Yesterday evening, Martin had another real phone conversation with Adrian. “Are you still at the office, Daddy? Are you coming home? When do you think you’ll come? I’m good. I’m drawing pictures with Mommy. Okay. ’Bye.”
Last night, as he was floating to Sleepyville, Adrian mumbled, “These last sixty days or so, it’s so different. He’s like a new kid.”
I’ll take it.
These days I don’t feel so empowered, at least not on a macro-scale. I feel good about what I can do, what I am doing, for Martin. I am pleased to see other biomed moms banding together and trying to provoke change—see, e.g., The Thinking Moms Revolution or The Canary Party. I am grateful that other biomed moms create on-line forums and Facebook groups in which I can participate. As for me, my own engagement in collective action is on hold, not really in the realm of “what I think I can handle right now.” I need to recover Martin. Then I’ll change the world.
That all being said, recently I have joined together with two local special-needs moms (not biomed) to get something done. Actually get something done! Last summer, we were lamenting that our kids don’t have much way to make friends, and practice keeping them, here in our small town. When we make play dates for our kids, they engage in parallel play more than interactive play. There are professional resources available, like the play program that Martin attends (and adores) in the City. Unfortunately, those programs draw participants from a wide geographic swath, making after-school or casual get-togethers impracticable for the kids, and the cost excludes many families.
We three moms decided that what our town needs are facilitated social-skills playgroups for special-education students. And then we decided that, if the need is to be filled—we’re on deck. We formed a playgroup of six kids, grades kindergarten-through-second (ours kids plus three more, none in the same school class); hired a facilitator (a master’s student in elementary special education); found a time that works (late Friday afternoon); and got started, rotating each week among the participants’ homes. The facilitator comes prepared with games and exercises designed to foster social skills like sharing, taking turns, greeting, and getting to know each other.
By the fourth meeting Martin had fallen in love with his new playgroup. He calls his fellow participants “my friends from town.” All week he looks forward to Friday. He talks about whose home we’ll be visiting that week; one morning, he even created his own “Friday play date” schedule, listing out each child and checking off the retrospective house. He asks questions about what his “friends from town” do on the other afternoons. He wants to join them.
When the other moms reported similar enthusiasm from their kids, we knew we were onto something. We put together a formal proposal to bring the social-skills playgroup under the auspices of the local special-education parent-teacher association, which would both help defray the facilitator’s fees and also publicize to other parents who might be interested. Then we coordinated with a local Girl Scouts troop whose young women are interested in working with special-needs kids. As part of seeking their Silver Awards, several Scouts are going to come each week and assist our playgroup facilitator with keeping the kids focused.
Getting this project up and running, when so much else is on our shoulders, feels like a big achievement. We were correct that our town needs social-skills playgroups. As of this writing, enough parents have contacted us that we will be able to fill two additional six-member playgroups when we start our spring term next February.
Yay for moms, making stuff happen.
Let me begin this post by stating that nothing written here is intended to make fun of Martin. This is a post about language, oral stimming, perseveration, and behaviors that, for the most part, are not within Martin’s control. Although some of the verbal stream I’m conveying may, in retrospect, come across as amusing, when this is happening—when Martin is saying these things, nonstop—nothing sounds funny. When Martin is saying these things, nonstop, I could never laugh because I am too busy trying to keep my head from exploding.
Martin has been talking a blue streak this week. I’ve written about this phenomenon before, when Martin starts speaking and cannot stop. It happens most in the morning. It used to be that Martin would repeat one statement, or one statement and several variations on that statement. As his language and other skills have improved, he’s broadened the repertoire. Now when he can’t stop talking, he cycles through many familiar topics.
