Category Archives: Therapies

Hurray for the Detox

Posted on by findingmykid
5

Three months ago, I wrote a post titled, “Take Heart. There Is Also More Than I Can Manage,” in which I described (1) believing that Martin needed a better detox protocol, and (2) feeling certain that we could not manage a protocol I found on the Recovering Kids/Regarding Caroline blog. I concluded by compiling an abbreviated—and still “aspirational”—plan for Martin:

  1. A foot bath during iPad time at least four days per week.
  2. Dry brushing Saturday (or Sunday), Wednesday, and Friday.
  3. Herx water before breakfast and after school.

I’m here to report that the abbreviated detox plan has been so successful for Martin that we now exceed the aspirations. He gets the foot bath four days per week. With limited exceptions, we are dry brushing every day, and Martin drinks herx water before breakfast, after school, and again before bed. Depending on how the day is going, I might even slip in a fourth herx water.

As to the dry brushing, the nightly routine arose through his own initiative. The first time we undertook the brushing, I expected him to get bored or frustrated. Instead, he stood patiently and asked to help me count the brush strokes: “one, two, three, four, five, six, one, two, three, four, five six.” I took a break the next two nights, not wanting to “overdo” the new routine. On the third day, Martin remarked, “Remember the brushing thing? We should do that again.” So we dry-brushed that evening, and Martin said, “We should do this every night.” Since then, he becomes agitated if I’m home and we miss a night.

As to the foot baths (which he tolerates) and the herx water (which he despises), the proof has been in the pudding. I wanted a new detox routine because of Martin’s constant silliness, which was impeding his social progress. When Martin is detox-y, he cannot control his laughing and his calling out, even when he knows the behavior is inappropriate. (This happens also when he’s yeasty, which I could tell was not the primary issue in January.) The silliness decreased almost as soon as we started daily dry brushing and, as of today I would estimate that the decrease is about 90%. Martin’s increased self-control has even led to a couple social breakthroughs. He’s made a few friends at school. The school behaviorist, whom I like to call Debbie Downer because she shares so much negative news, sent me these texts yesterday:

Hi. All good reports. Minimal silliness this week. More peers going to Martin and interacting with him.

Data are looking good, and consistent. Will be picking new targets but need to think about them, as he’s doing well. Pace of unpacking and packing [his backpack] up.

Remember when I told you that you know when a kid makes it when everybody else starts to copy them? Well they’re starting to copy some of the things that Martin does.

All good news! What are they copying?

Some of the silly behavior. Blurting out “Mister Poopy Pants” or something like that from Captain Underpants, or calling out “ice cream” just out of the blue.

They think it’s funny so they do it as well.

            Oh . . . fab . . . .

Yes. Teacher loves it, lol.

Of course, despite these advances, life is no bed of roses. It never is. Those his self-control has improved in almost every other area, Martin remains fixated on a girl from his taekwondo class, Abby. He can’s seem to stop bothering poor Abby, alternately calling her cute and ugly, pushing her, running into her. When I confront him, he cries and says, “I don’t know why I do it! I just can’t control myself around Abby!”

Also, Martin’s skin is a mess, even worse than before we started the detox protocol. I think clearing pores and stimulating the lymphatic system, which dry brushing is designed to do, makes something I wrote six years ago just as true today: “[Martin’s] digestive tract isn’t as good as it should be at spitting out bad stuff, so his skin overcompensates.” He picks at the scratches, sores, and tiny bumps covering his limbs. I avoid the spots carefully when dry brushing. The weather has remained chilly this spring, so I have him wear long sleeves to school, but that won’t last forever. The school nurse already phoned me once to say Martin couldn’t stop scratching his arms. I attributed the behavior to dry skin, because really, how am I supposed to explain to a traditional school nurse that antimicrobial killing of bartonella and babesia can produce a lot of toxins, which we are managing through an extensive daily protocol? It’s hard enough to explain the whole thing to you, dear readers, and I know you are educated sorts.

Attention-Deficit Hyperactivity Disorder (ADHD)

Posted on by findingmykid
13

Because we are thinking about changing Martin’s school placement, Adrian and I decided to order a new neuropsychological educational assessment (a “neuropsych”). Martin also had a neuropsych three years ago, before he entered kindergarten, and last year. Those first two neuropsychs were completed by Dr. DS, a practitioner in Manhattan. This time we switched to Dr. PS, a practitioner in a suburb near ours, who knows our local schools and who had never before met Martin. Dr. DS and Dr. PS are mainstream neurodevelopmental psychiatrists, not biomed practitioners. Before Dr. PS started her testing, I enumerated Martin’s issues at this time: paying attention, sitting still, emotional regulation. I did not say “autism,” though she certainly must have seen that word on the previous neuropsychs and the school records I provided.

