Martin was not experiencing extreme distress, just a lack of overall gut health. Therefore, I skipped the introduction stages and put him directly onto full GAPS.

Switching to GAPS meant three primary changes. First, Martin has to stop eating starchy vegetables, cocoa (temporarily), rice crackers and his few other grains, all sweeteners except raw honey, and some lesser-used foods like arrowroot, cannellini beans, and roasted nuts. (Raw nuts are acceptable.) Second, he gets to add a few more fruits, if yeast is under control. (Last month, after the nystatin debacle, Martin started taking Candex, which has been helping balance yeast without the side effects.) Third, he drinks meat stock with every meal. Most weekdays he takes only meat stock for breakfast. I make stock weekly, rotating among chicken, beef, lamb, and whatever other meat/bones I can get.

Which brings us to the million-dollar question: Is it working?

Two months is too little time to make a long-term prediction. (By way of digression, I’m not sure I’ve ever used “two,” “too,” and “to” in a single sentence before now.) Martin’s gut is improving; he’s stopped thrusting his fists into his abdomen and complaining of stomach pain, and his bowel movements have become firmer. On the other hand, I’m yet to see unusual progress in his behavior. He’s been up and down, the same jaggedly positive trend as ever in his recovery. I call it 100 steps forward, and 99 steps back. I remain hopeful, nonetheless, that sealing his gut will soon lead to more behavioral improvements, because he will be better able to absorb his nutrients, supplements, and so forth.

At this time, the two-month mark, I’m giving a tentative thumbs-up to GAPS.

Yes, this is the worst-quality photo ever. Sorry. It's Martin, taking his bone broth for breakfast, "assisted" by our cat George.

Yes, this is the worst-quality photo ever. Sorry. It’s Martin, taking his bone broth for breakfast, “assisted” by our cat George.

Third of Three Firsts: A Nod

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The winter seemed eternal this year. Only in mid-April did spring’s first tentative harbingers arrive—daffodil buds, pollen, temperatures in the 60s.

“Martin,” I asked, one of those first warm afternoons, “it’s such a beautiful day. Shall we open the sliding doors and let some air into our family room?”

Martin stopped playing his toy saxophone and looked at me.

As I’ve learned through RDI, I waited five seconds, to give Martin’s mind time to absorb the question, and then said, “What do you think? Shall we let some air in?”

Martin still made no verbal response.

But after another second passed, he looked at me again and nodded. Twice.

Beginning very young, even before his diagnosis, Martin could shake his head no. (He could verbalize “no,” too, when he didn’t want something. Learning to verbalize “yes” when he wanted something, as opposed to repeating the last words he heard, took much longer. I believe that is common in echolalic children.) Nodding, however, never came naturally to Martin. I had to teach him the physical motion; I put my palms over his ears, spread my fingers, and gently maneuvered his head up- and downward. After months of practicing the motion, I could get Martin to nod on his own by requesting, “Can you show me ‘yes’ with your head?”

This time—his nonverbal response to, “What do you think? Shall we let some air in?”—was the first time I’ve witnessed Martin nodding unprompted. The nod was awkward, as they always are. I didn’t care.

I said, “Thank you for answering me with your head, Martin!”

Then I opened the sliding doors, and let the fragrant springtime air drift through our home.

Daffodils (and those pesky dandelions!) bloom in our front garden. I’ll nod to that.

Daffodils (and those pesky dandelions!) bloom in our front garden. I’ll nod to that.

Second of Three Firsts: The Boys’ Bathroom (in a Bouncy-House Place)

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Martin and I spent Holy Week/Passover in Texas, visiting my parents. Away from home, Martin had fewer friends and activities to occupy him, so when I wasn’t dumping him on my parents—I mean, letting my mother and stepfather enjoy time with their grandson—I resorted to visiting an “inflatable play zone.”

In lay person’s terms, an “inflatable play zone” might be called a “bouncy-house emporium,” or “hell.” It is a large, undivided space (think high-ceilinged hotel conference room, or big-box store) filled with blow-up castles, mazes, slides, in which kids can jump and climb to exhaustion. In an inflatable play zone, you hear a constant whirr from the machines pumping air, a sound as if you were in an airplane. A gigantic airplane with screaming children in sensory overload. An airplane with nothing to occupy you other than watching the screaming children in sensory overload.