During breakfast one morning this week, when Martin and I were alone in the kitchen, I tried to capture his monologue. (I call it a monologue because I seldom interjected. I struggle with deciding to what I should respond, especially when Martin wants attention more than an answer.) Through a combination of recording, scribbling, and recalling after-the-fact, I was able to transcribe the following. This is not verbatim, I’m sure, but it’s close:
When I grow up I am going to live by myself. I don’t want to have any roommates. I am going to be a man who has horns. I am going to have long hair. Mommy, when I grow up I am going to eat peanut butter Lära bars. Do they still play concerts in Central Park? Can we go there? I want to go there. I’m not going to school today. Is it your birthday? Mommy, whose birthday is it? Your brother Rudy and your niece Mandy have the same birthday. How old did Uncle Rudy turn on his birthday? Mommy, Uncle Rudy turned 47 and my cousin Mandy turned six. Mommy, how old are you? You are 42 years old. Do all kids have middle names? Do you have to practice to be a crucifer? I’m going to be a crucifer when I’m in middle school. I’m never going to be a crucifer. I’m never going to school again. You should move out. Go! I’m going to live alone. I want you to be my mommy forever. Is Daddy going to keep going to work? When you were with Miss Cara and Miss Eileen and Miss Tomomi during my play date, what did you do? I want your family to have another baby. Are many of my friends only children? Are all of them? In the eighth picture about the fireplace, are you holding me when I’m a baby? When you were a child, was it allowed for children to ride in the passenger seat? You married your husband in 2005.
Martin said all this, almost without pause, as he was sitting at the kitchen table drinking (or, as it were, not drinking) his bone broth. I’m never quite sure what sets Martin to nonstop talking, or whether a monologue like this is oral stimming, perseveration, attention-seeking behavior, anxiety, or some combination thereof. I’m frustrated when this happens, to be sure. I survive by focusing on Martin’s language skills. Do you remember when I was overjoyed that he managed to say, “I want you to do that again”? Compare that with the perfect sentences structures Martin rattled off this week. Those sentences were perseveration, and he could not slow down, but at least he had the words.
At least he had the words.
Without any real statistics to show, I am going to assert that most of us in the biomed community have MAPS doctors for our kids. “MAPS” stands for Medical Academy of Pediatric Special Needs and is the successor term to DAN!, or Defeat Autism Now! MAPS doctors are trained and certified in the treatment of chronic conditions like autism. They help our children with the process of recovering from autism/autoimmune disorder, and with associated issues like epilepsy or food allergies. They’re kind of like general practitioners for children affected by autism.
Then we have other doctors, the host of professionals who accompany childhood, plus (because autism is the symptoms of sickness) assorted specialists. Neurologists, geneticists, ophthalmologists, audiologists, endocrinologists, allergists.
One challenge prevalent for biomed families is finding “other doctors” who respect their MAPS doctors’ efforts. You can imagine the potential conflicts. When we first started biomed, for example, Martin had constant skin rashes, so itchy that he would scratch his legs bloody. We took him to a dermatologist, who diagnosed “sensitive skin” and suggested using Cetaphil “gentle” cleansing and moisturizing products. Our MAPS doctor, recognizing candida overgrowth, asked us to substitute natural products for Cetaphil and work on balancing gut flora to bring yeast under control. (We went with the MAPS suggestion, healing Martin from inside.)
The elephant in a room occupied by both MAPS and non-MAPS physicians is vaccines. MAPS doctors may urge caution when it comes to vaccinating, especially for kids with a history of reactions to vaccines, while non-MAPS doctors may push vaccinations “on schedule” for all kids. Some pediatricians won’t even accept patients whose families feel they cannot vaccinate.
So there are challenges, navigating the biomed path accompanied by non-MAPS healthcare professionals.
When we moved to the suburbs last year, I took the opportunity to find a Martin new pediatrician and dentist. Our practitioners in the City were adequate but traditional. The dentist made me sign forms stating that I had “refused” routine X-rays against her recommendations, and once she applied fluoride to Martin’s teeth even though I had stated at the beginning of our relationship that I didn’t want any fluoride, ever. Our pediatrician was perhaps more conscientious; I had a positive experience when one of her partners took an interest in our biomed approach, and the practice gave us a vaccination exemption of indefinite duration after Martin reacted poorly to the H1N1 shot. Despite those perks, however, the doctors weren’t worth venturing back to the City.
I found a new pediatrician through conversations with other biomed moms. This doctor, though not a MAPS doctor, is knowledgeable about autism recovery. She stocks her office with papers like “The Autism-Gut Connection” and “SIBO Symptoms and Treatments.” I believe she can be a second set of eyes on our biomed protocol, which is a good thing.
The dentist I found on-line. I searched for dentists who have experience working with special-needs kids, and then I followed up with phone calls about whether the doctor minds if we opt out of fluoride treatments. Martin’s first check-up there, six months ago, took place on a weekday morning, when few kids were present. The hygienist wasn’t great with him. When Martin became upset, she tried being noisy and distracting. I had to stop her and explain that, with Martin, the best approach is quiet explanation of what is happening. We were more successful with the rest of the visit. The dentist was able to get a good look at Martin’s teeth despite his protests, and no one gave me any trouble about fluoride.
