What Comes Last

Posted on May 25, 2014 by findingmykid

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.

ASD Recovery Recipe: Mustard Mushroom Boats

Posted on May 19, 2014 by findingmykid

“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.

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

So

Posted on May 13, 2014 by findingmykid

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

Posted on May 8, 2014 by findingmykid

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.

Third of Three Firsts: A Nod

Posted on May 4, 2014 by findingmykid

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.

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

Posted on May 3, 2014 by findingmykid

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

First of Three Firsts: The Babysitter

Posted on April 29, 2014 by findingmykid

These past few weeks have brought a few firsts for Martin. Actually, for me, Martin, and Adrian. Here come three posts on firsts.

Since Martin’s diagnosis three-and-a-half years ago, we have not used any babysitters other than Samara, the nanny who’s cared for Martin since he was a baby; Janine, a special-education graduate student who worked with Martin through Early Intervention and whom we subsequently hired privately; and family members. Having a kid with autism made me skittish to rely on the neighborhood teenagers for babysitting. Having a kid recovering from autism only added complications. Who wants to explain food restrictions, homeopathic drops, and supplements?

Shortly after we moved to our new suburban home, a 14-year-old neighbor named Justin rang our doorbell, introduced himself, and volunteered that he would be happy to babysit anytime. He seemed a respectable and well-spoken young man.

Still, I didn’t go for it.

At least, not until nine months later, when circumstances intervened. Samara needed to return to her country of origin for six weeks. Adrian and I had a Friday evening dinner date in the City, scheduled months earlier, with old friends. Because of a calendar mix-up and (Adrian’s) work travel, we’d had to cancel two dates in a row with this couple, and I was determined not to miss a third. Janine works elsewhere on Fridays.

(Justin, coincidentally, stopped by a second time and offered his services.)

What to do, what to do?

I waited until a Tuesday afternoon when I knew Justin would be at school, then slipped next door to speak with his mother. I presented a brief outline of Martin’s challenges (“speech and language delays, and something like Asperger’s syndrome, depending on which highly paid expert we consult”) and asked whether she thought Justin would be up to the task.

Justin’s mother listened. She posed a few relevant questions. She said, “I think Justin can handle it. And he’s a pretty honest kid. If he’s in over his head, he’ll say something.” Then she asked where Martin goes to kindergarten. When I told her—Martin attends a private institution for children with speech and language delays—she responded, “I know that school. We considered at it for my younger son. He’s speech-delayed.” And what evening did we want Justin to babysit? Friday? Friday would work well. “My husband and I will both be home all night,” she said, “so if Justin needs help, we could come over.”

Oh? Oh? Justin has a younger brother with speech delays? Justin parents will be next door the entire time, ready to spring into action if problems arise?

Even I had to admit that, if we were ever going to use a neighborhood babysitter, this set-up was darn close to perfect.

Arrangements were made. Martin was informed that “Justin the teenager” would “come over to play with him” on Friday. Subsequently Martin was informed that Mommy and Daddy would go out to eat while Justin the teenager was here playing with him. Finally Martin was informed that Justin the teenager would be helping him with bedtime while Mommy and Daddy were out to eat.

To my surprise, Martin appeared unfazed by these revelations. Friday morning, he boarded the school bus with a smile, excited that a teenager was coming to play with him.

I spent all day Friday getting ready for Justin’s 5:00 pm arrival. The house was spotless. All laundry was washed and folded. Martin’s bed had fresh linens. The family room was ordered. (I couldn’t bear to have the neighbors think we’re slobs.) Martin’s dinner, dessert, and evening snack were prepared. Martin arrived home from school at 3:45 pm. Immediately I ushered him to the kitchen table for dinner. I reminded him that Justin was coming, that I was leaving to meet Daddy in the City, and that Justin would help him with bedtime. I added that, while Daddy and I were out, Justin would be in charge. Martin ate his dinner with no objection. By 4:45 pm, dinner, evening supplements, and the essential bedtime supplements—those that I consider non-essential, I decided to skip—were in Martin’s tummy.

