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.
“You sure you don’t want to try melatonin again?” asked Martin’s doctor, the one supervising the medical side of his recovery.
“No!” I responded. “No, definitely no. That’s one thing we’ve achieved recently. I don’t want to go backwards.”
The days before Martin’s autism diagnosis were dark times: Martin’s neuro-challenges left him so restless, so lost in spatiality, that he could not fall asleep unless physically restrained. Some nights it sufficed to sit next to the bed and hold his ankles to the mattress, so he couldn’t kick. Some nights we had to kneel over him to straddle his body, too. The worst nights, we had to find a way to still his legs, his torso, and his arms—only to watch his head thrash from side to side. No matter what we did, he needed more than an hour to fall asleep. Sometimes two hours. Or three. Even then, we couldn’t let go, or he’d wake.
Martin’s pediatrician, at a loss as sleepless nights became sleepless months, referred us to the chairperson of the department of pediatric sleep disorders at a prestigious university hospital. That “expert” told us to make “picture charts” to help Martin understand what bedtime meant. She also diagnosed “restless leg syndrome” and told us to put Martin on iron supplements, which stained his teeth purple. It was a garish era for photographs of Martin.
Meanwhile, Adrian and I slept in three-hour shifts, one of us trying to rest while the other pinned Martin.
We received Martin’s autism diagnosis in autumn 2010. Once we learned what was really causing his inability to sleep, we purchased a weighted blanket. That did not help, and later was donated to a special-education preschool classmate. Martin’s sleep situation did not change until we started biomed in February 2011. The difference, as far as I can tell, came through (1) restricting Martin’s diet, and (2) melatonin. Melatonin is a hormone that the body produces naturally for sleep regulation, and it can also be made synthetically in a laboratory. The NIH states, “Taking melatonin by mouth is helpful for disturbed sleep-wake cycles in children and adolescents with intellectual disabilities, autism, and other central nervous system disorders.”
On 31 August 2011, six months into the biomed journey, I posted this:
Almost as soon as we eliminated carbs (and sugar, and starch, and most everything else delectable) from Martin’s diet and added supplements, he began to sleep. As of late March, just for or five weeks into his recovery, Martin was falling asleep in 45 minutes or less and sleeping eleven-to-twelve hours through the night, five or six days a week. We still dealt with night waking one or two days a week, but the compulsive pitching about the bed ceased. Instead, Martin either lay still and chatted to himself or else laughed and acted drunk from his body detoxing.
As of today we more or less count on Martin sleeping through the night. If you’ve been reading this blog regularly, you know that we still have bad nights, and that we sometimes have two or three bad nights in succession, almost always related to Martin lumbering through a detox phase. But by and large, he falls asleep, and he stays asleep.
Until this past October, the sleeping situation, with some variations, remained that way: Martin fell asleep easily, and could be expected to sleep through the night, and when he happened to wake up wouldn’t go down again for three-to-five hours.
Martin takes some prescriptions (among them right now are levocarnatine and compounded piracetem), along with a lot of homeopathic drops and OTC supplements. Whenever possible, I try to eliminate from his daily regimen. So a few months ago, when Martin was on an upswing, I decided to try phasing out melatonin. We’ve made so much progress, I reasoned. Why not investigate whether we’ve resolved some of the issues that made sleep so difficult?
At the time (October), Martin was taking seven drops melatonin before bed. I eliminated one drop every one-to-two weeks. I’d reduce the dose by one drop, endure a few days of Martin taking a hours to fall asleep, wait until he adjusted and fell asleep within 30 minutes, and then reduce by one more drop. By Christmas, I had Martin off melatonin.
Things weren’t perfect. He was taking longer to fall asleep than he had with the melatonin—45 or 60 minutes, instead of 30 or less. But I discovered an unexpected benefit: When Martin woke during the night, he did not stay awake. He fidgeted and called out for me and sought reassurance, and then promptly fell back to sleep. I realized that Martin had been dependent on melatonin to get to sleep. Its absence, at 2:00 or 3:00 am, had prevented him from returning to sleep.