Unfortunately, both the new pediatrician and the new dentist are far from our home. Last week, as I drove more than 45 minutes for Martin’s next check-up, I questioned whether the dentist was worth the fuss. As Martin’s appointment time passed, and we were still stuck in morning traffic, I thought, No more. This is the last visit to this dentist. Surely I can find someone in our own town who doesn’t push fluoride and is good with special needs.
When we finally arrived, the office was sleepy, with only one other patient waiting. This time I told the hygienist (a different one than last time) up front that Martin responds best to calm words. She understood immediately. When Martin declared that we would get a check-up but would not lie down, the hygienist responded, “Of course not. Here, I will just recline the chair a little bit so you can see the television on the ceiling, if you want.” Martin went for that.
We had a different dentist, too, a man. He began by remarking that he saw on our information card that Martin follows the GAPS diet, and asking how that was working for us. (A dentist! Asking how GAPS is working for us!) I told him, in general terms because Martin was in earshot, about our experience. The dentist responded, “It’s remarkable, isn’t it? My friend with MS made similar dietary changes, and his symptoms have really responded.” Then the hygienist said, “I know someone who has been able to stop taking fibromyalgia medication since she went on a diet like that.” Then both the dentist and the hygienist started discussing their own emphasis on fresh, whole, organic foods.
Martin, meanwhile, behaved like a champion. He let the dentist recline his chair a little more and complete a full examination plus cleaning. He interrupted the procedure only to point to the ceiling television and say, “That’s Nick Jr.!”
When the dentist was finished with Martin, he said, “Martin’s teeth look great. Not having refined sugar is obviously helpful, and you’re doing a solid job with brushing and flossing. As to the fluoride, substituting xylitol is a good choice. More and more of our parents are moving that direction.”
This dentist gives out balloons. Martin requested a yellow balloon.
I, now oblivious to the nearly hour-long drive that had aggravated me, reported to the front desk to schedule our next appointment.
I don’t mind questioning or challenges regarding Martin’s care, as long as the questioner/challenger acts with an open mind, has a stake in Martin’s well-being, and isn’t just playing Devil’s advocate.
But at the same time, it is hard to overstate the relief I feel when everyone is on the same page.
[Note: I know biomed families have mixed feelings about xylitol. I will blog about that at a later date.]
If Martin and I were slighted last week at piano lesson, this Wednesday we definitely were not.
We arrived one minute late, at 5:31 pm. Jason was talking with the needy mother whose son’s lesson precedes Martin’s. As we entered the lobby, I heard that mother saying, “Yeah, well, okaaaaaay…,” as I know her to do when she wants to ask additional silly questions. Forgive my judgment on her questions; she wasted a significant chunk of Martin’s last lesson pursuing the topic of whether her son should wear earplugs in band practice, and pursuing it with a piano teacher who pretty much made clear, up front, that he has no idea whether her son should wear earplugs during band practice. This week, Jason was having none of that. Before Needy Mom even wrapped her “okaaaaaay,” Jason said, “Great! My next student just arrived, so I’ll see you next week.”
Needy Mom looked a little surprised. She said, “Oh! Okaaaaaay…,” which sounded kind of like, “You say that, but actually I’m not done with you yet,” at which point Jason said, “´Bye, then. Hey, Martin!” and took off after Martin, who was already headed toward the lesson space.
Hurray, I thought. Martin wins.
Thirty minutes later, Jason returned Martin to me. His report? “Martin was a little out of it this week”—that’s true! Martin was super-spacey yesterday!—“so we just worked some more on learning the names of the notes he already plays. Sooner or later, it will sink in.”
Yep. As long as we give Martin his share of every opportunity, eventually it will all sink in.
Martin retains significant sensory processing issues. Distant background noises distract him; several times a day, he asks, “Mommy, do you hear a helicopter?” or “Mommy, do you hear that airplane?”, and I do hear the aircraft, but only after I stop my other activities and listen carefully. His eyes, on the other hand, never seem to chase sounds; he hears but doesn’t look. Nor do his eyes guide his hands, at least not well. If I lob a ball to him, the ball bounces off his chest before he brings his arms together to catch, even when his eyes appear to be focused on me or to track the ball. And he’s clumsy. Very clumsy, which I think results from the double-whammy of mitochondrial disorder and sensory processing challenges.