Justin arrived. Martin ran away and hid his face, then showed up and waved hello, then fled again. I told Justin the following (note that supplements and recovery protocol never came up):

* Martin has “food allergies,” so please feed him only what I’ve specifically left for him. (Here, Justin conscientiously asked, “Does that extend to scent allergies? Will it be okay if I order dinner delivery?”)

* Martin should go to bed around 7:30 pm, but it is not the end of the world if he doesn’t, or if he doesn’t go to sleep. (Here, Justin conscientiously asked, “Does he brush his own teeth? Will I need to help him? Does he like to hear a story?”)

* I expect Martin to become upset, maybe throw a tantrum, when I leave. Don’t worry. He’ll calm down.

* We will be home by 11:00, and if when we get home Martin is alive, then we’ll consider the evening a success. The rest is icing on the cake.

At this point, I asked Justin to make sure that he had both my phone number and Adrian’s, and Justin pulled out a mobile phone in a New York Rangers case. When I asked if he is a fan, Justin responded that he babysits because he’s saving up for his own New York Rangers mini-plan, i.e., quarter-season tickets.

Plainly I had selected the world’s best 14-year-old to watch Martin.

It was time for me to leave. I kissed Martin goodbye and waited for him to wage his protest.

Only—he didn’t. He said ’bye and wandered into the family room with Justin.

I headed to Manhattan. I drove, instead of taking the train, just in case some emergency arose and I had to return home quickly. I told our dinner companions that Martin was at home with a teenage babysitter. They asked if I wanted to text Justin to check the situation at home. Adrian saw that I was nervous, and asked if I wanted to text Justin to check on the situation at home.

No, I said. I’m good. I’m going to let this run and see what happens. I left my phone on the table, next to my plate.

Under the table, I fidgeted.

In my head, I prayed.

Superficially, I chatted. And dinner elapsed.

Adrian and I arrived home at 10:40 pm. I entered the house tentatively. Would Justin be crying? Would Martin be running amok? Perhaps something would be on fire? We came in through the garage. I tiptoed into the kitchen and peeked—I’m serious: I peeked, and not without trepidation—into the family room.

Justin was doing some schoolwork he’d brought. He had the Rangers game on the television.

The rest of the house was peaceful.

No screaming. No blood stains, ambulances, or fire trucks.

“It went fine,” Justin reported with a shrug. A shrug! “He’s been sleeping since about 8:30.”

Adrian and I looked at each other. Had it really been that easy?

Apparently it had. I asked Justin how much we owed him, paid, and watched him walk next door.

That was that.

With Samara the nanny still away, Justin has babysat Martin two more evenings. Each visit requires hours of preparation. Supplements and exercises done in advance. Martin pre-fed. The household perfected.

And each hour of preparation has been exquisitely worthwhile, for Adrian and I have finally been able to enjoy what parents of typically developing kids might take for granted: the neighborhood teenage babysitter.

No, that’s not Martin. It’s just that—well, I do so love the Rangers.

More Civility

Posted on April 13, 2014 by findingmykid

Last year I took Martin to a friend’s sixth-birthday party. I talked to the birthday boy’s mom in advance and knew they were serving pizza. For Martin I brought homemade GFCFSF pizza and cookies.

I thought Martin would be happy with those choices. With the pizza, he was. I heated it in the hostess’s oven and served it on a party plate, just like the other kids’ pizza. Unfortunately, the situation went south when cake time rolled around. Martin didn’t want just any treat. He wanted the cake. And when he didn’t get cake, he went into meltdown mode.

I might give in to something like a non-organic apple. But I don’t concede gluten-, dairy-, and sugar-laden cake. I picked up my screaming kid and moved to another room, where I held Martin on my lap and tried to calm him with promises of a special cupcake when we got home. (I would gladly have stopped at blessed Babycakes, which sells cupcakes that are free from gluten, dairy, corn, soy, and refined sugar.)

Martin was having none of my peacemaking. He cried and wheezed, inconsolable. At this point, another mother, whom I never had met, entered the room and asked, “What’s the problem?”