With Martin off melatonin, and capable of getting back to sleep, I’ve been able to attempt something new: nighttime potty training. Until now Adrian and I always left nighttime potty training on a back burner, reasoning that getting up to use the toilet was not worth the hours of wakefulness that would ensue. With that threat gone, we’ve been potty training since the week after Christmas.
As my posts these past few weeks have described, Martin’s been having a tough time. Among other issues, he’s been experiencing evening hyperactivity, and therefore taking hours to fall asleep. That’s why his doctor asked if we’d like to add melatonin again.
The doctor seemed surprised when, in response, I nearly barked my “No!”
Here’s the thing: Melatonin is a crutch. It got us past the long nights while we worked on remedying the underlying causes of Martin’s sleeplessness. Martin no longer needs that crutch. I would rather find and eliminate the cause of the nighttime hyperactivity than use melatonin to mask the hyperactivity’s effects.
The current melatonin situation reflects my overall approach to Martin’s autism. Of course I’m familiar with methylphenidate, amphetamine salts, guanfacine, and so forth—drugs that might improve Martin’s still-abysmal attention span. Maybe one day we’ll turn to such resources (in the end, I remain a pragmatist). But for now, while we have the time and opportunity, I choose to work toward eliminating the cause of his short attention span, instead of using drugs to mask the symptoms.
Readers, we’ve known each other a long time now, even if ours is kind of a one-sided relationship. I’ve decided we’ve reached that point where I can shorten “biomedical intervention[s]” to just “biomed.” If you’re new here, or have questions, or detest when people say just “biomed,” then leave a comment, or email FindingMyKid@yahoo.com. Regards!
“Martin, why don’t you go get yourself dressed like a big boy? Want to pick out your own clothes and get dressed?” I asked at nine o’clock yesterday morning. We had all slept late, and Martin was running around the house in jungle-print pajamas.
I didn’t believe that he’d actually get himself dressed. Six months ago, I laid pajamas out on his bed and spent 20 minutes trying to get him to take off his clothes and put on the pajamas. I went away to let him concentrate, returned every two minutes to beg or threaten or cajole, even lost patience (not my finest parenting). Martin continually forgot his task. He rambled about nothing, jumped on the bed, played with Curious George. I absolutely could not get him to focus enough even to remove his clothes.
Not too much has changed since then, except that for the last two weeks Martin has responded to every suggestion, however benign, with a resolute “No!”
Nevertheless, this morning I mentioned getting dressed only once before Martin said, “Okay!” and scampered down the hall to his room.
I went to the kitchen, where Adrian was eating breakfast. “I told him to get dressed,” I said. “I’m not hopeful.”
Barely a minute had passed before I heard Martin running down the hall from the bedrooms, yelling, “Mommy! Mommmmm-meeee!”
I found him standing in the living room, buck naked except for the blue socks he’d worn to bed. He looked straight at me (score!) and asked, “Mommy, am I still five years old?”
“Yes, you’re still five years old. Now don’t forget to change your socks.”
Martin ran back to his bedroom.
I returned to the kitchen. From afar, I heard a familiar sound. Martin’s bedroom dresser has thick metal handles attached to the drawers with leather loops, and when the handles are dropped, they clunk against the wood. The dresser is the last piece of a heavy German bedroom set that my older brothers once shared. As a kid, from my bed at night, I would hear that clunk and know Rudy and Eddie were getting ready to sleep. Now the sound ties Martin to his uncles.
“He opened the dresser,” I reported to Adrian. “I think he’s getting out clothes.”
After another minute Martin came running down the hall again. I met him in the living room. He was wearing clothes.
“You got dressed!” I exclaimed. “You got dressed! Good work! Go show your daddy!”
Martin went to the kitchen through the family room. I went through the dining room and got there first, which gave me a second to throw my fists in the air, jump up and down, and whisper to Adrian, “First time. First time dressed by himself without a reminder.”