I believe Martin would benefit from audio and/or vision therapy. His HANDLE therapist has been recommending for more than a year that I pursue these therapies, and although I trust her intuition, the time has never seemed quite right until this summer. This summer, after Martin’s language made some real progress, I thought: Well, language is finally getting close, and yet he still has the attention span of a fruit fly. If Martin is going to make significant progress in socializing, or moving toward mainstream school, we’ve got to find a way to make him attend. Getting his senses to cooperate could be a key component. I mean, how can he concentrate if any random stimulus distracts him, or if messages get lost between his eyes and his hands?
I started searching for the right therapist. I did not find him/her. The problem, from my point of view, was that the service providers offered either vision therapy (addressing issues like tracking or overreliance on peripheral vision) or audio therapy (addressing issues like sound distortion and sensitivity). Martin, on the other hand, seems to need help connecting his vision, hearing, and fine motor skills. Integrating.
Six weeks ago I paid a visit to a Central New Jersey mom-friend, whom I’ll call Lakshmi. Lakshmi’s son, Partha, is six years old like Martin, and I’ve known him since he was three, not long after he suffered a regression and lost all language following a vaccination. Partha, I would say, is 90% recovered. Strangers who meet him don’t realize he used to have autism, and he is completing first grade at a mainstream private school with no accommodation other than extra help in handwriting and the speed of his work. Lakshmi has worked miracles repairing the damage Partha suffered.
I was lamenting my fruitless attempts to find a therapy that I believed would address Martin’s integration as much as his vision or hearing. Lakshmi knew just the thing, she said, and described excitedly the improvements in Partha’s attention once they started working with Dr. Deborah Zelinsky, an optometrist who specializes in neural aspects of visual processing. As Lakshmi described the exercises Dr. Zelinsky had done with Partha, and what she had prescribed, I realized I might finally have found the “vision+” therapy I was hunting.
The next day or two I read more about Dr. Zelinsky’s work, including her development of the “Z-Bell test” to measure mismatches between visual and auditory processing, i.e., to figure out why a child might be seeing well and hearing well, but not seeing and hearing well together. Then I phoned and made an initial appointment for Martin. We had to wait a while. Now the appointment is getting close. In less than two weeks, Martin and I will travel to Chicago to meet with Dr. Zelinsky.
I am guardedly optimistic. At some point, once the diet is what it should be and an appropriate educational setting is found and the caregiver takes a few deep breaths, the process of autism recovery becomes a slow assembly line of trying this and trying that to see what sticks.
Soon I’ll find out whether Dr. Zelinsky’s visual processing therapy sticks.
When I was pregnant with Martin, I was in the middle of completing my MFA in writing, and one of my instructors, himself a father, told me this: “You’ll see. When your kid is born, you cats will be just cats. You won’t adore them anymore.”
I’d heard stories of this phenomenon, of the mom who has a baby and then wants to chain the faithful dog outside, or decides that the chattering bird who kept her company all those years wasn’t actually talking. Parents who start a “real” family, only to reject the companions who were family. That wouldn’t be me. My cats had seen me though some tough times, and I intended to return the favor.
“You’re wrong,” I told the writing instructor, and proceeded to bet him a dinner that, six months after Martin was born, I would still be doting on the felines.
I won that bet. When Martin was born, as he grew, when we got the autism diagnosis, and even after we started the all-consuming process of biomed, our cats retained their stature. We have four of them—Levi, Freddie, Edith, and George—all rescued from the street or the pound. Under our protection, they’ve lived luxuriant lives, indoor-only, replete with toys and top-quality food, scratching posts and climbing furniture, cuddling on our bed at night.
Until this summer.
What happened, I still can’t figure out. At the time, I thought it started with Freddie. When we lived in the City, we had some problems with Freddie peeing outside his box. Freddie is a small cat, and nervous. Anything can set him off. We hadn’t had any issues with Freddie in the year since we moved to the suburbs. Then a few months ago, Freddie started peeing outside his box again. And not just a little bit. And not in only one spot, as when we lived in the City. Freddie decided to treat our whole house like a toilet: the bathrooms, the family room and dining room, the throw rugs, Martin’s bed.
