Tag Archives: autism

After Second Week, Open House

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After two weeks of school, we attended open house and visited Martin’s classroom.

Various parents knew each other already and formed their little collectives, to chit-chat about teachers and classroom behavior plans and extracurricular activities. Adrian was late (work), and I knew only one other mom, who herself was late, so effectively I knew no one. I nudged into a few groups, alternately smiled and looked concerned, then sat at Martin’s desk.

He shares a desk with a boy named Lucas, I discovered. I introduced myself to Lucas’s mother, a lovely Central American immigrant. Lucas, the told me, understands Spanish but prefers English (like Martin, these days) and talks about Martin. I suggested getting Lucas and Martin together for a play date. She agreed but warned me that Lucas has had speech and language delays, is socially immature, and has been held back a year in school. I assured her that Lucas’s immaturity would be no problem at all.

The teacher made a presentation about expectations and how she runs the classroom. (In the middle her talk, Adrian managed to show up). Then she invited the parents to explore the classroom. Adrian and I took advantage of the time to bombard the teacher with our questions. How is Martin adjusting? Is he finding other kids with whom he can eat lunch? Can he keep up?

The teacher told us that Martin had needed to do a lot of adjusting, in terms of independence. The first day he had expected someone else to unpack his backpack, and to accompany him to the bathroom, and to make sure his lunch ended up with the other lunches. He had stepped up and learned quickly. (I’ve been realizing that Martin’s old school coddled him too much.) Academically, the teacher said, Martin is “solid.” (I should hope so. He’s repeating second grade.) He is a pleasure to have in the classroom.

Are you sure? we asked. He’s not disruptive or giving you any trouble? He’s able to follow the instruction?

“He’s fine,” the teacher said.

Fine? What does that mean? Is there anything we can be doing to help? Because sometimes “fine” means everything is okay, and sometimes it means there’s trouble. If there’s any trouble, we’ll step in and—

At this point, the teacher’s expression migrated from solicitous to amused. “‘Fine’ means he’s doing fine. Really.” Then she added, “I think you two need to chill out.”

Yes, Martin’s second-grade teacher told me and Adrian that we need to chill out.

At which point we decided to back off and chill out. We wrote a note to leave in Martin’s desk. We mingled with parents. The other mom I knew had arrived by then, and she introduced me to a couple who are seeking a new psychiatrist for their daughter’s neurodevelopmental work-up. I recommended Dr. PS.

As we walked to the parking lot, I said to Adrian, “I think the only way that could have gone better would have been if she told us Martin had been elected class president.”

Martin atop the Empire State Building. Sky’s the limit.

Second Week, Itchy

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In the weekend between Martin’s first and second full weeks of school, he and I traveled Upstate, to attend his cousin Mandy’s birthday party. The party took place at Mandy’s grandmother’s house, a country-kid-paradise with a creek for swimming, endless supply of water balloons, tractor rides, even some sort of gigantic inflatable ball for children to enter and be rolled around the lawn.

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Martin did okaaaay, considering that Mandy, the only child he knew, had twenty other friends to entertain, the surroundings were unfamiliar, and the event was unstructured (which is toughest for Martin). He managed spattered bursts of interactive play but also spent time alone, by the creek or on the rope swing. He wasn’t always where the other kids were.

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That evening, Saturday, brought some excitement. Martin and I were having dinner with one of my high-school friends when my sister, Mandy’s mother, texted to say she and her fiancé were driving my father to the hospital. My father was hospitalized last year for a blood infection in his leg. Saturday afternoon he visited a walk-in clinic because his ankle and calf were inflamed, and the clinic doctor recommended an immediate trip to the emergency room. Martin and I finished dinner, hurriedly said goodbye, and drove an hour to meet everyone at the hospital. (Upstate, every distance is wide.)

At the hospital, lolling in a chair at my father’s bedside (it was late), Martin started to complain that he was itchy, and bumps appeared on his arms. I asked the nurse whether the hospital used any products that might cause Martin to have an allergy. Why, sure, she replied, and enumerated chemical cleaners sprayed about the facility, including on the chairs. Martin continued to itch.

As soon as my father’s situation was under control, I drove Martin to our hotel and helped him scrub himself from top to bottom in the shower. He seemed to feel better. By then it was after 11:00 pm. Martin went directly from shower to bed and soon slept.