Martin arrived. As Adrian picked him up for a hug, I surveyed Martin’s choices. Navy blue sweatpants with CHICAGO printed on one leg. A white sweatshirt with blue stripes. Adrian set Martin down, then snapped the sweatpants waistband to make a confirmation. “You’ve got underwear,” he said.
“Oh dear,” I added. “Martin, you’re doing so well. But you did forget to change the socks. Go change your socks?”
Back down the hall went Martin.
“Am I pushing my luck?” I asked Adrian.
Moments later Martin sauntered back into the kitchen and said, “Actually,”—that’s a favored word right now, the snarky actually—“I’ve decided to wear my sandals today.”
On his feet were Velcro beach sandals, without socks.
It was 34 degrees out.
“Sure, Martin,” I said, content. “Why don’t you wear those sandals until it’s time for church, and then you can put socks and shoes on at the same time.”
I was happy. Adrian was happy. Martin was happy.
Autism, of course, has its ways of changing any day. At church, after the service but still in the sanctuary, I told Martin that he had enough time to run around in the gymnasium but would have to eat his snack in the car. (We had to get to an Anat Baniel Method therapy appointment.) Martin responded by screaming, repeatedly, interrupting the postlude and eliciting annoyance from fellow parishioners. I picked him up and carried him outside. A complete meltdown ensued.
Last night Adrian tucked Martin into bed at 8:00 pm. Martin, who has recently discovered the joy of exiting his bed and running to the living room, went to sleep at 10:45 pm. Unlike Adrian, I cannot fall asleep while Martin is up and chatting. I got to bed after 11:00 pm and was one unhappy camper when 5:00 am rolled around.
Fortunately, as I may have mentioned, yesterday Martin dressed himself without prompts.
Which reinforces this truth: With every new morning comes fresh hope.
Martin plays this weekend in Bedford-Stuyvesant, Brooklyn. I told him he was too big for these baby swings. He responded by putting his “little brother Curious George” in for a ride.
Last year Adrian read Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, a book about children who are profoundly “different” from their parents. Solomon profiles families affected by mental illness, Down syndrome, deafness, dwarfism, gender identity, autism, along with parents whose children were conceived in rape or grew up to commit mass murder.
Andrew Solomon also has an article titled “The Reckoning” in this week’s New Yorker, based on interviews he conducted with Peter Lanza, the estranged father of Adam Lanza.
Adam Lanza was the 20-year-old man who, on 14 December 2012, killed his mother, then 20 young children and six teachers at Sandy Hook Elementary School in Newtown, Connecticut, and then himself. I blogged here about the fact that Adam was diagnosed with Asperger’s Syndrome.
On NPR’s Fresh Air program this week, host Terry Gross interviewed Andrew Solomon about “The Reckoning.” Solomon made a point that also appears in the article, a point about diagnosis: According to Peter Lanza, receiving a diagnosis—Asperger’s Syndrome, now regarded as high-functioning autism—enabled him and his ex-wife, Nancy (Adam’s mother), to ignore signs of more troubling developments in their son. As Adam became isolated, and prone to obsessive-compulsive behaviors, and fascinated with violence, including violence against children, his parents attributed the oddities to Asperger’s. Adam has Asperger’s Syndrome, they thought. Asperger’s makes him behave strangely.
I didn’t think, in the weeks after 14 December 2012, and I don’t think now, that Adam Lanza’s parents were culpable in what happened at Sandy Hook. That’s a ridiculous notion. They talked. They tried. They sought the advice of specialists. Nancy Lanza appeared to believe, genuinely, that coddling Adam and his increasingly disturbing whims was the best means of supporting her son. The burden we place on parents today is too great even without attributing to them their children’s reprehensible violence.
Without in any way blaming Peter or Nancy Lanza, I appreciate Peter Lanza’s recognition (and Andrew Solomon’s explanation) that a diagnosis is broad and easy to hide behind.
To that substantive point, I will add one more: A diagnosis of autism, while it may be comforting, is largely meaningless.