Something had to be done. In consultation with the cats’ veterinarian, I experimented. Different kinds of litter. Moving the litter boxes around. Strategically positioning puppy-training pads in areas Freddie hit repeatedly. We made some progress. At least, more often than not Freddie hit a box or a pad, and clean-up was efficient.
Then Levi joined the party. His timing was a wonder. It was a weekday evening, Martin was sleeping, and I had just climbed into bed with Adrian to begin a conversation titled (in my head), “We’ve got to do more to get this Freddie problem under control,” when I heard liquid splashing in our bathroom. I cut the nascent conversation and sprinted to the bathroom to find Levi urinating all over a chair. Levi! Levi, who never in his eleven years had peed anywhere but a litter box! Levi, producing the most dastardly mess.
I swore. I dropped an F-bomb and chased Levi from the bathroom. By the time I had the mess cleaned up—originally, more than a decade ago, I brought the cats to my and Adrian’s relationship, so dealing with their, ahem, issues always seems to fall on my shoulders—Adrian was snoring. Our conversation was postposed until date-night dinner that weekend, by which time Levi had become Troublemaker No. 1. Unlike Freddie, Levi wasn’t just peeing. He was spraying, marking his territory by firing urine directly at walls, doors, furniture, and heating vents. You can clean from dawn till dusk. That smell sticks around.
“I have no idea what’s happened,” I said to Adrian at dinner that weekend. “I don’t know why they’re doing this to us. I think we’ve got to consider the vet’s suggestion, and let them go outside.”
Adrian looked like he couldn’t believe what I was saying. To some extent, neither could I. In the 20 years I’ve hosted cats in my home, I’ve been steadfastly against letting them go outside. To some extent, I was being pragmatic; I’ve lived inside Chicago, New Haven, Dallas, New York City, urban centers inhospitable to feline wandering. But my objection extended beyond simple pragmatism, to generalized affinity for animals. Because of cars, predators, and other dangers, cats allowed to wander have shorter lifespans. Plus, they kill. Inside, my cats kill moths, crickets, flies. Outside, songbirds and mice and squirrels and all sorts of higher orders come into the picture.
As I sat there talking to Adrian, in a restaurant, away (thank goodness) from the cats, I realized something: There is only so much pee I can tolerate. Martin still has trouble at night, and occasional daytime accidents. So I’ve dealt with six years of pee from him already. And there are litter boxes. With four cats, I’m cleaning litter boxes all the time. Now I had pee all over my house. Pee, pee, pee. I was done.
Ever since the Cats Gone Wild! show began, our veterinarian had been advising me to let the cats roam freely. “You don’t live in the city anymore,” she coaxed. “You have more than an acre of property. You live on a dead end with hardly any traffic. Cats allowed outdoors don’t mark inside. They just don’t.”
Adrian and I reached agreement quickly. For the first time since they came to our home, the cats would be allowed outside. I set about taking all responsible precautions, including rabies vaccinations (ugh, let’s not get into vaccinations again!) and flea pills. I asked friends who have outdoor cats, “How do you make sure they come back?” (“They know where the food is,” I was assured.) One Saturday, when we were hanging out on the back deck with friends, we opened the sliding glass doors and left them open. And that was that!
Or so I’d like so say. The truth is that nothing was solved. I came to realize that the originator of the pee problem was neither Freddie nor Levi, but our youngest cat, George. George woke up one morning and inexplicably decided he hated Levi and Freddie. I suppose I saw hints: Instead of four cats sleeping on our bed, there were three, with Georgie elsewhere, and there were hisses and swipes, scratches on Freddie’s nose.
In the face of George’s wrath, Freddie cracked. He started peeing, I think, out of sheer nervousness. Levi started marking in order to warn George off further aggression. Once the cats were outdoors, their true colors became increasingly evident. George strutted around the yard, chasing Levi clear off the property. Freddie kept peeing, too scared to set paw out the door. Levi increased his marking, spraying every ingress Georgie might access, spraying the back patio when he had the chance. When they were all inside, fights broke out.
It was chaos. It was a disaster. I was losing sleep. Imagine this: I have a child with autism, yet what kept me up at night was the fear of who might be peeing where. I woke repeatedly, roaming the house in darkness, looking for signs of trouble.