The next morning Martin woke without hives and decided to watch television while I showered. From the shower, I heard Martin yell, “It hurts! It’s itchy!” Hurriedly I wrapped myself in a towel and went to find Martin’s arms and legs looking like this—

I had no idea what was wrong but knew I had to do something. I drove him to a local drugstore and purchased the least offensive antihistamine I could find, in terms of additives and colors. By the time we left the drugstore, however, Martin’s arms and legs had returned to normal and he’d stopped complaining. So, no antihistamine. Instead, we went up to my sister’s for breakfast and then started the four-to-five-hour drive home. Everything was fine until twenty minutes from our house, whereupon Martin started to itch again. As soon as we arrived, I administered the antihistamine, and Martin quickly felt better.

The next morning, Monday, Martin woke up fine. Adrian’s car was getting fixed, so I left Martin with my mother-in-law (visiting) and drove Adrian to the train station. When I returned after twenty minutes, Martin was rolling on the rug, screaming. Actually screaming. “It hurts! It hurts! Help!” This time his legs looked like this—

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Martin swallowed more antihistamine, then said it was “hard to breathe,” to which I replied, “Get in the car. We’re going to the hospital,” because I wasn’t going to mess around if Martin was having an anaphylactic reaction. We were barely underway to the hospital, my mother-in-law in tow, when the reaction subsided. Martin was safe, so I diverted toward Martin’s pediatrician, calling underway for an appointment.

“That’s poison ivy,” the physician assistant said, when I showed her the pictures. “He’s covered with poison ivy.” She prescribed steroids and said we could continue with antihistamines. She also examined Martin’s throat and found no evidence of swelling, meaning that his “hard to breathe” comment was probably just frustration and panic. I called Martin’s MAPS doctor, got her okay for the steroids, picked up the prescription, and delivered Martin to school, with a lengthy explanation and bottle of antihistamines for the school nurse.

The poison ivy flared on and off all week long, Martin’s second week in his new school. He was miserable and, as far as I could tell, worn out.

He survived.

And if you’re worried—my father also survived.

Third Day, Positively Sleepy?

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From my perspective, School Day No. 3, which was a Wednesday, commenced as inauspiciously as School Day No. 2. Martin woke himself early by coughing, then had to be dragged from bed to the breakfast table. (Not literally. Everyone be chill.) He barely ate, except what I loaded onto a spoon and lifted to his mouth. (Literally.) He was scratching his legs—bug bites, remnants of Costa Rica—so intently that I made him wear pants, though the forecast was steamy. We trudged to the bus stop where, again, he isolated himself.

If they don’t kick him out of general education based on whatever he does today, I will be satisfied with that, I told myself. It was the best I could conjure, in terms of reassurance.

Beginning at 1:08 pm, I had this text exchange with Darlene, the behaviorist:

[Darlene:] He is exhausted but compliant and doing his work. Looking a little warm too. Shorts tomorrow for sure.

[Me:] On it. I put the pants on him today only because he was scratching the bug bites on his legs! No behavior issues?

Nope.

He has brand-new [school name] shorts and is eager to wear them.

He started laughing at one point this a.m. and was told to stop. He didn’t. Was told to stop or he would move to yellow and he stopped immediately.

The afternoons he is tired so [Mrs. N] asked resource room teacher to pull him in morning during morning work. (This is a maintenance and review period when many ESL students get pulled.) They’re going to try to accommodate that.

He’s definitely doing a lot of writing in school. I know they already wrote up a science experiment and an “about my summer” paragraph. And today he finished a poem about himself.

Overall it sounds good, except for the laughing. On the other hand, if he stopped for yellow that’s an improvement. His old school couldn’t address that behavior well.

He’s doing great.

Thanks, Darlene.

So they did not kick him out of general education based on his Day No. 3.

I told myself to be satisfied with that.

Second Day, Not So Great. Or?

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Martin’s school year started Friday before Labor Day. With the long weekend, the kids had three days off between the first and second days of school. Weird, right?

Labor Day weekend, Martin’s cousin Mandy was staying with us, because her school didn’t pick up until the following Wednesday. Martin and Mandy had an exhausting visit. Friday afternoon they attended a birthday party at one of those “inflatable party zones”—basically, a warehouse filled with bouncy houses. Friday, Saturday, and Sunday nights Martin and Mandy built blanket forts in our family room and insisted on sleeping in them (which meant not sleeping much). Saturday afternoon and Sunday afternoon we had guests. Although it was cool and rainy, Mandy dragged Martin into our swimming pool. Repeatedly. Monday my father and I took the kids to an indoor fun park with trampolines and climbing equipment, and then Adrian took everyone out to lunch. In trying to accommodate both kids, I let Martin have more sweets than usual: juices, fruits, homemade cake and ice cream.