Martin does not “have autism.” Martin has a variety of conditions, linked by autoimmune disorder, that result in symptoms labeled as autism.
It is minimally probative when doctors label symptoms as disease. Suppose that a man goes to the doctor and is diagnosed with “wheezing.” Suppose that the doctor tells this man that many helpful therapies exist to alleviate wheezing, including throat lozenges, tea with honey, breathing exercises, and even CPAP masks. Suppose the doctor suggests that the man eliminate smoking from his routine, because smoking is known to exacerbate wheezing. Suppose the doctor goes so far as to prescribe a drug that relaxes the airwaves, so that the man can walk about with his wheezing less evident.
Would you think the doctor had been thorough? That he had done his job?
Or would you fault the doctor for addressing the symptoms but failing to diagnose lung cancer, the disease that caused the wheezing?
When Martin was diagnosed with PDD-NOS, and then with autism, I cried. A lot. Even Adrian cried. Autism is treated like a death sentence. Parents are coached to grieve for the child who once was but will not be again.
I wonder now what the days surrounding Martin’s diagnosis would have been like if the team of “experts” we paid had said something like this:
Your son has a complicated autoimmune disorder. His gut, where most of the immune system subsists, doesn’t have the right balance of beneficial flora, and therefore he can’t digest nutrients properly or respond to intruders like parasites, harmful germs, unchecked proprionic acid. On a related note, your son has a mitochondrial processing disorder, which is causing low muscle tone and lethargy. Several genetic abnormalities are contributing to the injuries. The totality of these disorders is resulting in systemic inflammation as a subpar immune response, and that inflammation, which persists even in the brain, is causing “misfires” within the neural synapses. These misfires result in the symptoms you’re witnessing: repetitive behaviors, lack of eye contact, social awkwardness, inattention, drifting, and speech skills that lag behind your son’s cognitive ability.
I imagine that, if three years ago we had been told all that, we would have cried less and got to work sooner. We would have asked questions like how to re-balance the gut flora, how to resolve the mitochondrial processing failures, and whether the genetic abnormalities can be addressed.
(We might also have asked how this autoimmune disorder arose, and whether it had anything to do with the hospital threatening us, placing our healthy son in the NICU, and pumping him full of antibiotics, after the unplanned C-section robbed him of the protective effects of his mother’s vaginal microbes. That’s a topic for another post.)
I won’t deny that I take comfort in the existence of an “autism community.” (Solomon makes the point that Adam Lanza rejected his Asperger’s diagnosis, and refused to consider himself part of the Asperger’s community.) I do, however, argue that the autism diagnosis is an impediment to recovery. “Autism” sounds impossibly untreatable. The health conditions underlying autism? Not so untreatable. Those we can roll up our sleeves and tackle.
Andrew Solomon, who is public about his own battle with depression, lamented in the Fresh Air interview that Adam Lanza’s depression might have been treatable, had it been recognized as depression instead of hidden within Asperger’s. I ask: Would the depression have been hidden if Adam’s parents had realized that Asperger’s Syndrome is a symptom of an underlying condition? Or might they have suspected that the depression arose, in whatever measure, from the same underlying condition? Might they have had the tools to roll up their sleeves with more success?
Adrian reports that he found Far From the Tree (emotionally) difficult. He put it down for a while after reading that courts tend to issue mild sentences for parents who kill their special-needs children. Some forms of filicide, it appears, are considered forgivable. Would the filicide be so forgivable if those parents had children with diabetes or leukemia or renal failure or any other condition that, with medical and dietary and lifestyle attention, might be kept at bay?
Autism is the symptoms of a treatable medical problem. Diagnosis matters.
Feel-good stories fly around social media like air hockey pucks around the table. They go viral: click click click click clack clack click click clack kajing! Goal! All over the internet!