“My son is upset because it isn’t a cake he can eat,” I replied.

The stranger came closer and said, directly into my ear, “Just tell him you’re taking his piece home for him to eat there. By the time you get home, he’ll forget about it.”

I had a child on my lap near hyperventilation. This was not the time to explain that I don’t follow lie-now-and-hope-he-forgets approach to parenting. So I replied, “I wish I could, but he remembers everything.”

This woman was not to be deterred, neither by my blow-off attempt nor by Martin’s tears. “What is he, gluten-free?” she asked. “Why don’t you give him some of the ice cream?”

Her voice was loud so I could hear her over the racket, and her tone was sharp so I would know that she didn’t approve of a gluten-free diet.

“It’s harder than that,” I said, trying to sound sheepish so she would leave and let me return my attention to Martin. “He doesn’t eat gluten or dairy or refined sugar.”

I didn’t bother adding soy, corn, starches, most carbohydrates and fruits, non-organic or processed foods, or preservatives to the list of what Martin doesn’t eat. No matter. Apparently gluten, dairy, and refined sugar were enough to earn this stranger’s condemnation. She said, “Oh my God.” Then she rolled her eyes, turned her back to me, and walked away.

So I got what I wanted: She left us alone, letting me return to comforting Martin.

The rudeness I could have done without. Also, the particular phrase she chose, which is offensive to me.

Most of the children attending the birthday party had special needs. Later, after Martin calmed down, I saw this woman with her son. He wore ankle braces and hearing aids, and he engaged in atypical behaviors. Our conversation had been special-needs-parent-to-special-needs-parent, but it sure didn’t feel that way.

What went wrong at the birthday party? First, it was a terrible time to discuss anything. Martin was in full meltdown mode. The stranger could have said, “You have the most intriguing eyes I’ve ever seen, and I would kill for a figure like yours,” and still I probably would have tried to blow her off. Second, she was plainly unwilling to think outside her own box. Really, I don’t even think she wanted to help. She wanted to judge.

Let’s compare to a conversation in which I found myself a few weeks later. This one happened after a meeting of our district’s special-education PTA, when parents were hanging around to mingle. I ended up talking with a woman who introduced herself as the mother of an 11-year-old with Asperger’s. When she asked about Martin, I said that he has made enough progress that I’m not sure whether to say “autism,” “high-functioning autism,” “Asperger’s,” or something else. She asked about what therapies have helped the most. I replied that we do biomedical and homeopathic interventions, and that those, combined with a restricted diet, seem to have made the difference.

We talked some about Martin’s diet. Then the mother said, “I think a lot of so-called autism remedies are snake oil, people trading on hope and desperation.”

I replied that she has a point. Even after years on the biomedical path, I find it hard to distinguish between legitimate interventions and unsupported promises. I try not to let it get me down. I hire and rely on experienced doctors, and I do as much research as I can manage.

The mother asked, “Do you do the dangerous stuff, like chelation?”

I replied that we haven’t chelated yet but plan to; that from what I know, chelation is safe if done properly; and that, in terms of which interventions have relieved autistic symptoms, chelation rates highest in parental reports.

She said, “I hear what you’re saying. But people who say you can treat autism are the same people who say vaccines cause autism. Do you believe that?”

I replied that I think the strict cause-effect narrative has undermined legitimate debate about vaccines. Everyone knows that vaccines are dangerous for a child with a compromised immune system—that’s why parents are told not to bring a child for shots when she has, for example, a cold or an infection, and why a child undergoing chemotherapy cannot be vaccinated. Autism, I said, is the symptoms of an underlying immune disorder, often with a genetic component. The immune disorder may exist before the symptoms manifest. If a child is asymptomatic, his parents and doctors may not recognize the immuno-problems, and they may therefore go ahead and vaccinate. The vaccine, in turn, causes the already compromised immune system to go haywire, and then the symptoms manifest. In such a scenario, the vaccine didn’t “cause” the autism, but it did exacerbate the pre-existing immune disorder and cause the symptoms (i.e., the autism) to appear.

