Attention-Deficit Hyperactivity Disorder (ADHD)

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’.”

Why, Hello Again

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.

Support. The Supportive Kind

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.

A Little Bit Here, a Little Bit There

Pretty good week, this last one. Pretty crap day, today. Martin unresponsive, lacking attention, and throwing tantrums instead of transitioning. Tired and not himself. Mildly ill, even. Yesterday he threw up in the car, a special surprise that may have been tied to his beginning to eat meat products. (Since we started with the beef broth Martin has, now and again, after meals, appeared nauseated.)

Still, even on this crap day, some skills shined. Martin’s language, when he chose to use it, was appropriate and expressive. Also, we went shopping around Union Square, and three times (that I remember) he intentionally caught the eye of a salesperson and said, “Hi!”

I think in those terms, now. What worked today? What didn’t? I scrawl my observations into the daily log I keep for Martin.

I’ve tried to apply the same thinking to Martin’s recovery, on a meta-level. Which treatment or therapy is working? Which is not as helpful? Those, however, are much tougher questions.

The truth is, I see Martin making progress (two steps forward, one step back, usually), but it can be tough to discern the individual catalyst of progress like saying hi or trying to catch a stranger’s eye. Most likely, I suppose, every such advance results from some combination of the treatments we undertake.

As I have described previously, we see Track One doctors, who as far as I can tell have evaluated Martin but done nothing to help him. Apart from Track One doctors, this is Team Martin:

Track Two doctor. Martin’s excellent Track Two physician is riding the edge of autism recovery. I like to call her “post-DAN!” because she is so on top of treatments beyond the standard DAN! protocol. She oversees every facet of Martin’s biomedical recovery.

Home consultant. I’m new to this world of autism recovery. Questions come up on a day-to-day basis. Kathleen Reily answers them. She also helps me, for example, plan Martin’s diet, find local practitioners, and research kitchen products (water filter, lead-free glass, cutting boards not treated chemically, &c.). If I’m the coach of Team Martin, Kathleen is the manager.

Homotoxicologist. A big part of recovery lies in driving toxins and pathogens from the body. Martin’s homotoxicologist, Mary Coyle, works that angle, in coordination with his Track Two doctor.

Cranio-sacral therapist. I drive Martin all the way to Pleasantville, in Westchester, to see Diane Diamond. She helps figure out what’s not functioning well in Martin’s body and makes appropriate adjustments. She once told me, based solely on putting her hands on Martin, “I’m sensing some bile blockage. He’s not processing all this fat in his diet.” A week later, a urinalysis confirmed her assessment medically.

HANDLE therapist. We visit Katie Penque every four-to-six weeks. She observes Martin, interviews me and Adrian, evaluates how Martin’s current HANDLE exercises are working, and suggests and helps us learn new exercises. Katie and Martin’s Track Two doctor are also the proponents-in-chief for the “less is more” approach to recovery.

RDI consultant. RDI incorporates a variety of games and routines, but really it is a therapy that becomes part of daily life. Allison Zevallos helps us make that happen. She makes a home visit every month or so. In between those visits, Adrian emails her videos of Martin in action, which she reviews for a weekly phone consultation with both of us.

CPSE preschool. Martin attends a top-notch preschool for children with learning delays and developmental disabilities. Adrian and I are profoundly grateful for this service, which is provided through the Department of Education’s Committee on Special Preschool Education. Martin spends more than five hours per weekday at his CPSE school.

Speech therapist. Martin’s preschool provides him a bilingual speech therapist, in accordance with his individualized education plan, or IEP. She works to unlock language skills like pronoun use and asking questions, which Martin’s ASD has hidden.

Physical therapist and occupational therapist. Martin also sees these two professionals at his preschool. Together they assist him with gross and fine motor skills, practical life lessons like watching where he’s walking and being aware of the world around him, and performing everyday tasks.