More or less, it was the last great party of the summer.

When Tuesday rolled around, we received the bill for all that fun. I could barely rouse Martin, he was crabby at breakfast, and he refused even to say hi to the other kids at the bus stop. He ended up isolating himself: sitting alone on a rock, running back and forth, checking out. (Mandy, meanwhile, stood next to me and chatted amicably with the other moms.)

When the bus came, Martin clung to me and said, “Mommy! Mommy!” but then boarded without additional delay.

I escorted my father and niece to Port Authority to catch their bus, and then I returned to my home office, because I hadn’t worked all weekend and had to play catch-up. I was glad to have work to keep me occupied; I couldn’t shake the feeling that Martin would have a tough day, being as tired as he was and also thrown into such a new situation.

I arrived at the bus stop early and waited ten minutes before any other parents showed up. When the bus came, Martin disembarked with the other kids and hugged me. He seemed okay. We walked the five minutes home, where I eagerly pulled his binder to check for any notes from his aide.

I found a note. It said: “Martin had a good day.”

I’m a Wreck

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Get used to this: I’m going to post about Martin’s newest adventure, general education. I’m going to post and post and post and post about Martin in general education.

At age two, Martin received center-based Early Intervention services in a six-child, seven-adult setting, that is, one-on-one.

Ages three and four, Martin attended pre-school in a self-contained special-education setting, where he was deemed too unfocused for a 12-child, two-adult classroom. He was placed instead in an eight-child, five-adult classroom, i.e., eight kids, one teacher, two assistant teachers, and two aides.

Martin attended kindergarten, first, and second grade in a self-contained special-education setting, in a classroom with 10-to-12 children and four adults, i.e., two teachers and two assistant teachers.

Two weeks ago Martin started second grade (again; he’s repeating) in our local public school, mainstream classroom, with an aide. That means 21 kids and two adults, i.e., a teacher and a teacher’s assistant, who is designated to assist Martin as needed.

This is a remarkable leap for Martin. For the first time, he will attend school with typically developing peers, and he will have to manage with far less classroom support. He will walk with me to the bus stop—in a 2016 suburb, I’ve learned, an eight-year-old does not navigate two blocks to the bus stop alone—and ride a regular school bus: no more short-bus pick-up and delivery directly to our door. He will eat lunch in a big cafeteria. He will be cast out upon the playground without any planned “social awareness activity.”

He may learn that not every child in his class is his friend.

He may get hurt.

The first morning unfurled with great fanfare. Martin chose to wear a t-shirt bearing his new school’s name. Adrian stayed home from work. He and my mother-in-law (still visiting) and I accompanied Martin to the bus stop, where we found five other families, some we knew and some we didn’t. All the other moms and dads had come to the bus stop, along with an uncle and a couple nannies, so we made quite a crowd. Martin greeted the twins from across the street but otherwise kept to himself. When a parent suggested a first-day photo, all the kids lined up and smiled, and Martin lined up and smiled with them. He even posed and managed to smile toward the cameras. When the bus came, he hugged me and Adrian and his grandmother good-bye—this was appropriate; all the kids were giving hugs—and boarded the bus without hesitation. The assembled adults remained, waving as the bus headed schoolwards. Adrian and I stood in the crowd, waving.

My mother-in-law and I had tickets to the U.S. Open that day. We went, only for a couple hours. I was a wreck, checking my phone constantly. I don’t know what I expected. Maybe a message that Martin was having a meltdown? Maybe a call from the school administrators to inform me, in hushed and apologetic tones, that they’d made a mistake, and Martin wasn’t the right fit for general education?

Our district offers us the services of a behaviorist, Darlene, who has worked with Martin weekly (or so) for more than two years. God bless Darlene. Knowing I would be nervous, she decided to visit Martin’s school that first day and observe him. Early afternoon, she sent me these text messages:

Doing great. When I walked in kids were sitting on carpet. It took me a few minutes to find him. He blended right in. Aide was sitting on the other side of the cluster from him. Teacher said he needs a lot of structure but responds well to it. Said she noticed that he thinks his thoughts out loud but we can work on that. He is participating in discussions and is doing well.