We had our parent meeting with Dr. PS last week, after she’d had three lengthy testing sessions with Martin. She told us that Martin’s primary trouble lies in executive functioning. She diagnosed him with ADHD, compounded by social/pragmatic language delays.

She didn’t mention “autism.”

Adrian asked, “You’re saying he has attention deficit and hyperactivity?”

Dr. PS answered, “Really, hyperactivity is a minor part. The primary issue is attention deficit, this inability to focus. That stems from the executive functioning and affects his performance in many areas, including school.”

Adrian is Adrian. He likes concrete, definitive responses. He asked, immediately, “Um, why don’t you think Martin has autism?”—not the question I would have posed. I like to leave well enough alone.

Dr. PS said that different practitioners come at executive functioning in different ways. Martin, she said, presents with “a little bit of this, and a little bit of that,” such that, perhaps, a doctor focused on autism might find a mild spectrum disorder. In Dr. PS’s opinion, however, Martin “does not meet the diagnostic criteria for autism spectrum disorder.” He presents much more strongly as a child with attention deficits. True, he retains difficulties with social/pragmatic language, but he is eager to socialize and keenly aware of others. No, she concluded, he doesn’t have autism.

“So,” I said to Adrian as we climbed into bed that night, “we don’t have a son with autism anymore.”

Adrian paused. Then he replied, “I guess we’ve known that for a while.”

I guess we have.

Martin can express himself, now. Martin doesn’t really have repetitive behaviors, anymore. Martin’s perseveration, which once was literal inability to stop speaking, has faded to a penchant for prattling about obscure topics, like marching bands and features of my car’s dashboard. Martin knows exactly what other kids are up to. He won’t let me affix a sport strap to his glasses anymore, because “Zach and John don’t have straps on their glasses.” Martin is awkward, socially, and his attention span has the half-life of hydrogen-7. But “autism”? These days, that seems too harsh.

On the other hand, it feels strange—to say I don’t have a son with autism. We still have a lot of work to do with Martin’s executive functioning, and the spectrum has been a driving component of our life, even of my own identity. We socialize with other autism families. We swap articles about autism. I even pre-board airplanes, on the basis that “my son has autism.” (The pre-boarding will have to stop. I will let airline attendants draw their own inferences, but I won’t lie.) Autism, autism, autism. What do I do now? Find ADHD friends?

Adrian and I have never been public about Martin’s diagnosis. Indeed, we’ve gone to lengths to hide his autism. In part, that’s because “autism” is a scary word. ADHD or ADD, not so scary. People seem to love to self-diagnosis with ADD. Maybe now we can go public with that moniker.

Almost six years ago—the summer that Martin turned two—was when Adrian and I started to realize that Martin had “issues.” Other kids blew out the candles on their birthday cakes. Martin stared into the abyss over his own cake. (We later discovered he lacked the ability to pucker, or to blow.) In the toddler soccer program, when the coach said, “Run and kick a cone,” nine kids ran and kicked a cone. Martin wandered to the next field and tipped over the goal.

By that fall, we were sufficiently concerned to ask a high-school friend of mine, an EI provider, to come take a look at Martin. She did, and she knew immediately that he had autism. The first psychologist, sent by New York City only a couple weeks after my friend saw Martin, said, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.” But though Adrian and I didn’t realize it, Martin was backsliding. He had already lost eye contact and was becoming less responsive every day. By the time the Big Imposing Hospital’s neurodevelopmental team got hold of Martin, several months later, there was no mention of “high-functioning” or “Asperger’s.” They diagnosed Martin with moderate autism and threw in the kitchen sink of co-conditions: delays in every type of communication, low muscle tone and lack of proprioceptive awareness, sleep disorder, possible cognitive impairment, and on, and on, and on.

Let’s call that the low point.

Fortunately, we had already started biomed and the tedious brick-by-brick struggle to free our son from autism.

When he was three, Martin’s special-needs preschool removed him from a self-contained 12-1-1 classroom (12 special-ed students, one teacher, one aide) based on his need for more supervision, and his inability to keep up with the other developmentally delayed three-year-olds. The school placed him instead in an 8-1-2 classroom, in which two other students had 1-on-1 aides (in total, eight special-ed students, one teacher, two classroom aides, and two dedicated aides). Martin was left in that classroom for two years.

When it came time to find a kindergarten—we lived in New York City, where kids don’t just go to the local school, as they might elsewhere—we had Martin’s first neuropsych done. Dr. DS, the Manhattan neurodevelopmental psychologist, confirmed the autism diagnosis as “not a close call.” He told us that our desired elementary school, which has 12-student special-ed classrooms, would not provide enough support for Martin, and would be likely too advanced, academically. He said we were “really looking more at a need for 1-on-1 support” or a six-student ABA classroom.

Forget that, Adrian and I decided. When the desired school, with the 12-student classrooms, accepted Martin, we sent him there. And he excelled.