A disproportionate number of these feel-goodies, it seems to me, involve ASD, usually children with ASD. The waitress who brought a new hamburger when an autistic girl thought hers was broken. The garbage man who rewarded an autistic boy obsessed with watching the truck collect dumpsters. The young autistic adult who relates to the world through Disney movies. And so on. You’ve seen them, I’m sure.
A partner to the feel-good stories are the empowering badges, which often appear as Facebook statuses. “This is national autism awareness week. Post this for an hour so that everyone knows autism exists.” “I pledge never to bully anyone with autism. If I don’t see this as your status, I’ll assume you don’t care about bullying or autism.” (I’m exaggerating for effect, but not exaggerating that much.)
I have nothing against feel-goodies or empowerment. On the other hand, when these tidbits are shared by persons outside the ASD community, I feel patronized. Most adults have no inkling what it’s like to live with a person with autism, and cannot fathom how it feels to be responsible for the future of a person with autism. From their hideaways in neurotypicality, they have our token children to help them shed a few tears of gratitude. It’s a catharsis.
I would like to say, please, get your catharsis from fiction. Try Shakespeare, or a melodramatic movie. Or read history, long-ago victories and defeats.
Autism isn’t fiction. It isn’t feel-good. It’s our reality, a reality that’s spreading every day. If you want to feel good about an autistic child, forget the heartwarming videos and articles. Start advocating. Start questioning why autism rates are rocketing skyward and we’re not doing anything to stop the epidemic. Remember that the reason you smile at those feel-good stories is that you don’t have to deal with the non-feel-good moments that fill the rest of the time.
Thanks.
In Wednesday’s post I included a reference to the “subtle naysayers.” Those are the people who say they support our journey but who often lob jabs or zingers that suggest otherwise. I gave seven examples of statements (e.g., “Is that actually a scientifically accepted principle?”) that, to me at least, translate as, “I think it’s wonderful that you want to help your son, so I’m going to say that I’m rooting for you! Deep down, though, I don’t really think your process of diet, supplementation, and other interventions can recover your son.”
In case yesterday’s post didn’t make the point, here are some other examples of subtle naysaying: “Of course, you need to leave room for Martin just to be a kid. Balance is key. Don’t go overboard.” “I bet there isn’t another mom doing as much as you do!” “Isn’t chelation dangerous?” “I was reading about a family that stopped all supplementation. Their son did even better without it.” “It’s just so hard to believe that mainstream doctors don’t know about this.” “Can you take a break from the diet over vacation?”
And then there’s my, ahem!, favorite: “It’s so great, what you’re trying to do.” What’s wrong with that statement? The word “trying,” which implies lack of success. True champions say, “It’s so great, what you’re doing,” or, “It’s so great to watch Martin’s progress.” Subtle naysayers refer to how hard I’m trying.
In any event, after I drafted yesterday’s post, I spent some time contemplating—that is, I took a shower and had ten minutes to myself—why the subtle naysayers bother me. I won’t mince words: They do bother me! Here’s the reason:
When Martin has a week like this week has been, then at least a dozen times daily the idea of throwing in the towel drops into my head. Yes, I contemplate quitting the recovery process. I hear the little voice that says it would be easier, so much easier, to live according to the traditional notion that autism is a behavioral or communication disorder and therefore should be treated just with behavior therapies.
And when that little voice in my head is speaking, what I need is to hear a bigger, louder voice—preferably outside my head—reminding me that (1) “autism” is the symptoms of an underlying immune disorder, a medical condition that should be treated like any other need to heal; (2) recovery is bound to be a series of ups and downs, and ultimate success is more likely to come from surviving the downs than celebrating the ups; and (3) although it would be easier, right now, to give up biomedical treatment, leaving Martin untreated would be harder in the long run, for him as well as for me and Adrian.
That bigger, louder voice is never going to come from a subtle naysayer. A subtle naysayer looks for cracks, looks for weaknesses, to insert seeds of doubt and coax me away from the “extremes” of the recovery process. A subtle naysayer might think s/he is being helpful: If I’m sleepless, and alternating hope and desperation, and preoccupied with Martin’s special diet and supplementation and everything else, wouldn’t I be happier with none of that to worry about?