Recess he tends to like the swing. I spoke to Mrs. I [the aide assigned to Martin] and we gave him some small tasks. (Find someone from class, go say hi, go down slide, etc.) Then he could come back and swing. Will explain more later what I’m thinking of how to structure re essential while teaching social skills. Heading to another school! All good though!!

I responded, “Thank you!! This is awesome!”

My mother-in-law and I were home from the U.S. Open in time to join Adrian at the bus stop, along with my father and my niece, who arrived that afternoon for a visit. Martin alit the bus all smiles. With prompting, he told us about his new classroom and teacher and friends.

Day One was in the books.

I was optimistic. Still, as I told my friend Stacey, if this general-education placement doesn’t work out, that won’t mean we’ve failed. It will mean only that we moved too fast.

Food Is Easy

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When we first started biomed, I altered Martin’s diet to remove grains, fruits (except avocado and limited tomato), starchy vegetables, dairy, soy, corn, refined sugar (actually, at that time, almost all sugar), and additives. Like any biomed newbie, I had my moment of standing in a Whole Foods Market trying not to cry because I couldn’t find anything my son could eat. I muddled though with elaborate concoctions. Dehydrated flax-seed crackers. Green purée. Spinach pie. When Martin started eating meat, chicken-and-egg bread.

With hindsight I realize that feeding Martin felt so complicated because I was trapped by my prior notions of diet. How could I replace bread to make his sandwiches? What crackers would he use for snacks? Pizza? Pancakes? How could I create a mini-gourmand with few of the ingredients associated with gourmet cooking? Could I invite friends over and offer them a dish of flax seeds?

Labor Day weekend we had three houseguests: my father, my niece (Martin’s buddy, Mandy), and my mother-in-law. In addition, we entertained friends for lunch on Saturday afternoon and Sunday afternoon. In our early biomed days, this might have created a meltdown scenario. (Mine, not Martin’s.) Not so today. Not so with my new mentality: simple meals, few ingredients of high quality.

Saturday morning, Adrian took Martin and Mandy to the gym so that I could prepare. On the counter I had two bags of baby Brussels sprouts; teardrop tomatoes, basil, and two cucumbers from my patio garden; avocados; red onions; garlic; an orange; and three pounds of potatoes. (I don’t do much with potatoes, usually. Organic potatoes are a once-in-a-while treat that Martin loves.)

The Brussels sprouts I washed and trimmed, then stirred with olive oil and ginger-orange salt and placed in a glass pan. The potatoes I washed and quartered, then stirred with olive oil and rosemary salt and placed in a glass pan. Side dishes—done except for baking.

Next I halved the teardrop tomatoes, sliced one cucumber and the basil thinly, and combined them with red onions, olives, capers, fresh lemon juice, crushed garlic, and olive oil. Salad—done.

Before our friends arrived, I made guacamole, which I set on the patio table next to a tray of raw vegetables. I also filled a dish with peanuts (no peanut allergies present that day). Snacks—done. I also sliced an orange and the other cucumber and put them in a glass jug with filtered water and lots of ice. Non-alcoholic beverage—done. Then I turned on the oven and set the Brussels sprouts and potatoes to bake.

Later, while guests were present, I brushed a large piece of salmon with olive oil, then added salt and capers. Main course for non-vegetarians—ready to grill.

The day before I had prepared a quinoa chocolate cake. To compliment the cake, I put coconut milk, vanilla extract, a dash of sea salt, and coconut crystals into my ice cream maker and set it to churn. When the ice cream was almost firm, I added fresh raspberries. Dessert—done.

That was the food I served: peanuts, and veggies with guac; grilled salmon, Brussels sprouts, potatoes, and tomato salad; cake and ice cream.

Everything was homemade and permissible for Martin to eat. Apart from the cake, preparing the entire afternoon’s menu took about 90 minutes. If our Saturday guests realized they were eating “recovery” food, they made no mention.

For our Sunday guests, the main course comprised burgers and vegetable burgers (no buns), sweet potatoes with coconut oil and cinnamon, garlic green beans, and more salad (the garden won’t quit).

When the time is right, I still enjoy making more complicated dishes; yesterday for dinner I fashioned “nutty patties” out of cashews, walnuts, tahini, onion, parsley, flax seeds (in a yummy way, seriously), and spices. But I’ve realized that life is easier when most meals comprise few ingredients simply prepared. I don’t need “replacements” for bread, crackers, pretzels, and other processed foods. No one misses them, anyway.