Two years later, before second grade, it was time for another neuropsych. To get a reasonably comparative assessment, we brought Martin back to Dr. DS.

Dr. DS admitted that he had been mistaken to think Martin wouldn’t make it at our chosen school. In fact, Dr. DS was not so sure Martin still needed all the support the school offered. “I’ve seen some remarkable progress,” Dr. DS said when he presented us with Martin’s report. Martin had moved from the third percentile to the 83rd percentile in receptive language, for example, and though the autism was still prevalent, he had made tremendous gains in other areas, too. What were we doing?

I told Dr. DS about our biomed protocol and nontraditional therapies, like HANDLE and Anat Baniel Method. He listened. At least he appeared to listen. When I finished, Adrian asked Dr. DS what our next steps should be, and Dr. DS said, “Medicate Martin. Now is a good time to start experimenting with medications, so that by the time he reaches third grade, when the curriculum becomes more advanced, you will already know the best combination and dosage of medications, whether it’s depressants, stimulants, or something else.”

Thank you, Dr. DS!

Another year passed, and this time we brought Martin to suburban Dr. PS, who opined that autism spectrum disorder is no longer the correct diagnosis for Martin. She said that her testing revealed an upward trajectory from Dr. DS’s reports. While Martin once had significant delays in all four areas of language, Dr. PS said, he now exhibited delay only in pragmatic/social language. “So looking at his history,” she said, “we can see that Martin was not destined to be a child with receptive or expressive language problems, as those have faded away.”

Destiny? I asked myself. Destiny didn’t resolve Martin’s receptive and expressive language delays. Biomed did.

“What should we be thinking about for next year?” Adrian asked.

Three components, said Dr. PS. First, the choice of school setting. Second, additional therapies and resources. And third, medication. It’s time to start experimenting to find the best medication for Martin’s ADHD.

I’m tempted to write, Thank you, Dr. PS! There’s an addendum, however. I told Dr. PS that we are “hesitant” to medicate Martin because doing so would interfere with our biomed protocol. The progress we’ve made, I explained, has resulted from a restricted diet, supplementation, and constant reevaluation of Martin’s health needs. Dr. PS—remember, she’s a mainstream neurodevelopmental psychiatrist—asked pertinent questions, like what kind of doctor we see and whether the protocol is test-based. (There are charlatans in the autism-recovery universe. I know that.) After I provided sufficient reassurance on those points, Dr. PS said we are probably right not to medicate at this time. If what we are doing biomedically is working, she said, then we should exhaust that route. Experimenting with medication does not have a time limit, and it is okay to start later.

So, actually, really, thank you, Dr. PS. Thank you for listening and reconsidering.

And, for my readers, especially my long-term readers, here’s a special tidbit: Do you remember my lengthy post about Mr. and Mrs. Twice-Exceptional, the Quirky Genius School, and the movie The Imitation Game? You might want to revisit that one.

As she was reviewing Martin’s test scores with us, Dr. PS pointed out a wide discrepancy in the different fields. In many academic areas, including reasoning and some language-based tasks, Martin’s scores were at the top of the bell curve, well above the average range. He uses his formidable intellect and those stand-out skills, Dr. PS said, to compensate for his still subpar executive functioning.

“You see,” Dr. PS told us, “your son is what we refer to as ‘twice-exceptional’.”

So Here’s Something New We’re Going to Try

Posted on by findingmykid
13

Martin retains significant sensory processing issues. Distant background noises distract him; several times a day, he asks, “Mommy, do you hear a helicopter?” or “Mommy, do you hear that airplane?”, and I do hear the aircraft, but only after I stop my other activities and listen carefully. His eyes, on the other hand, never seem to chase sounds; he hears but doesn’t look. Nor do his eyes guide his hands, at least not well. If I lob a ball to him, the ball bounces off his chest before he brings his arms together to catch, even when his eyes appear to be focused on me or to track the ball. And he’s clumsy. Very clumsy, which I think results from the double-whammy of mitochondrial disorder and sensory processing challenges.

I believe Martin would benefit from audio and/or vision therapy. His HANDLE therapist has been recommending for more than a year that I pursue these therapies, and although I trust her intuition, the time has never seemed quite right until this summer. This summer, after Martin’s language made some real progress, I thought: Well, language is finally getting close, and yet he still has the attention span of a fruit fly. If Martin is going to make significant progress in socializing, or moving toward mainstream school, we’ve got to find a way to make him attend. Getting his senses to cooperate could be a key component. I mean, how can he concentrate if any random stimulus distracts him, or if messages get lost between his eyes and his hands?

I started searching for the right therapist. I did not find him/her. The problem, from my point of view, was that the service providers offered either vision therapy (addressing issues like tracking or overreliance on peripheral vision) or audio therapy (addressing issues like sound distortion and sensitivity). Martin, on the other hand, seems to need help connecting his vision, hearing, and fine motor skills. Integrating.