So what among all this is facilitating Martin’s progress? Adrian and I credit HANDLE therapy for helping Martin develop better control over his body and lose some of the jerkiness that characterized his earlier movement. His physical therapy likely augments HANDLE in that regard. We credit RDI with helping Martin (this is an emerging skill, coming about slowly) learn to read faces and expressions and to better pace himself with others, so that he can undertake activities like holding my hand as we walk together. His occupational therapy likely augments RDI in that regard. It’s all puzzle pieces, coming together.

I consider the biomedical process—the restricted diet, the supplements, the detoxification—to be the sticky backing that holds those puzzle pieces in place. It was the biomedical process that got Martin sleeping and rested, eased his gut pain, and reduced the lethargy that used to characterize his days. Without that foundation, the pieces would probably still jiggle around, unable to interlock fully. Without the stronger body biomedical recovery is giving us, the therapies could have less effect.

A little bit here, a little bit there. I don’t want to spend too much time figuring out what progress comes from where, so long as we’re moving in the right direction.

The Most Beautiful Words, Ever

Yesterday evening I was doing a new HANDLE exercise with Martin called “Airplane Flagger.” Martin lay on his back on the floor, and I manipulated his arms: from his chest outward, from flat at his sides to over his head. At some point Martin mistook Airplane Flagger for “prelude to tickles,” which is not a HANDLE exercise but a fun game when I pin his hands above his head in order to tickle his underarms.

I figured, What the hay. Let’s make it tickle time, and set to tickling. I just love the joy of his unadulterated little-boy laughter.

A few seconds later I released his arms and let him catch his breath. I waited, poised above him, fingers pressed together in tickle-threat formation, holding Martin’s expectant gaze as RDI suggests. Martin could hardly contain his anticipation. “Again,” he said between gasps. “Again.”

So steady was Martin’s eye contact, I had to draw the moment out. I leaned closer and asked, “What? Whaaaaaat?”

And he produced the most beautiful words, ever.

He focused his eyes on my face, deliberately. He paused and considered. Finally, he said without bewilderment or guess, with the self-assurance of an accomplished orator:

“I want you to do that again.”

The sentence nearly overcame me. Instantly I analyzed it. An original thought, not heard and repeated. Subject. Object. Infinitive phrase. Adverb modifier. Perfection.

Martin’s previous best sentence, to my knowledge, came six or seven weeks ago, before he tumbled into the distraction that characterized last month. Dinner had just concluded. Adrian gathered Martin and announced bedtime. Martin became mildly distressed and protested, “I want to do sleepytime with Mommy.” That was a good, solid sentence—also included an infinitive phrase, and threw in a preposition—but “I want you to do that again” exceeds it in complexity, and requires proper use of both “I” and “you.” Prepositions are sand traps for an echolalic boy; he repeats what we call him (“you”), instead of registering the interconnectedness (the speaker is “I”). Perhaps we are approaching a milestone in his understanding.

Once my shock faded, as you can well imagine, I acceded to his wish and tickled. Again.

My son is a miracle.

As of September 28, a Weekday. And Some Sunshine

On August 5 I posted about my typical weekday. One reader sent this comment, via email:

You are not only an afternoon sous-chef/lawyer, but you have incredible perseverance (re utilizing every minute of the day) and patience. Somehow you maintain confidence it will be okay in the long haul. I got tired just reading it, especially the activities even after Martin went to bed. Someday it will all be all right.

That sounds sad to me. Does it sound sad to you? As if I’m so overwhelmed that I survive only by clinging to confidence in a better future for Martin?

Okay. Fair point—sometimes I am so overwhelmed that I survive only by clinging to confidence in a better future for Martin. It happens.

But I’m determined to stop being such a downer on the blog. If you are a reader acquainted with me off-line, you know that, in person, I am not a walking bummer. To the contrary, I’m quite sunny. (Adrian, the only party besides Martin with 24-hour access to me, might disagree. Fortunately for me, I’ve not yet added a “Husband’s Page” to the blog.) The reason I’m quite sunny is that I have a stable family and a blessed life. What concerns me most is how close my son will come to neurotypicality, and whether we can cover the distance quickly enough to overcome a late start to social interaction. That concern weighs heavily, but it’s not poverty, or terminal illness, or homelessness, or hunger, or unemployment, or abuse. Mine is a concern that, overall, I feel I have the tools to conquer.