So I can’t turn to a subtle naysayer for help. Not even in a week like this, when I need all the support I can get. Indeed, especially not in a week like this, because when I’m at my lowest is when a naysayer is most likely to strike.
Which leaves me with Adrian, other families in recovery, and the few people outside the recovery community who truly understand.
I wish there were more.
Most email traffic that passes through FindingMyKid@yahoo.com congratulates the progress we’ve made with Martin. Some correspondents compliment me (thanks!) for presenting the difficult aspects of recovery, too, instead of pretending every moment is roses and wine. A few parents bemoan their own children’s lack of progress.
I want to speak to the parents who feel like they aren’t making progress. To be honest, despite the progress we’ve made, wine and roses are far, far, far from our everyday reality. That’s not to say that recovery isn’t the series of joyous breakthroughs I present in this blog. It is rather to admit that these developments punctuate long stretches of “no change” or even apparent regression, which I prefer to call “the reappearance of former symptoms.”
My last couple posts referred to the bad week Martin’s been having. Let’s add some more depth and talk about yesterday morning—
I knew the morning would be tough, because Martin took almost two hours to fall asleep the night before and was bound to be tired. At 5:55 a.m., as usual, I carried Martin from his room to our bed, to wake up with Adrian.
Around 6:35 a.m., as I was putting the final touches on breakfast, I heard yelling, whining, and a scream or two, all from Martin. I found Adrian trying to get Martin dressed. Martin was in a fetal position, refusing to cooperate. He said, “No! I want to stay here today! I don’t want to go to school.” Then, frustrated, he switched to the nonsensical: “I don’t want you! I’m going to sleep at school! I don’t want to come home!”
Adrian waved off my offer to assist. I returned to the kitchen. Ten minutes later, the crying and complaining uninterrupted, Adrian and Martin appeared in the kitchen. Martin was dressed, save for the “crazy socks” he was supposed to wear for Dr. Seuss appreciation week at school. His whine had become, “I don’t want to wear crazy socks. No! No! No! I don’t want breakfast.”
We got him seated at the table. Although he has a chair with footrest that facilitates using his legs and core to sit up straight, Martin slouched. When he saw his breakfast (turkey bacon and vegetables, pretty standard), he lowered his voice to the continuous, slurred word-melding that I detest. “No food oh Mommy oh Mommy oh Mommy Mommy Mommy no no no.” He thrust his fists into his stomach and curved his back, a posture that (I think) indicates stomach pain. When I tried to offer him turkey bacon, he batted my hand and screamed, “Noooooo!” He grabbed his glass of “kombucha with seeds,” pursed his lips on the stainless-steel straw, and changed his whine to, “Drink, only drink no anything else oh Mommy.”
Adrian passed back through the kitchen, kissed us both, wished me good luck, and left for work.
I switched on the kitchen television. Sesame Street. Martin’s a bit beyond that now. Still, I thought the distraction might help. Over the next half hour I managed to get his supplements and most of the bacon (none of the vegetables) into his mouth. In the meantime, he left his chair to bounce up and down, slapped at me, used his fingernail to scratch marks in the wooden tabletop, whined incessantly, dumped fish oil on his school sweater, told me to turn off Sesame Street, cried when I turned off Sesame Street, spilled his drink while refusing to take his mouth off the straw, curled himself into a ball around his Curious George sock puppet and wouldn’t release, threw vitamins on the floor, and ultimately dissolved into a tantrum because he had no time to play before the school bus came.
By sheer force of love, willpower, and coffee, I kept my patience and got him on the bus. (“Martin’s not feeling his best this morning,” I told the matron when I handed him over.) Then I returned to the kitchen to sulk.
That’s right, I sulked. Because when you are working hard to recover your child, a bad morning (bad day, bad week, bad month, bad season) leaves you wallowing in a stew of doubts.