Six weeks ago I paid a visit to a Central New Jersey mom-friend, whom I’ll call Lakshmi. Lakshmi’s son, Partha, is six years old like Martin, and I’ve known him since he was three, not long after he suffered a regression and lost all language following a vaccination. Partha, I would say, is 90% recovered. Strangers who meet him don’t realize he used to have autism, and he is completing first grade at a mainstream private school with no accommodation other than extra help in handwriting and the speed of his work. Lakshmi has worked miracles repairing the damage Partha suffered.

I was lamenting my fruitless attempts to find a therapy that I believed would address Martin’s integration as much as his vision or hearing. Lakshmi knew just the thing, she said, and described excitedly the improvements in Partha’s attention once they started working with Dr. Deborah Zelinsky, an optometrist who specializes in neural aspects of visual processing. As Lakshmi described the exercises Dr. Zelinsky had done with Partha, and what she had prescribed, I realized I might finally have found the “vision+” therapy I was hunting.

The next day or two I read more about Dr. Zelinsky’s work, including her development of the “Z-Bell test” to measure mismatches between visual and auditory processing, i.e., to figure out why a child might be seeing well and hearing well, but not seeing and hearing well together. Then I phoned and made an initial appointment for Martin. We had to wait a while. Now the appointment is getting close. In less than two weeks, Martin and I will travel to Chicago to meet with Dr. Zelinsky.

I am guardedly optimistic. At some point, once the diet is what it should be and an appropriate educational setting is found and the caregiver takes a few deep breaths, the process of autism recovery becomes a slow assembly line of trying this and trying that to see what sticks.

Soon I’ll find out whether Dr. Zelinsky’s visual processing therapy sticks.

Link of the Day

Posted on by findingmykid
1

Through the community that is Autism Parenting in the New York City Area (“APNYCA.” I just coined the acronym. You saw it here first.), I know a mother who is a recent and enthusiastic arrival in biomed. She’s started a blog and posted about her son’s experience with hippotherapy. I’ve seen the progress her Jaeden is making, and I like the forum she’s creating. Full Spectrum Essentials—it’s worth a look.

Go, Diva!

Posted on by findingmykid
Reply

For the week between Christmas and New Year’s, we rented a condominium in a Florida Keys resort. (That’s the way our family rolls, with Martin’s dietary restrictions—vacationing only where we have a fully equipped kitchen to use and organic groceries nearby.) Martin was allowed to bring two stuffed animals. He chose (1) “Boo,” a preposterous Santa-hat-wearing dog he received for Christmas, and (2) a brown bear that had arrived in a lovely gift basket for the family.

“Martin,” I asked as we drove to LaGuardia, “what is the bear’s name?” Martin sat in his booster seat, clutching both stuffed animals. I figured he should get first crack at naming the bear.

To my surprise, Martin had an immediate response. “Goadie Va,” he said, or something similar. Goat Eva? Go, Diva? Was he talking to me? Am I a diva?

“Goadie Va?” Adrian asked, from the driver’s seat.

“Goadie Va,” Martin replied, with certainty. 

Adrian and I looked at each other. I made a who-the-hell-knows kind of shrug and said, “Okay, the bear’s name is Goadie Va.” No further discussion on the name was had, as our family, Boo and Goadie Va in tow, headed south. 

Behavioral therapy for autism often stresses acting neurotypical and giving a child the tools for participating, even marginally, in a neurotypical-dominant world. Certainly that was my experience with ABA, a technique that only frustrated Martin. Although Martin spent only a couple months in ABA—I found the therapy almost useless (for us), and we abandoned it for RDI—I may have internalized too much of the message that Martin should be instructed to act a certain way. To this day, I find myself saying, “Let’s try that again,” until Martin evinces a satisfactorily neurotypical effort.

“Martin, that man said hi to you. How should you respond? I’m sorry? Let’s try that again.”

“Martin, you walk through the doorway. You don’t flop through it. Let’s stand up and try that again.”

“Martin, you sit at the dinner table. No leaving your seat to jump up and down or touch the clock. Let’s try that again.”

There are approaches to treating ASD premised on the idea of joining an autistic child in his own worldview. The best-known among these approaches is probably The Son-Rise Program®. Son-Rise is not a therapy we’ve tried, so what I know comes from reading and from communicating with families who do participate in the program.

According to the Son-Rise website, “Joining in a child’s repetitive and ritualistic behaviors supplies the key to unlocking the mystery of these behaviors and facilitates eye contact, social development and the inclusion of others in play.” In the midst of my over-used “Let’s try that again” orders, I ponder the Son-Rise argument. Take, for instance, my telling Martin not to run from the family room to the front hall, touch the front door, run back to the family room, fall onto the sofa, and then start over again. Would Martin and I better enjoy our time together if, instead, I ran with him from the family room to the front hall, and touched the front door, and ran back to the family room, and fell onto the sofa, and then started over again, all by his side? Would he trust me more? Would I be more his ally, and less a monotonous dictator?