One afternoon Martin and I set out for the “Extreme Fun” bouncy-house place, in north Austin. My parents were due for a few hours’ break, having watched Martin all morning while I enjoyed a massage at the local spa. My brother Rudy, who was visiting Texas from California, at first agreed to accompany us but then mysteriously realized he needed to “work” on “a project for a friend,” so Martin and I were alone.

We reached our destination, disembarked my parents’ Highlander, crossed the parking lot, and discovered a note stating that, after seven years’ business, Extreme Fun had shuttered its doors.

Fancy that.

I brought Martin back to the car and, seeking to prevent a tantrum, launched into my speech about disappointment. “Oh, that’s a disappointment. Let’s think: Should we cry? Should we—”

At this point, ten seconds into the disappointment discourse, Martin cut me off and said:

“Is there another bouncy-house place around here?”

Holy cow, that was a good question. A good, appropriate question, expressed perfectly, without whining or tears. Even the intonation flowed.

A question like that deserves reward. I pulled out my iPhone and searched for another bouncy-house place. After Google Mapping the choices, I restarted the Highlander and drove us half an hour west to the “Hoppin’ House” in Lakeway, Texas.

The Hoppin’ House turned out to be a pleasant facility with eight or ten inflatables and a foam-cube pit. We stayed for more than an hour. At no point was more than one other family present, so Martin had his run of the place.

After a while Martin needed a potty break. The boys’ and girls’ bathrooms, child-size, sat side-by-side. I held Martin’s hand and opened the door to the girls’ room, so I could enter with him.

Martin pulled back. He asked, “Is this the bathroom for little boys?”

He poses that question, or some variety of it, often. I responded, as usual, that it was the bathroom for mommies and their children, and that the other one was for daddies and their children.

Martin pulled back again. He looked at the other door, as if contemplating.

I’d never let Martin use a public restroom alone. He gets so easily distracted. Who knows what might go on once the door shuts? Bathrooms are so germy. He would put his hands on everything. And he doesn’t like to do “stand-up peepees.” He would sit on the toilet, and let me tell you, I can barely manipulate those flimsy seat covers. It ain’t gonna happen for Martin.

Still, there he was, gazing upon the boys’ room. I’d been in the girls’ room earlier. It was tiny; in the same-sized boys’ room, there couldn’t have been more than two stalls, and probably no urinals. (I loathe urinals.) The bathroom had one exit, and we were the only ones in the vicinity, so I could lurk outside the door without feeling foolish.

It was like with Justin, our next-door neighbor, and babysitting: If I was ever going to let Martin use a public restroom alone, this set-up was darn close to perfect.

“Martin,” I asked, “would you like to go in the boys’ room?”

Without hesitation, Martin said yes. He didn’t smile. He looked courageous, determined, as he disappeared inside.

I waited. I don’t know how long I waited. Long enough that I thought Martin should be done peeing. Then I cracked open the door and peered into the bathroom.

Martin, who didn’t notice the intrusion, was washing his hands. At home, he protests against washing his hands, or loses focus and makes faces in the mirror instead, or runs out of the bathroom and claims he must use the kitchen sink. In the public bathroom, he was nothing but business. I watched him rinse those little hands and grab a paper towel to dry.

I shut the door so he wouldn’t know that I’d checked up on him.

Moments later Martin emerged. I exclaimed, “You did it! You went in the bathroom by yourself!” and threw my arms around him while praising the big-boy deed. Martin seemed uninterested in my praise. He said he was thirsty and asked for a bottle of water.

To Martin, I guess, using the boys’ room alone was no big deal.

Check that one off the list.

Martin, climbing above the foam-cube pit. Sorry about the photo quality; I was kind of balancing on the edge of the pit as I snapped pictures.

Martin, climbing above the foam-cube pit. Sorry about the photo quality; I was kind of balancing on the edge of the pit as I snapped pictures.

Martin heading up a slide. Sometimes I want to follow him onto these things. They look fun.

Martin heading up a slide. Sometimes I want to follow him onto these things. They look fun.