• What am I doing to my child? Is this worth it? What caused this meltdown? I think the culprit yesterday morning was probably the nystatin we started last week. I think. But really, who the heck knows? And why would it matter? If something—anything—I’ve done has caused Martin to feel like he did yesterday, am I really acting in his best interest?
• Why have I given up so much to follow to pursue autism recovery? I used to have a career, disposable income, and free time. Now my job is “autism recovery specialist,” our money goes to therapies and supplements, and getting out for an evening requires hours of preparation. Even worse, I’ve met families who claim their children have improved markedly with nothing but traditional therapies like ABA and speech therapy. Why go on?
• By working toward recovery, by rejecting the idea that Martin is bound to autism for life, am I making each day harder, for all of us? Long ago I wrote a post titled “Failure to Grieve.” To this day, I wonder whether Adrian and I would breathe easier if we just decided, Martin has autism. Let’s help him live with it as best he can.
• Other than families in the recovery community, almost everyone I know is a subtle naysayer. I never realized exactly how many ways there are to express skepticism: “Is Martin’s doctor a real M.D.?” “Do you have a regular pediatrician supervising all this, too?” “Is that actually a scientifically accepted principle?” “You’re not going to start saying kids shouldn’t get vaccinated, are you?” “Where did you hear about that?” “Have you tried taking all those supplements yourself?” “Poor Martin! What a shame that he can’t eat like other kids.” And those are comments from people who say they support what we are undertaking. When Martin is doing nothing but spitting venom and whining nonsensically, I think, You know, I really do like fitting in with other people. I think I’ll get off the whacky autism recovery path and go back to the mainstream.
So I sulked. I finished my coffee, and I climbed back in bed for an hour.
Then I rose again, made myself a protein shake, and went to CrossFit. Nothing clears my head quite like loud music and exercising to exhaustion. The truth is that mornings like yesterday are so remarkable only because Martin is getting better. With perspective, I remember the early days when we never knew what Martin was going to do next, and he lacked the language to convey his needs. He used to bolt if I wasn’t holding his hand. He used to cry inconsolably if he wanted to take the 2 subway but the 3 came instead. With perspective, I also reckon that, no matter what the ABA-enthusiasts say, no magic autism faerie is ever going to wave her wand and make Martin better without medical intervention. Recovering Martin’s health and opening him up to full participation in our world of opportunity—that’s up to me. It’s going to happen through my perseverance, or it’s not going to happen at all.
Back to wine and roses: To be even more honest, and less metaphorical, the recovery process has increased my dinnertime wine consumption, Adrian is a thoughtful husband who sends me flowers, and indeed most weeks I buy roses or tulips for our kitchen table vase. The path to recovery is hard. Wine and roses may not be everything, but they sure do help get past the stumbles.
For better or for worse, he’s my guy.
Martin was ignored yesterday.
The church that we attend now—much more traditional than the young, edgy congregation we left behind in Manhattan—includes a “children’s time” in the service. Children younger than age 10 are invited to gather near the chancel, where the pastor engages them with a few questions and tells a Bible-related story. Martin goes, too. The pastor, to his credit, usually calls Martin by name and addresses him once or twice, even if no response it forthcoming. I can’t say that Martin participates fully in the experience. I can say that he likes being included; he runs forward without hesitation.
Yesterday, the regular pastor was away, so children’s time was headed by a choir member who is also an elementary-school principal. Eight children participated. The principal began by greeting several (not all) of the children other than Martin by name. Then, without making eye contact with Martin or calling his attention in any way, she launched into her lesson. Martin, who is unfocussed and irritable this week (see the reference to nystatin in Saturday’s post), responded by fidgeting, lying on the floor, and turning away from the chancel to face the congregation, wearing a goofy smile. Finally, he stood up and drifted toward the organ, which fascinates him.
The principal probably could have halted 90% of Martin’s behavior by catching his attention and saying, “Martin, let’s sit and listen now,” or even just asking him a question about the Bible lesson.
Instead, she ignored him. Talked to the other children. Pretended like nothing was happening.