Martin hauled Boo and Goadie Va all over the Florida Keys, from the Hemingway House to parasailing in Islamorada. He slept with them every night, and provided regular updates on their preferences, such as, “Goadie Va wants to wait in the car. Boo will come in the store.” Never once did he call the bear anything other than Goadie Va. I chalked it up to Martin finding a quirky sound (“Goadie Va. Go, diva!”) and fixating on the sound.

Near the end of our trip, for the first time, I noticed Goadie Va’s right paw. Stitched on the paw pad, clearly and adorably, was the name “Godiva.” Of course, Godiva. Goadie Va had arrived in a Godiva gift basket at Christmas. Martin can read. If a bear has a name stitched on his paw, obviously—duh!—that’s the bear’s name.

I almost never spend time in Martin’s world, almost never try to adopt his black-and-white Weltanschauung. I wonder: In my relentless advocacy for neurotypical behavior, how much am I missing?

Why, Hello Again

Posted on by findingmykid
12

How does one restart blogging?

I’ve been thinking about that. Mostly while lying awake at night and also wondering why the [redacted] I’m not blogging. But still.

And ta-da!: The plan I’ve conjured, the blogging redux after seasons of silence:

An update.

I’ll offer my readers—in the event I retain any—tidbits about where we stand now, and then, my blog restarted, I’ll pretend like I never was away.

1. We’ve left the City for the suburbs. New York, New York, no more. We moved June 4 to a ranch house, situated on 1.15 acres in a town where many of our neighbors prefer another NHL team to the New York Rangers. An autism diagnosis was one thing. This kind of upheaval—it’s disconcerting, to say the least.

2. Martin attends kindergarten at a private school for children with learning differences. His class has twelve pupils and multiple instructors. Adrian and I feel extremely lucky that Martin has the chance to attend such a school, never more so than this past weekend, when we attended one classmate’s birthday party and watched Martin frolic with his new best friends.

3. Martin receives traditional occupational, physical, and speech therapy at his school. Saturday mornings I drive him into the City for two sessions of Anat Baniel Method (ABM) therapy. We continue working with a HANDLE therapist, and doing home-based exercises activities on the RDI approach. One evening per week Martin takes piano and drum lessons (the latter by his own initiative) with a certified music therapist.

4. We have not yet recovered Martin. We have, however, made progress, and a good deal of it:

•            Though he retains some patterns, Martin’s speech is rarely rote anymore. He has some quirks, such as substituting “but because” for “because” and adding “for” where it doesn’t belong, as in, “Can I have a piece of paper for to draw a picture on it?” Nonetheless, he can express his wishes, wants, and needs verbally, and well.

•            Martin can engage in conversation of six or more exchanges, so long as he is answering the questions (not asking them, which is a level higher). Here is an exemplar talk, which we had when he arrived home one day last week:

“How was school today?”

“It was good.”

“Did anything special happen?”

“We had a surprise reader!”

“Oh, yeah! Who was the surprise reader?”

“It was Quinn’s family.”

“Quinn’s family? His whole family came, not just his mommy or daddy?”

“His whole family came.”

“Wow! What was the book about?”

“It was about snowmen.”

“Did you like it?”

“Yes. I liked it. We made snowmen!”

Note that Martin, who once just “said things,” was speaking accurately. I confirmed later that Quinn’s mother, father, and older sister had all come to do the surprise reading, that they’d read a book about snowmen, and that they’d helped the class with a snowman-making craft project.

•            Lethargy is a thing of the past, and Martin’s “floppiness”—his tendency to fall onto anything within reach—diminishes every day. His core strength has improved, insofar as he is as likely to sit up as to slouch. His manual dexterity is such that he grips a pen appropriately for writing and drawing, he can manipulate small items like pills, and he uses his hands independently for drumming. (That last achievement might not pertain to dexterity per se.)

•            Martin takes a keen interest in his peers: what they eat, how they play, the structure of their families, where they live. He requests play dates. What he still lacks is a solid understanding of how to interact with friends. We’re working on that.

We vacationed recently at a resort area. When Martin was having trouble engaging any other child there, I would approach the child’s parent and say something like, “I think my son would like to play with yours. My son has Asperger’s, and he’s never quite sure how to go about making new friends.” “Aperger’s” sounds much less scary than that other A word, I think it’s pretty accurate for where Martin is now, and the parents I approached responded uniformly positively. Martin made a couple of “vacation friends” that way.

5. Martin still exhibits “autism” behaviors. He perseverates. A lot. This has been an issue forever. Right now he prattles endlessly about traffic lights, hair length, the time, and the moon. He also has three prominent stims (self-stimulatory behaviors), which become more pronounced when he’s tired or detoxing. The stims are running back and forth, making a slurp! sound by sucking air through his lips, and carrying or playing musical instruments. And of course, Martin can be rigid. He wants to wear his blue vest every day, drive one particular route home, read Pete the Cat or Knuffle Bunny books every night.