I’ll skip to where we stand now. As of this writing, Levi and Freddie are living in the basement, and have been for more than a month. Tellingly, they both stopped urinating outside the little box almost as soon as it became clear that they were away from George. And don’t worry too much for them. We have a gigantic unfinished basement. I’ve hauled towels, pillows, and boxes down there to create soft and safe spaces. There are crickets to kill, and—ugh—last week I cleaned up a decapitated mouse. There are ceiling-level windows, under which I’ve placed “cat furniture” so the boys can climb and look out. I moved a chair and table into a quasi-office configuration so that I can spend and hour or two with them each day, working. I’m sitting there right now.
Upstairs, George and Edith are residing, without incident, allowed outside as they want. (I can’t let Levi go outside, because he and George fight. Freddie still lacks wanderlust entirely.)
For now, the problem is solved. The house is clean and fresh. I’m sleeping. Nevertheless, I don’t want Levi and Freddie to live in the basement forever. They don’t deserve it. George started the whole thing. So we’ve come down to this: I’m hiring a cat behaviorist to try to get to the bottom of George’s attitude, of why he started hating Levi and Freddie after years of peaceful coexistence. If the behaviorist can’t help, we will begin trying to re-home Georgie. I will be heartbroken, and I still don’t know if I can do it, but that is the direction we will move.
Why, you might be ask, are you reading all this on an autism recovery blog? What does this have to do with Martin’s journey?
With Martin’s journey, maybe not that much. But it has a lot to do with my journey as I shepherd Martin. There has been too much on my shoulders. I’ve been cleaning and cooking and researching and conducting therapies and finding schools and trying to keep a household together for too long. Too long. These past few months, including two vacations when I took some break from the madness, have prompted reevaluation, as I wrote last week. If in past years I would have indulged the cats their little spats, if I would have lost the sleep to hose down throw rugs at 2:00 a.m., no more. I have autism to deal with, and somewhere under that burden, I have my own life to forge. My cats will always have access to safe and warm spaces, to healthcare, to food, and to company.
Monopolization of my time, or the privilege of ruining my home—those they may have lost. Because autism steals from everyone.
One more thing—I know that, with what I write in this blog, I open myself to ridicule. Deservedly so. As I’ve said before: Homemade probiotic catsup? Camel milk? Spending hours in airport security so supplements don’t get X-rayed? Who does that? And right now you’re probably thinking: A cat behaviorist? Seriously? Who does that?
Think about this: Eleven years ago, when Adrian and I adopted Levi as a kitten, he came with a case of ringworm so pernicious that, after months of unsuccessful treatment, we were forced to take him to a feline dermatologist. Honestly. A feline dermatologist.
So all things considered, Adrian and I might just be getting slightly less crazy.
In my postscript to “Recovery to Go,” dated August 19, I wrote that Martin and I were taking two vacations in a row: first visiting Austria and Germany with Adrian, and then renting a cabin in the Adirondacks with my sister and niece. Having confessed that much of our European vacation comprised dragging an unenthusiastic Martin from site to site, I promised to ask Martin which vacation he liked better and post the results here.
This morning I remembered to have that conversation with Martin. We were in the car, on the way to the dentist.
“Martin,” I said, “do you remember that in August we took two vacations?”
“Yes.”
“The first vacation we went to Austria and Germany, and the second vacation we rented a cabin with Aunt Kristie and Cousin Mandy?”
“Yes.”
“Which vacation did you like better?”
“Both!”
“Both? You liked both vacations the same?”
“Yes.”
“Are you sure? Maybe you liked both vacations, but one of them you liked a little bit more? Did you prefer one?”
“I liked the cabin on the lake with Poppa John, Abuela, Aunt Kristie, and Cousin Mandy.”
“You did? Why did you like that vacation?”
“But-because it was my favorite!”
So there you have it. To the extent Martin had a preference, it was the Adirondack cabin.
Hardly clear-cut, though. Hardly.
Wednesday evenings, for more than a year now, Martin has taken piano lessons at a local music school. He started with the school’s music therapist. When the music therapist left for another job, Martin switched to Jason, one of the regular instructors. Jason admitted that he had no experience with autism or teaching special-needs kids, but he agreed to give it his best shot, and Martin seemed to like Jason.
I think Martin likes Jason because Jason is in his young 20s, plays many instruments, and will let Martin experiment with drums and guitars when his piano time is done. Jason is like the cool older brother in whose basement lair the neighborhood kids gather. I guess that effect is not lost on Martin.