The Asperger’s mother listened to my entire monologue. When I finished, she boosted my ego a little by saying, “You know, you’re the first person who’s ever told me about a link between autism and vaccines without sounding insane.”

We talked for 20 or 30 minutes, this mother and I. Don’t worry! It wasn’t all me rambling on. She knew tons about navigating the special-education system, and I grilled her for tips. We ended up exchanging numbers and thanking each other for the shared insight.

Did I convince this mother to begin biomed with her 11-year-old? Probably not. Did we have a positive interaction? Definitely. Unlike at the birthday party, the special-education PTA event was the right time to discuss helping our children, and the mother I met was curious and open-minded.

Civility is out there.

Even if it doesn’t always seem that way.

Civility

Posted on April 11, 2014 by findingmykid

I know that I should stay off social media, other than maybe the autism-recovery groups I enjoy.

I definitely know that I should refrain from taking the bait when people post uninformed opinions on topics about which I have, well, more informed opinions.

If you read this blog, you probably have thoughts about vaccines. I do. I’ve posted about the link that I think exists between vaccines and the symptoms of autoimmune disorders, symptoms like “autism.” It’s such a controversial topic. I try to read as much about vaccines, on both sides of the issue, as my schedule allows.

Which makes me ripe for a bad Facebook experience. I made the mistake of responding to a post by a guy I knew well in college and now know only through Facebook.

This Facebooker, the guy I know, posted an opinion piece deriding “anti-vaxx” celebrities. (“Anti-vaxx” was used in the posted piece. It’s not my term. I don’t think raising efficacy or complications concerns, or questioning ingredients, is necessarily “anti-” vaccinations). Beneath the link to the opinion piece, the Facebooker said something like, “It is a sad commentary on our society when people are willing to accept celebrity ‘opinion’ over scientific fact.” He then went on to compare “anti-vaxxers” to people who deny evolution or global climate change.

Within the comment thread under his post, the Facebooker asserted, without citation, that “any link between vaccines and autism has been scientifically disproven.”

Best course for me to take in such a situation: turn off Facebook and walk away.

Course I did take, this one time: I commented. I wrote:

“Can you point me to the study that you are referencing? I’m not advocating one way or the other. I am aware of studies suggesting the absence of a link, and of studies noting that vaccinations can cause neuro-disruptions. But I’m not aware of any study that compares autism rates in vaccinated versus unvaccinated populations.”

Then, lest anyone think I have a connection to autism (we’re not public about Martin’s diagnosis), I added:

“I am concerned about this topic because at age 12 I was very sick with measles, despite having been twice vaccinated against it.”

What did I want to achieve by commenting? I don’t know. I was frustrated. The Facebooker’s comment made no sense, empirically or otherwise. We cannot “scientifically disprove” a link between any two occurrences; the most we can do is, while attempting to control for other variables, demonstrate that the occurrences arise no more often in conjunction than they do independently. In the case of autism and vaccines, I know, that rigorous work has not been done. This Facebooker was carelessly spouting an untruth.

In seconds, without thought or ceremony, he responded: “There. Is. No. Fucking. LINK. NONE. STOP.”

And I, shocked, wrote: “Um, okay. That sounds scientific.”

Most of this is likely not verbatim. I recall, exactly, his comment, “There. Is. No. Fucking. LINK. NONE. STOP”—periods, explicative, and all. As for the rest, I am recreating the conversation. Immediately after I wrote, “Um, okay. That sounds scientific,” the Facebooker deleted the link and the comment thread, and replaced it with this status update:

“You’re not going to spoil my happy today. Period.”

Under that “spoil my happy” status came this comment thread:

Random commentator: “Oh, see now… someone’s going to try!”

Facebooker I know: “Already has. Why do you think I posted it? What it comes down to is this. To the world: As much as you are obviously in love with your own opinions, I DON’T CARE!!!!!! You may not care about my opinions either. That’s fine. No skin off my nose. BUT I DON’T CARE!!!!!!!!!”

Random commentator: “Ah, see, I almost had a sarcastic comment for your last post.”