6. I now understand “the long haul.” I think that, when I started the process of recovering my son, I didn’t really comprehend what how long one might need to haul. The mother who introduced me to biomedical intervention had largely recovered her son within two years, and was done with the process entirely within three years. I failed to grasp that her family’s timing was exceptional. I thought that by kindergarten we’d be done.

My family has been at this three years now, chipping away at the underlying health issues that exhibit themselves as “autism” in Martin. My son has made staggering process. If we never achieve anything more, I will know that our time and money have been well spent. Still, he is not recovered, and much work remains. Fortunately, I no longer fear that some mythical window will close while Martin is five (he’s five now), or seven, or any age. A mother of a recovered 14-year-old told me recently, “Our best year was when he was 12. Twelve years old is when he made the most progress.” Twelve years old is a long, long way off for Martin. If that turns out to be our best year, so be it. We’ll get there.

7. This year, 2014, is going to be extraordinary. Don’t ask me how I know. I can say this: I woke on January 1 with that feeling, and it has not left me. Martin will hit new milestones, and so will I. This past weekend I met with an old friend from law school. My friend used to work in venture capital but for the last year or two has been searching for a new path, something more creative. I told him that I haven’t been doing much writing, or much of anything else, because I’ve been so focused on Martin’s needs. Without warning, he turned to me and vocalized something I already knew: “2014 is going to be a banner year. For you, for your son, for me. I think this is our year.”

See you soon.

Notes on a Wednesday

Posted on by findingmykid
2

Wednesdays, of late, are exhausting days for me and Martin. He plays hooky from school. We start the morning by driving more than 50 miles to Wilton, Connecticut to visit Martin’s new homeopath and, if it’s an appointment week, his biomedical doctor.

(Note to careful readers: We switched biomedical doctors five months ago, because Martin’s former practitioner moved to the West Coast.)

From Wilton, when our appointments are through, we get back in the car and drive more than 60 miles, back into New York State, across Westchester County and across the Tappen Zee Bridge and Rockland County, at last dropping into New Jersey at Ringwood, where Martin participates in hippotherapy. We eat lunch in the car: a sandwich for me, and Dr. Cow tree nut cheese with rice crackers for Martin. Then, while Martin spends an hour riding horses, I hike to a tiny farm and buy eggs.

Around 3:15 pm Martin and I get back into the car to drive 45 miles home. (Are you keeping track of all these miles?) Although it is the shortest leg of our journey, this takes the longest, anywhere from 90 to 150 minutes, depending on traffic getting back into and through the City.

Last Wednesday, on the morning drive to Wilton, I spent 20 minutes on the phone—hands-free Bluetooth, of course! I respect all traffic laws—trying to negotiate a good deal on the purchase of an infrared sauna. (More on that in a future post.) Martin was supposed to be practicing “being quiet while Mommy’s on the phone.” Instead, he grew increasingly agitated until he was sobbing while repeating, “You’re going to get off the phone! No more phone! You’re done with the phone.” I apologized to the sauna representative and finally, when I could barely hear him over Martin’s shrieking, aborted the call. Meltdown.

So that sucked. But three very cool things that did not suck at all also happened last Wednesday:

The update for Daddy: At the office of the homeopath—“Miss Lauren,” as Martin calls her—is a pile of toys. I was talking with Lauren when Martin appeared with a toy mobile phone in this hand and said, “Mommy, I’ve got a phone.” I replied, “Oh? Would you please call Daddy and let him know we got here okay?” Without further prompting, Martin nodded, hit a few buttons on the toy phone, held it to his ear and said, “Hello, Adrian? But because we’re at Miss Lauren’s. Okay. ’Bye.” (Martin is in a phase wherein he calls Adrian by his first name instead of Daddy or Papá. “But because” is a verbal tic that Martin has.) Comprehending my request? Pretending? Following a direction? Yes, yes, and yes, thank you.

The hippotherapy superstar: Martin does hippotherapy with a speech-language pathologist. Hippotherapy requires body awareness, multisensory activity, and concentration. Martin’s performance varies widely from week to week. (Martin’s performance on just about anything can vary widely from week to week, day to day, or even hour to hour. That’s the nature of the biomedical beast.) Last Wednesday, when I came to claim Martin after his riding lesson, his speech pathologist said, “He was awesome today. Awesome. Can you bring this version of the kid every week?”

The gesture of support: Do you remember my post from last Tuesday, about the best ways to be supportive of a family wading through autism recovery? It ended with these lines:

That’s all we really want, any of us, right?

A little faith, and a cookie.