Jason has seemed to take to Martin, too. The first few weeks, Jason met me after each lesson with pearls of wisdom like, “Martin has some trouble paying attention,” or, “Martin has a little trouble getting his fingers to cooperate.” (Hey, ya think?) That being said, it wasn’t long before Jason started meeting me with new ideas: “I just figured out that if I stick letter stickers on the keys, he’ll use his fingers individually,” and, “It’s about incentive. I told him he has to play two complete songs before he gets to bang on the drums.” I was giddy when, after several months with Martin, Jason said, “Guess what? I got another student with autism! He’s a lot like Martin, and now I feel like I know how to teach him.”
At 5:30 pm yesterday I had Martin waiting in the lobby when Jason emerged with his 5:00 student, an apparently typically developing boy. I’ll start by saying, because it’s relevant, that this boy’s mother is a talker. She had a series of questions prepared for Jason. He’s started playing French horn in the school band. Is that going to be good, or bad, for piano? Some people say you should wear earplugs when you’re playing in a band. Should he wear earplugs? Do they sell earplugs here? Are they child-sized earplugs? Do you wear earplugs? I’m going to meet with the band leader. What questions should I ask him? Should I have him call you? How many of your students play in school bands?
Jason responded patiently. Too patiently. As the minutes ticked by, 5:34, 5:37, 5:38, I calculated that Martin was missing almost a third of his half-hour lesson while Jason discussed the previous student.
Around 5:35 I remembered that the same scene has played out the last three times I’ve brought Martin to music school. Jason escorts the typically developing boy to the lobby, spends eight or 10 minutes with that boy’s mother, and then takes Martin for 20 or 22 minutes of lesson time.
The past three weeks it hasn’t bothered me, much. I thought, well, she’s a talker, and Jason doesn’t want to be rude. Yesterday, however, as I sat there listening to Jason and the mother, and not-so-discreetly checking my watch, and soothing Martin’s eagerness to get to the piano, I had another feeling. A terrible burden of a feeling:
My son is being slighted in favor of a typically developing child.
Feelings, perceptions, are hard to settle, aren’t they? I don’t know why I felt, so suddenly, that Martin’s disability had anything to do with Jason spending an extra 10 minutes on the previous student. Between 5:35 and 5:39 pm yesterday (I’m guesstimating), the following ideas came into my head:
Underlying all those thoughts was one thread: No typically developing child would be made to lose 10 minutes of his half-hour lesson, week after week.
I am not a racial minority. Although our family—Adrian, Martin, and I—is Latino, I am of European descent. I have light skin and blonde hair. My first language is English, and I have no accent, not really even any American regional accent. I have no evident disability or physical challenge. I have never known what it is like to navigate the world while facing unequal treatment based on what passers-by (think they) see in me.
My experience with Martin is not comparable to persistent, day-to-day discrimination. Still, yesterday, for whatever reason, I had some inkling of what it must feel like to suspect that people slight you based on perceptions they’ve formed without ever knowing what kind of person you are. Maybe what happened was no such slight. Maybe the typical boy’s mother is always rude. Maybe Jason doesn’t know how to escape her inquisition comfortably. Maybe it was just one of those things that could happen to anyone.
To be sure, having a child with autism makes me sensitive and suspicious. I’ve even accused Adrian. Honestly, I have. Before Martin was born, we agreed that we would raise him bilingual. I would speak only English with him, and Adrian would speak only Spanish. For the first couple years, we stuck by that. When Martin was diagnosed, when he passed 26 months with still no functional language, we consulted several speech therapists, and each told us the same thing: Hearing two languages is not Martin’s problem. His language is delayed for other reasons, and as his brain allows, the English and Spanish will develop at the same rate as if he were monolingual.
Nevertheless, for whatever reason, Adrian stopped speaking Spanish with Martin. He switched to English, and only Samara, Martin’s nanny, keeps up the Spanish. In the darker times, I’ve told Adrian: “You stopped speaking Spanish with Martin because he has autism. You don’t think he’s worth the effort.” On one level, I know that’s not true. I know that Adrian has naturalized, that he’s North American now, that 99% of his life and business is conducted in English, that because he is a professional in an English-dominant field his mother tongue can be a burden, and that it is common for immigrants to assimilate by raising their children to speak English only. I know all that. But the mother of a child with autism has a chip on her shoulder. She just does.