Today I am posting optimism and contentment. Martin’s attention is returning, after that bad month we had. Yesterday I phone-conferenced with Martin’s excellent Track Two doctor, who ran some tests regarding his adrenal stress and is preparing appropriate homeopathic relief. Although the “meat thing” has proved difficult for me, Martin seems to be taking to beef broth without issue. Two evenings ago I enjoyed myself thoroughly at a happy hour for parents from Martin’s new special-education preschool.

Furthermore, since Martin started his new school earlier in September, my days have improved, time-wise. A typical weekday now looks like this:

6:40-7:00 a.m. I rise. I feed the cats. I check email and respond to any urgent missives. I prepare Martin’s morning homotoxicology and other drops, which “cook” ten minutes in hot water, to burn off the alcohol in which the active ingredients are suspended. I start Martin’s breakfast, which these days alternates among duck egg with squash fries (weekend treat), muffins with Dr. Cow “cream cheese,” grain-free veggie pancakes, and the occasional bowl of buckwheat or quinoa cereal with nuts. My mother just sent a waffle maker and recipe for almond waffles, so I’m going to add those into the rotation.

7:00-8:10 a.m. Busy time. Adrian won the desirable job of waking Martin (he’s like a sleepy little bunny rabbit in the morning) and the less desirable job of getting Martin onto the potty and then dressed. While they are thus occupied, I finish making Martin’s breakfast. I’m also running up and down the stairs from kitchen to bedrooms, bringing some supplements and maybe doing a HANDLE exercise or two. Adrian brings Martin downstairs by 7:30. I help Martin with breakfast and remaining supplements and oils, while Adrian showers and gets ready for work. I also fix Martin’s lunch during this time, because I like it to be as fresh as possible. His typical school lunch comprises nut butter slathered on homemade crackers (which get soggy if I prepare them the night before), accompanied by a dish like sauerkraut, avocado, pear, or hard-boiled quail eggs. By 8:00 Martin is teeth-brushed and ready. He makes one final visit to the potty with Adrian. At 8:10 precisely they walk out the door together, Adrian wearing a laptop/document backpack and Martin wearing a zebra backpack stocked with school supplies, lunch, and toddler training pants. Adrian puts Martin on the school bus.

8:10-9:00 a.m. Kitchen and me time. I empty the dishwasher, load in any plates lying around, give the kitchen a once-over, and if necessary do basic prep work for dinner. Then I get myself washed and dressed, and walk to the corner coffee shop for a soy latté.

9:00 a.m.-3:15 p.m. Lawyer time. I spend as much of this time working (as a lawyer, my “real job”) as possible. I may also sneak out to the natural foods store or continue dinner prep. Occasionally, daringly, I start a blog post. Samara picks Martin up at school at 2:15. They dawdle, wander here and there, take the subway home, usually arriving around 3:15.

3:15-6:15 p.m. Flex time. I keep doing lawyer work, as necessary. I assist Samara with Martin’s afternoon and evening supplements. I finish preparing dinner. I do HANDLE exercises with Martin. Some days Samara takes Martin to the park or a play date. By the time Samara leaves at 6:15, she has Martin bathed, pajama-clad, and halfway through his dinner.

6:15-7:00 p.m. Sleepy time. Martin keeps a 6:30 bedtime these days. That’s when we head upstairs to read a book, brush teeth, and snuggle. While Martin dozes off I sit in the rocker and check Facebook, read, or play Scrabble on the iPad. Adrian, when he’s home for bedtime, doesn’t hang around while Martin goes to sleep. I can’t leave. I cherish seeing Martin off to rest at day’s end.

7:00-10:00 p.m. More flex time. Some days I need to head back to my desk for more lawyer work. Some days there is laundry accumulated, or a pressing household task. Always there is kitchen work, for Martin’s special diet or for Adrian’s snack when he comes home between 8:00 and 10:00 p.m. My favorite evenings are when Adrian comes early, and I go for a walk or out to meet a friend.