When Martin and I arrived home from our three-state extravaganza last Wednesday—one day after I posted about how to be supportive—I found a package waiting for me. Inside was a card quoting those two lines. Under them, handwritten by the friend who sent this card, were the words: “Some of us need a whole box of cookies. Prayers to you and your family. Always.” Enclosed with the card? Yep. A box of cookies.

I’ve been reading the Thinking Moms’ Revolution new book of essays. In one piece, the mother of a boy on the spectrum is asking, “Why did this happen to my baby? What did I do wrong? Is God mad at me?” Her mother, the boy’s grandmother, intervenes and points out that, if things had been different, she would not be asking, “Why did God give me a healthy child?”, so she doesn’t get to ask “Why?” now.

Sage advice, right? What happened to my son—the Pitocin, the C-section, the antibiotics, the vaccines, whatever combination caused this autism—happened. But it doesn’t mean my life doesn’t rock steady.

It doesn’t mean I don’t live in a world of blessings.

The Wanaque Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

The Monksville Resevoir in Ringwood, New Jersey, where I hike while Martin rides horses. I took this picture with my iPhone a couple weeks ago. Life is good.

Support. The Supportive Kind

Posted on by findingmykid
7

Friends who know I have a son with autism mean well, but sometimes, even in their effort to be supportive, they say the wrong thing.

Here is the statement I hate most:

“All kids do that.”

Now, if you’re a friend of mine, and you’ve ever said about Martin, “All kids do that,” please do not worry. I know your heart is in the right place. I know you want to help. And this post is not directed at you, or at anyone in particular. Believe me, I’ve heard, “All kids do that,” from almost everyone within the limited circle that knows about Martin’s diagnosis.

I know from reading other blogs that I’m not the only parent who detests “All kids do that.” When someone says, “All kids do that,” then regardless of what that person means to convey, I hear one of two things:

1.      “I know Martin has autism and all, but don’t you think you’re going overboard? Maybe you’re a little hysterical about the whole thing, or you like to complain?”

2.      “I have absolutely no inkling about the realities of your daily life with Martin.”

Yes, I know that even neurotypical kids “have a favorite color.” On the other hand, if you board a subway and find that all the yellow seats are taken, can you expect your neurotypical kid to panic and run out the closing subway doors, without a care whether you are following? If your kid says the moon on his pajama top is yellow, and you suggest it might look more blue, do you assume bedtime will be delayed an hour while he howls inconsolably? Have you ever had to purchase napkins in different colors so that your family could practice sharing the yellows without a meltdown?

And I know that even neurotypical kids “tend to repeat themselves.” On the other hand, unless you live with autism, I am guessing that your kid has never lost awareness and stared into the distance, uttering some combination of words scores of times. I am guessing that your kid does not continue repeating even when he’s alone in a room, his words like a proverbial tree falling in the woods, and then falling again, and then again, and again. I am guessing that your kid’s brain does not get stuck in a groove so deep that he becomes physically unable to cease perseverating. There are times when Martin’s need to repeat himself—“Our President’s name is Obama. O-B-A-M-A. The last letter is A. Obama is the President. Do you know how to spell that? The last letter is A. Our President’s name is Obama. Do you know what our President’s name is? It’s Obama.”—reaches such intensity that, if I were to duct-tape shut his mouth, his arm or leg would have to flail in compensation until he could speak again.

(Don’t panic, dear readers. I’ve never tried any such thing. I just know it’s true.)

“All kids” do a lot of things. But they don’t do them like a kid on the spectrum does.

So what does help? What should someone say, if not “All kids do that”?

A friend of mine (let’s call him Ted) once lost several family members in a house fire. Ted and I lived more than a thousand miles apart at the time, so I wasn’t present for the immediate aftermath or the funeral. A few weeks later, when it was time for me to call, I asked another friend, Deb, what I should say to Ted. Deb is a minister, she’s wise, and her own father had died recently. She counseled (I’m paraphrasing):

“Say you’re sorry about the loss, and then talk about anything else. Follow his lead. When you’re grieving, distraction is a blessing.”

I called Ted and said I was so sorry for his loss and wished we lived closer together. He responded by asking how I was doing, and the conversation moved naturally to catching up on each other’s latest activities. We talked jobs, law (two attorneys, boring!), mutual acquaintances. Once, after a pause in the conversation, Ted said, “You know, they were so close to the door when they collapsed. It was the smoke. They almost made it out,” and I knew that Deb had been right. Ted’s mind was so consumed with loss that the twenty minutes we’d just spent talking about other topics were like a vacation for him. And immediately after saying, “They almost made it out,” Ted asked if I’d seen some movie over the summer. The house fire did not come up again.

When you encounter me, know that for at least 23 of the preceding 24 hours, I have had almost nothing on my mind except autism and recovery. I’ve been giving pills, cooking special foods, corresponding with parents on-line, reading about the latest treatments, cleaning air purifiers, mixing clay baths, filtering water, completing HANDLE exercises and concocting RDI games, fighting for a special-education placement, juggling therapy appointments, navigating social-work bureaucracy, keeping Martin’s doctor up to date, and worrying about what vaccinations are doing to our children.