Facebooker I know: “I swear to God, you could post that 1+1=2 and there’s going to be someone who argues with you. Not having it.”

Wow, right? This Facebooker, as I said, is a guy I knew in college. I’ve seen him once since college, when he was in New York a year or two ago, and we had a nice lunch to catch up. No prior animosity. Nothing. That explosive reaction resulted, as far as I know, 100% from my question about “scientific disproof” of a connection between vaccines and autism.

I commented no more. Instead, I took my boldest Facebook action ever. I stopped “following” the guy. I didn’t go so far as to unfriend him. Unfriending just isn’t in my nature. But now that I’ve stopped following him, his posts no longer appear in my news feed.

It’s justified. Around when Demi Moore was separating from Ashton Kutcher, this Facebooker posted a picture purporting to show cellulite on Demi’s legs and chastising her for not spending enough time on a treadmill. As if women don’t have enough trouble with body image! Demi Moore weighs, like, 70 pounds. Then, during the 2012 NFL referee lockout, when the league used less-experienced substitutes, this Facebooker complained about a game by posting something like, “These replacement refs are really ‘special,’ and I don’t mean that in a good way.” You see the problem there: He’s implying that the referees have special needs, which is “bad” and appropriate for ridicule. The way I see it, the vaccine incident was strike three, and this Facebooker is out. Or at least un-followed.

There’s a real shame in this story. In the original “anti-vaxxers” link and comments—the thread that the Facebooker deleted because he was “not having” any “argument”—there was a comment from a third-party who self-identified as a person with autism. She wrote something like, “Even if there were a link between vaccines and autism, people who abstain are suggesting that they would rather lose a child to preventable disease than have a child like me.” I would have appreciated the opportunity to follow up and engage that person further.

No such luck. Some topics, it seems, are just no longer available for discussion.

School Food

Posted on April 10, 2014 by findingmykid

In the month since I put Martin on full GAPS diet, I think, the question I have heard most from parents is, “What food do you send for school?”

Martin’s school requires that each parent send lunch and two snacks. This morning, for Martin’s snacks, I packed (1) lime pudding, made from avocado, manuka honey, vanilla extract, and lime juice; and (2) half a pear, sliced and dredged with lemon juice. Last week I posted a picture of a dippin’ plate with carrots, peppers, and pear. The GAPS diet advises that fruit be eaten away from meals, because fruit enzymes work better alone. So, to the extent Martin eats fruit (I try to limit fruit, because he has so much trouble with yeast flares, which can be fed by sugar), I give it as a snack.

For Martin’s lunch, I packed his LunchBots container with (1) chicken breast with Himalayan pink salt; (2) avocado (I do a lot with avocado) mashed with cultured garlic, which you may remember from the “dippin’ plate”; (3) probiotic Zing! salad; and (4) raw cauliflower florets.

I have been trouble getting Martin to eat raw vegetables. That’s a shame. Raw veggies are full of good digestive enzymes, and they might help loosen his front-bottom baby teeth, which I want to do because the adult teeth already have broken through behind them. I predicted the LunchBot would come home with the chicken and avocado gone, the Zing! salad mostly eaten, and the cauliflower untouched.

Do I know my son, or what? I was wrong only insofar as he took, maybe, one or two pieces of the cauliflower.

Not a total success, but, hey.

Some other lunch combinations are bison jerky with homemade probiotic catsup and sauerkraut; chicken-and-egg bread with spread made from sprouted (i.e., soaked overnight before cooking) lima beans, olive oil, and garlic; or the ever-popular “meat and veggies,” i.e., whatever leftover meat is in my fridge paired with whatever fermented veggies are in my fridge.

Oh, yes. Before anyone writes it as a comment, I will address what all readers must be thinking right now: Martin’s mom has a real Gwyneth Paltrow thing going on here if she thinks any of this is reasonable.

Trust me—I know. I mean, “homemade probiotic catsup”? Who does that?

Autism-recovery folks do, I guess.

Finding My Kid

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

Tag Archives: autism