Yesterday, it played out this way: When the typically developing boy’s mother finally shut up [ahem!] and left, and Jason turned to Martin, I said, “Getting a late start today? It’s almost 5:40 already.”
Jason checked his watch and said, “Oh, wow. I’m sorry.”
“It wouldn’t be a problem, but the same thing has happened four weeks now. He’s been missing eight or 10 minutes of every lesson.”
“I’m so sorry! That mom has a million questions every week.”
“I get that, but 5:30 till 6:00 is Martin’s lesson time.”
“Do you want me to keep him late today?”
“No, that’s not it. I just want him to get his whole lesson slot.”
“I’m so sorry. Won’t happen again. I promise.”
At that point, I exited, to walk to the drug store and pick up a few items while Martin had his lesson. In the parking lot, I walked past the other mother and her typically developing son. I considered confronting her, saying something like, “I know you have a lot of questions, but please respect the fact that your son’s allotted lesson time ends at 5:29. I want my son to have his full time.” By that point, however, I’d got myself worked up, too worked up. I feared the message would sound more like, “Listen, it is irrelevant that my son has autism! We pay the same fees you do, and my son is entitled to the same lesson time. I don’t know why you think your kid is so much better!” And so I kept my mouth shut, for which, with 24 hours’ hindsight, I am thankful.
What happened yesterday? Did the other mom figure my son is less worthy? Did Jason slight him? Has he been doing so for weeks?
I don’t know. I’ll see what happens next Wednesday, and I’ll go from there.
I’m exhausted today. I went to bed at 11:00 last night, waiting up for Adrian, who had a business dinner. I set my alarm for 4:45 this morning and didn’t make it that long. As often happens when I’m waiting for an early alarm, I slept fitfully and woke throughout the night. Around 4:25 am I gave up, rose, and looked out the window.
Bingo! There it was, through a part in the clouds: the massive full moon, just waiting to be eclipsed.
Martin is a moon fanatic. He refers to his children’s books about the moon as his “research” and studies them thoroughly. He tracks the phases of the moon daily. Through his updates, I always know whether the gibbous moon is waxing, or waning. For week’s he’s been looking forward to this morning’s eclipse.
Because Martin was excited, I was excited. I did some research of my own and discovered that this morning was truly special. The total eclipse of the moon occurred simultaneously with the rising sun, an event called a “selenelion.” During a total lunar eclipse, the sun and earth and moon form a straight line. During this perfect alignment, it should be impossible to observe the rising sun. What we see from earth, however, is refracted by our own atmosphere. We begin to see the sun before it actually clears the horizon, and we continue seeing the moon, in all its eclipsed glory, after it has sunk.
From 4:30 until 5:30 am, while I prepared lunches and set bone broth to simmer, I monitored the moon every 15 minutes, waiting for the best opportunity to wake Martin. Unfortunately, the break in cloud cover was short-lived, and soon I tracked the moon only by the brightest spot amidst the clouds. Around 5:40 am that bright spot began to dip below the tree line surrounding our house, and I decided I’d have to wake Martin.
I expected him to be drowsy, maybe to take a look outside and fall back to sleep. That didn’t happen. As soon as I picked him up and whispered, “I’m going to show you the moon,” he woke fully and exclaimed, “We’re going to see the lunar eclipse!”
Thus commenced perhaps the most connected morning I’ve had with Martin in four years. Martin and I stood on the dark patio and peered through the trees, trying to catch the glow’s shift from white to reddish. Martin did not fret that we could hardly see the show. I Googled photos that others were taking of the moon, and he drew eclipse pictures on his whiteboard. We waited for the moment when the sun would appear to rise before the moon had set. When kept the inside lights dim in order to watch the sky brighten.
At 6:20 I asked Martin to wake Adrian. Martin scampered down the hall, yelling, “Daddy! Daddy! It’s time to get up,” Adrian asked what Martin had been doing so early, and then the two of them started discussing the eclipse. Then Martin ate breakfast in semi-darkness as he watched the sky slowly come to day.
Writing this, I realize that what made the eclipse special was not just the connection to Martin this morning. It was that I, who care nothing for the moon, had figured out how the eclipse would work and had taken the time to prepare our viewing. Through my child, I had become interested in something (besides autism!). Following my child, I had learned something.
Which is part of what parenting is about, right?
Finding My Kid 