From being in the church choir, which sits only a few feet away from the chancel where the children gather, the principal must know that Martin sometimes needs extra help. I suppose that, once she was in charge of the group, she might have thought that I wouldn’t want Martin “called out.” In truth, I’d much rather have him called out briefly by an adult than allowed to call himself out with five minutes of inappropriate behavior. Or maybe she just didn’t know what to do, which would be disappointing in an elementary-school principal. In any event, children’s time was unproductive for Martin and uncomfortable for me.
Which brings me to one of those moments when I realize that Martin’s autism has taught me something without my noticing it.
A dozen years ago, a friend of mine mentioned (I have no recollection of how the subject matter arose) Dwayne “The Rock” Johnson being half-black.
“He is?” I asked. “What’s the other half?”
“Asian Pacific Islander. Why? What did you think he is?”
“I don’t know. A white guy, I guess,” I answered, honestly. “Maybe I never really thought about it.”
My friend, who is African-American, laughed. “I guess it’s good if you’re color-blind,” she said. “But I’m not sure thinking that everyone is ‘a white guy’ is the way to go.”
This morning at church brought that moment to mind. It is tempting to believe that the great equalizer is pretending that we are all the same. We are not the same. A person who is black, who practices Orthodox Judaism, who is male, who has a wife instead of a husband, who is single, who uses a wheelchair, whose English language skills are limited, who lacks formal education, or who [insert any of six billion variations here] does not have the same needs I have. It is not good to be color-blind, or physical-challenge-blind, or hyperactivity-blind, or autism-blind.
When your child has autism, you don’t get to ignore difference. Difference follows you around, speaking too loud and out of turn. It demands your attention. I am far more likely, today, to consider whether any trait, from intelligence to handicap to race, is influencing how an individual perceives his environment. I am far more likely, today, to ask myself what I can do to help.
I no longer act like the best course is pretending we’re all the same.
Lest it seem like church yesterday was a wholly disappointing experience, I am happy to report that other parents in the congregation get it. I was worried about Martin’s antics. As I glanced around I saw no disapprobation, only encouraging expressions ranging from, “Calm down. Martin’s with the other kids and he’s happy,” to, “He might be over there checking out the organ, but, hey, at least he isn’t playing it.”
The principal’s mistake notwithstanding, I think lots of us are marching toward embracing myriad needs.
Are you wondering what Martin said last night?
Last night Martin said, “Otherwise.” He came up with the word. He used it properly and in context.
You’re thrilled? You can’t believe it? Here’s what happened:
Adrian and I put Martin in bed at 8:00 p.m. Martin was all worked up, absolutely could not go to sleep. We are fighting yeast again (Martin versus yeast overgrowth, round IV, get your tickets now) and started nystatin on Friday. Martin’s doctor warned me that we might have a difficult week with yeast die-off; so far, our “difficult week” has entailed diminished attention and focus, fleeting eye contact, and unrelenting hyperactivity. Fabulous.
After an hour of bouncing on his mattress and (needlessly) visiting the potty, Martin started yelling the he wanted to go in “the big bed”—my and Adrian’s bed, where Martin is allowed only in the morning, to wake up. Adrian, exasperated, suggested that we let Martin fall asleep in our bed and then move him back to his room. I agreed but said it had to appear to be Adrian’s idea alone, so Martin wouldn’t start thinking he can bug me for big-bed access.
Adrian called Martin to the family room, where we were watching House of Cards. I hid behind the sofa (Adrian’s idea alone!) and listened. Adrian told Martin that he could take a stuffed animal and climb into our bed, on one condition: that he settle down and go to sleep. Did he understand?
“Yes,” answered Martin. “I will go to sleep. Otherwise I will have to go back to my bed.”
That was it! No prompts, no hearing anyone else say it first, nothing. Martin casually lobbed “otherwise” into the conversation, as if it were an everyday word.
As if he’d never once tested in the bottom third percentile for expressive language skills.
Now, if only he’d settled down and gone to sleep….
Finding My Kid 