10:00 pm.-? Bedtime and blogging. Sometime after 10:00 I head upstairs to read, talk through the day with Adrian, and blog.

I can manage this schedule, much better than the chaos before Martin began full school days. In fact, Samara now takes one day off per week. I cut work at 1:30 then and pick Martin up at school myself, and the two of us hang out for a couple hours.

Here’s what I still cannot figure out, though: Despite this new schedule, help from my mother on Martin’s food, and what should be more time for me, still I rarely put away the computer or iPad before 1:00 a.m. Honestly, I can’t even tell you what I’m doing all that time. Playing Scrabble, emailing, writing, reading, who knows? My next project—lights out by 11:00 p.m.

Saturday. Doctor, Therapist, Farm

Until August, Martin attended school just for two hours per weekday. His new school runs more than five hours per weekday, with a decent commute on either end, to boot. Participating in CPSE also carries family responsibilities. We can’t willy-nilly yank Martin out of school, or decide that he’ll skip a day.

As a result, we now concentrate doctor visits and private therapies, when possible, on the weekends. We try to make family fun out of shuttling from one appointment to the next.

Today Martin woke around 7:45 a.m. (an extra 45 minutes’ sleep from school days). He and Adrian completed some RDI exercises while I assembled their weekend breakfast. Martin got squash “French fries” with kelp flakes and one duck egg fried in hemp oil with minced cilantro. Adrian got the same, but substituting a chicken egg and adding a slice of whole-wheat toast.

It was a lazy morning, and despite the early start we managed to leave late for our 10:30 a.m. meeting with Dr. Ingels, the allergist, near Union Square. Because we were setting out for the day, we took the car, which of course made us even later, our route blocked by firemen using their truck and ladder to remove their stationhouse’s window-unit air conditioners, and then by a moving crew marching across 23rd Street with mattresses. A bunch of mattresses. Dr. Ingels pardoned the untimely arrival, and we enjoyed a routine visit. Martin’s tolerance for malverine, piperine, and candida has increased.

From Dr. Ingels’s we headed north, to Pleasantville, for a 12:30 p.m. session with Martin’s HANDLE therapist, Katie. She is the chief proponent of accomplishing Martin’s recovery as gently as possible. We discussed ways to soften the process even more. I talked about Martin’s attention and language lagging this past month. Katie asked about Martin’s sleeping and body control, which actually (I realized) have during the same period been quite good. Attention and language are advanced functions, she reminded me. Sleep and control are building blocks.

We grabbed lunch at the Pony Express in Pleasantville and ate in the plaza by the train station. Martin had rice crackers and homemade white-bean hummus. He investigated some trees, ran to the fence to watch a train pass below, peered with interest at (but did not speak to) another little boy. Overall, he seemed better. I’m beginning so sense a return of his attention, since we reduced the Biosode from 1x dilution to 2x.

From there we moved on, even further north, to the highlight of the day (for Martin, and perhaps Adrian) and an onerous task (for me). We drove to Hemlock Hill Farm in Cortlandt. We had researched farms on the internet in search of one that was organic and came close to meeting my ethical standards. We need some meat.

Yes. Meat. We’ve decided to feed Martin limited amounts of meet, and see if it augments his recovery. The choice has been weighing heavily on me these two weeks or so, and I needed to have it over with.

So off we went to Hemlock Hill Farm. Adrian took Martin to wander among the chickens and geese. I entered the little shop the farm maintains, more or less a concrete room with refrigerated glass display counter, freezer, shelving unit, and a few display bins. A man behind the counter asked if he could help me.

“I need—some meat.”

“What kind of meat?”

I decided honesty would be the best approach and ’fessed up that I had no idea what kind of meat. I’m a vegetarian, I explained. My son has a medical condition, and I’m going to try preparing him some meat.