You can ask me how Martin is doing. I will respond, “We have our ups and downs,” maybe add one or two recent achievements, and then move on. Here are suggested topics I would probably rather discuss than Martin’s autism:

•            How are the Rangers play-off chances looking? Will Lundqvist win the Vezina a second time?

•            Why is it still winter at the end of April?

•            Is the new Jackie Robinson movie melodramatic? Does melodrama ruin a good story? Did it ruin Argo?

•            Who is going to be the next mayor of New York City?

•            WNYC reported that 70% of home sales in Brownstone Brooklyn are all-cash deals right now. Seriously, 70%?

•            Is it okay to put a cat on Prozac?

You get the idea. There are a million things to talk about that are not autism.

And if you really, really want to talk about autism, say you support us. Adrian’s mother once set the gold standard in that regard. Adrian was visiting his country of origin and staying in the family home. One evening he and his parents and siblings crowded around a computer to Skype with me and Martin back here in the States. As it happened, that day Martin was at his worst. He would not sit with me or look at the computer. He failed to respond to any questions, or even acknowledge his father and grandparents and aunts and uncle on the screen. After 30 seconds I gave up and released Martin, who jogged around the room, yelling gibberish.

It was a painful moment for me, and though he didn’t say anything, I could tell it was painful for Adrian, too.

Evidently, so could Adrian’s mother.

After we finished with Skype, Adrian went out to dinner with friends. When he returned to the family home that evening, everyone else was in bed. On the kitchen counter was a note from his mother. Loosely translated:

“Martin will get better. I believe in what you’re doing. Love from Mamá.”

Next to the note was a plate with a cookie.

That’s all we really want, any of us, right?

A little faith, and a cookie.

Wondering Where Recovery Lies

Posted on by findingmykid
2

Martin and I are at LaGuardia, on a flight delay. Fog. We’ve survived a hurricane ripping through New York and an unseasonable Nor’Easter dumping snow onto our neighbors’ powerless, unheated homes. Here at LaGuardia, however, it’s “patchy fog” that ruins the day.

I just spoke with the staff at Martin’s doctor’s office. That’s where we’re trying to fly—to his doctor’s office. We’re lucky; they’re going to rearrange some scheduling to accommodate our 90-minute delay. Let us hope it’s 90 minutes only.

I want to make it to the appointment, because medically speaking, Martin is not doing well. (Again.) Since our last appointment, eight weeks ago, he evened out, then looked good, then slipped. For the last three weeks he’s been plagued by a yeast imbalance. (Again.) Since beginning biomedical intervention almost two years ago, we’ve got yeast under control three times, only to have it strike back three times. Right now Martin’s skin is leathery and covered with scratches. He itches. He can’t resist clawing at his arms and legs. And with yeast come symptoms: distraction, irritability, toe-walking, skipping. I dread the pa-dap-BUMP sound that means Martin has lost attention, jumped into the air, and is about to start running laps. I hear pa-dap-BUMP a dozen times a day.

Still, outside the biomedical realm, Martin is making some progress. Last month he began Anat Baniel Method (ABM) therapy. Within a week we saw verbal progress: He started using the command form. He said, “Mommy, come play with me,” at the playground. I thought that might be a fluke, until he called, “Mommy, come here,” from the bathroom and then said, “Turn it off please,” when I ran the Vitamix during breakfast. Previously Martin could not use the command form; he either used an affirmation (“You’re going to come here”) or expressed a desire (“I want you to come here”). I was on cloud nine with the new verbal ability, until Martin barked, “Make me a snack!”

We’ve made some RDI progress, too. We’ve been working on pacing and facial referencing. Two days ago Martin asked for his drumsticks. I said, “I think I saw them on the chair.” Martin walked to a chair in our living room, didn’t see the drumsticks, then turned back to me, looking for more information. (Ding! Ding! Ding! RDI success!) I said, “No, one of those chairs,” and thrust my chin toward the sitting room. Martin got the idea but missed the exact location; instead of the sitting room, he headed for the dining table. (Our loft has an open floor plan. These areas all sort of merge.) Then he turned back to me again. (Ka-BOOM!) I said, “The chair over there with the doll on it,” and there he headed, to find his drumsticks.

So it’s a mixed bag, these days. Since we started biomedical intervention, I’ve lived with the assumption that the key to Martin’s recovery lies in healing the immune issues that underlie the disorder. These days, when the biomedical aspects are getting us nowhere—unless “Symptomatic Itchy-ville” counts as a place—but behavioral and physical therapies are showing some results, I question my assumption.

I’ll post again after today’s medical appointment.

If we make it.

Stuck at LaGuardia. Not much to do.