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.

Wondering Where Recovery Lies

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.