The Bigger Perspective

Martin’s school is a self-contained special-education setting for children with speech and language disorders, including autism. The teachers possess patience and experience in equal measure, the administration is supportive, and I feel fortunate that has been placed there since kindergarten.

Yesterday, when I arrived to pick Martin up for personal training, I ran into the mother of Brian, another boy in Martin’s class. I’ll call the mother Chrissy. This is the third year Brian and Martin have been in the same class, so I know Chrissy well enough. Chrissy was picking up Brian, and as usual, she had her younger son, Aaron, with her. Aaron attends a special-needs preschool in the City, and I know that the family has been looking for a kindergarten spot for him, so I asked how the process is going.

“Good,” Chrissy replied. “I think we are actually going to be able to get a spot for him here.”

“Here? That’s terrific,” I said. “Both boys in the same school—they’ll be able to see each other, act like brothers. You must be happy!”

“Yeah. I’m happy.”

Chrissy didn’t sound happy.

“Not a great thing?” I asked, tentatively.

“I mean—both my kids are going to be here.”

Ah, yes. Of course. Both her kids will be in the superior self-contained special-education setting for children with speech and language disorders, including autism.

Because both her kids have autism.

Because we are losing a generation of boys, and a lot of girls, no one is doing anything about the crisis.

Past Tense

Years ago, when we were only a few months into Martin’s recovery, I was leafing through a magazine I found in our doctor’s waiting room. I don’t remember the publication’s title, or even its purpose; I think it may have been a resource for parents pursuing biomed.

What I do remember were a couple of personal-experience pieces written by typically developing teenagers in support of their ASD siblings. In one, a girl whose brother was already recovered talked about her brother’s autism and how it had led her to advocating on behalf of students with disabilities. Although my memory of the other details is nebulous, I can still recall this phrase: “During the time my family was affected by autism . . . .”

Those words struck me. They were so comforting, how they suggested that there can be an other side to autism, a time when autism is not a daily struggle, when recovery is not the long road (to where?) ahead, but when the reality has become a memory.

I’ve written now and again about autism symptoms that are so far gone that they no longer exist in my daily consciousness.

Martin, for official/school purposes, has lost his autism diagnosis.

We still have work to do. Lots of work. Martin’s executing functioning—meh. As a corollary, Martin’s attention span and ability to plan—ugh. Martin still has a diagnosis. “ADHD,” our new territory.

Yet—.

Last week I attended a conference in California, for the consumer advocacy work I do. I was meeting with the director of a non-profit organization devoted to monitoring toxins in personal-care and household products. She asked how I became involved in representing consumers.

I said, “Through my son. He had autism.”

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’.”

Disappointment

I’d like to write a bit on the topic of disappointment, because disappointment is affecting me this week.

To be honest, disappointment is always affecting me, to some degree. When we started recovering Martin, more than five years ago(!), I thought we’d be done by kindergarten. The mother who launched our biomed journey put that notion into my head, I suppose, because she’d recovered her own son in less than three years. Martin is in second grade now, and if you read this blog, you know that he’s not recovered yet. That disappointments me, chronically.

The fact that the pace of Martin’s recovery disappointments me—that compounds the issue, because I feel disappointed in myself. Think about the son I have today: conversant, joking, getting-healthy, almost-non-stimming, diagnosed ADHD/language delay. Compare him with the constantly stimming, perseveration-stuck, limited-speech son I used to have, diagnosed ASD. What kind of person am I, to let disappointment enter my thoughts?

dis•ap•point

v.tr.

1. To fail to satisfy the hope, desire, or expectation of.

2. To frustrate or thwart.

v. intr.

                To cause disappointment.

We are hoping to transfer Martin from his self-contained special-education school to a general-education classroom with an aide. The neurodevelopmental psychiatrist (mainstream) says that Martin is ready. The behaviorist says that Martin could make the leap. Martin’s Sunday-school teacher, who has charge of him along with a dozen typically developing kids one morning per week (and who herself has a son fully recovered from autism), has advocated for general education. Adrian and I, when we see Martin at his best, know that he has outgrown his special-education placement and needs the challenge of general education.

Our zoned elementary school, at Martin’s grade level, has 26-to-28 pupils per class. Even with an aide, that’s too many. Instead, we’ve been combing the local private schools, which average 12-to-15 pupils per class. I’ve met with the admissions directors of more than half a dozen private schools, explaining that we want to transition our son, and that he would likely need assistance, including a classroom aide, for another year or two. One school told me to get lost: They had no provisions to help a child transition to general education, and were not interested in stretching their parameters. Several schools said they had a resource room and/or a special-education teacher on staff and could offer accommodations but would not consider a classroom aide. Two schools, both church-affiliated, said that if Martin was otherwise a good fit, they would consider allowing a classroom aide. One of those two schools currently has two students with classroom aides, and its headmaster is a former special-education teacher. That school soon became my, and Adrian’s, top choice for Martin. When the school agreed to have Martin visit for a day, last week, we were hopeful.

As I wrote above, when we see Martin at his best, Adrian and I know that he has outgrown his special-education placement and needs the challenge of general education. Regrettably, Martin is not always at his best, and for the past month or so, he’s been sensory-seeking, with a diminished attention span. (A limited attention span—an infinitesimal attention span—remains Martin’s greatest challenge. Diminish that? Argh. Martin? Martin? Hello, Martin?) When he visited our top-choice private school last week, Martin was not at his best.

The school promptly turned us down.

What a disappointment.

Disappointment, because although the other church-affiliated school remains in play, our plan to move Martin to general education may be delayed another year. Disappointment, because the school we thought would want our son rejected him. Disappointment, because biomedical recovery is still a fringe movement, so I cannot tell the school, “Two steps forward and one step back. It gets worse before it gets better. The antimicrobials he’s taking for Lyme disease have kicked up a lot. Wait a month or two. He will be a whole different kid.”

The sting of rejection is still fresh, and today Martin’s annual review arrived from his current school. If you have a child with an IEP, you know that annual reviews, and progress reports, and IEP’s themselves, are not drafted to highlight a child’s strengths. They are drafted to justify maintaining services. Martin’s annual review is no exception. He has trouble sitting in his chair properly. He sometimes calls out inappropriately during lessons. (Detoxing. Ever hear of detoxing?) He reacts poorly when he doesn’t earn all his behavior-management tokens. He can’t focus. He needs prompting. He is making progress, but he isn’t ready to leave his supportive setting.

When I was a child, my family had a Magnavox Odyssey2 video game console. (Showing my age with that admission.) I remember a game that scrambled words. I just searched online but found no record of this game. (If you, dear reader, happen to be an Odyssey2 whiz, or just skilled at finding ancient relics online, please email me at FindingMyKid@yahoo.com, or comment on this post, with some evidence that this word game existed.) I loved the Odyssey2 word game. I challenged myself to find words too long to fit on the screen.

I remember distinctly: The longest word my pre-teen mind could conjure was DISAPPOINTMENTS.

Fifteen letters, DISAPPOINTMENTS. Many months passed before I found a better word than DISAPPOINTMENTS.

Today, here, now, I challenge myself to find a better word than “disappointment.”

I challenge myself to find a better emotion than disappointment.

IMG_2084

Martin, next to a good friend of mine, checks out the Long Island Sound.