The fellow was friendly and patient. He showed me packaged goat parts and which beef cuts have bone in them. (I’m supposed to put bone in the crockpot for making broth.) He explained how I could differentiate meat of animals killed on-site from that of animals killed at a USDA-certified facility in Pennsylvania. (I didn’t want any flesh from animals who were transported before slaughter. Too cruel.) I read information on what the animals eat—primarily, grass and grain also produced in Westchester County, at another farm. I asked about quail eggs. The farm has had them in the past but did not have any now.

Finally I purchased two frozen shank cuts, bone in. Cow meat. I took a dozen duck eggs, too, saving myself a trip to the farmer’s market.

Then I went out to greet the animals. The ones still alive, anyway. The birds seemed happy and unafraid. Other than wire fences delineating the fields—ducks over there, chicken and geese this way—they have freedom to move about as they please and peck at the ground. The recent rains had left the area muddy, but I could imagine some serious dust bathing when our prodigal sun reemerges. The cows were grazing in a pasture some distance up the road, so I declined the farmer’s invitation to go meet them. She also invited me to hang around until the cows came home from pasture around 5:30 p.m. The day had already stretched long, however, and we needed to be getting back to the City.

Martin knocked off early this evening, exhausted from new HANDLE exercises and playing amongst the fowl.

My mind remains fixated on the cow meat now in my freezer. Tomorrow evening I will try to make a beef broth. I hope that I don’t fail and waste the flesh.

This new chapter will be complicated.

HANDLE this!

Martin has been a little off this week. Not in the same way as last week—his attention span is back up (thank goodness). Instead, he lacks coordination and balance, he’s restless at bedtime, and he’s had a couple difficult nights. (We used to have terrible troubles with Martin’s sleeping, which were misdiagnosed by the experts at the Big Imposing Hospital as Restless Leg Syndrome, or RLS; Martin’s sleeping was more or less the first thing that improved when we started treating his autism biomedically.) I attribute this week’s symptoms to the fact that, on Monday, we visited his HANDLE therapist, Katie Penque.

Of the various therapies in which Martin participates—RDI, PT, OT, speech therapy—HANDLE therapy has proved to be surprisingly powerful. Counter-intuitively so, even, as it relies on simple and gentle “organized movement activities,” like tilting Martin slowly backward and forward, or tapping my fingers across his skull in a particular pattern. The therapy is designed to help Martin gain better control over his physical self, his movements, his actions.

We noticed immediately after we began HANDLE therapy, three months ago, that Martin had a series of restless nights and seemed a little discombobulated during the day. Katie advised us to reduce the HANDLE exercises, then work back to full capacity. We did so. Even so, I sometimes have to skip a particular exercise because Martin seems to resist it. (In HANDLE language, this is called a “state change.”) But more or less, we got the hang of it and proceeded accordingly.

Now we see restless nights after a visit like Monday, when Katie evaluates his progress and recommends new, more advanced exercises. This week we added “hoop elevator,” in which Martin stands still whilst I slowly lower a hoop around him, from his head to the floor and back up again. We also added “joint tapping,” which is about what it sounds like, i.e., me tapping Martin in a bouncy motion at various joints. Doesn’t seem like much, right? But even Katie doing the exercises with him on Monday, to show me how, set Martin on a course of nighttime restlessness and diminished coordination. It was Thursday before I could complete any HANDLE exercises at home without him resisting.

As Adrian and I see it, the HANDLE therapy is as successful with Martin as it is occasionally overwhelming. Martin truly is more in control of himself. He remains still for longer, and many of his movements have lost the clumsy jerkiness sometimes associated with ASD. The improvements are evident even when he sleeps. Martin used to circulate the bed during the night. Head at the top of the bed. Head at the foot of the bed. Head hanging off the side of the bed. Feet up the wall. Blankets on the floor. He continues to toss and turn, like any toddler, but for the most part he has become able to keep his head on the pillow, and a light blanket approximately over his body, from sleepy-time till morning.

It’s Friday night, and he has evened out since Monday. This weekend I will introduce the more advanced HANDLE exercises and see where they take us. I enjoy that Martin no longer attracts curious glimpses from passers-by, who look as if they can’t put their finger on why he appears different from other kids. Day by day, he looks more and more like the others at the playground.