Martin Out of Paradise

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Fact: In Costa Rica, Martin slept beautifully. He requested sleepy-eyed early bedtimes, dozed promptly, rose only after 10 or 11 hours. To my knowledge, he woke during the night just once, when a thunderstorm lingered.

Fact: Since we’ve been home (one week), Martin has slept poorly. He lies awake for an hour or more, tosses or talks during the night, wakes too early. Some nights he’s had as little as eight hours’ rest, and poor quality. He’s been exercising plenty: swimming, bouncing at a birthday party, bike riding, chasing his cousin. He’s eaten better than he did in Costa Rica. He’s in familiar surroundings. He can’t sleep.

Fact: In Costa Rica, Martin’s attitude improved. He seemed carefree, less focused on fixations like his iPad and Mickey Mouse Clubhouse. He ate new foods. He walked home alone from a local bar/café.

Fact: Since we’ve been home, Martin’s attitude stinks. He’s been whiny, contradictory, and engaging in opposite-talking. (“I’m never going to use my iPad again! Throw it away!”) He’s grouchy. This morning he refused to try peanut butter on apple. He loves peanut butter. He likes apples. Apparently the idea of combining the two proved too much. An hour later he wandered away from his own bus stop.

Fact: I don’t know what to do with this information.

Martin in Paradise

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For the last ten days we’ve been vacationing in Costa Rica. The “we” comprised me, Adrian, Martin, my mother and stepfather, my two older brothers, Adrian’s mother, and Adrian’s brother. Nine people. Nine people together in a house on the beach, off the beaten path.

I had trouble finding organic fruits and vegetables, and I suspect the papaya we ate may have been genetically modified. I used olive oil that was partially refined. The cookware was aluminum. Martin had seafood daily, mercury be damned. He ate way too much rice, probably too much fruit, and even homemade fruit juice. I found some locally made treats with oats, nuts, and raw agave, but I couldn’t get any intel on whether the oats were gluten-free. I gave Martin the treats anyway.

We ran out of several supplements, enzymes, and antimicrobials (poor planning on my part), including mucuna, serrapeptase, MitoSpectra, Nose & Lungs, cumanda, and Boluoke.

We had no set schedule, so Martin never knew what we might throw at him in a day. We didn’t do his vision exercises. His glasses sat abandoned, unworn.

We pushed his limits, sometimes over his protests. We took him zip-lining and horseback riding, made him a passenger on ATV’s and jet skis, insisted on swim lessons.

He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.

In the face of these shortcomings and stress, Martin—soared. Martin’s had trouble sleeping these last couple months. In Costa Rica, he volunteered bedtime by 7:30 pm and slept 10 or 11 hours unbroken. His iPad requests, which at home are a near-constant whine, decreased markedly. On our few prior visits to beaches (I’m not a fan), Martin has refused to let the salt water rise above his knees. After a week in Costa Rica, he bobbed neck-deep as the ocean waves tossed him to and fro. Daily, he refused to leave the beach.

He conversed with his uncles and answered strangers’ questions. He used new expressions.

Overcoming recent food-choice rigidity, he rediscovered tropical fruits and ate mango, pineapple, and papaya with abandon.

Because we were without North American television, Martin could not watch his fixation of late, Mickey Mouse Clubhouse. He managed without complaint. Instead, he drew pictures.

One afternoon, Martin was at a local bar/café with Adrian, my brother Eddie, and my brother-in-law, Pancho. The establishment was about 300 yards from our house, past a swim pool, an exercise plot, and a several haciendas. I was in the house showering when Martin entered the bathroom and said casually, “Hi, Mommy. I came home alone.” I told him to scram—after all, I was showering—and his statement didn’t quite register until I was toweled and dressed and found a text message from Adrian: “Martin is coming home. Make sure the door is unlocked?” Adrian had indeed authorized Martin to walk home unaccompanied, and Martin had achieved the feat, without getting lost or wandering off.

Just sayin’, I would not have let Martin walk home alone. But Adrian did, and out of the decision came some measure of independence.

I’m not saying that 10 days in Costa Rica brought a miraculously fully recovered Martin. Not by a long shot. He was too distracted to get the full benefit of those swim lessons. The pictures he drew were all of marching bands or orchestras. (He used to draw only pictures of The Beatles. Now he draws only marching bands and orchestras.) He engaged in a lot of oral stimming: “mouth noises,” I call the sucking-and-clucking sound he makes. He showed virtually no interest in the other kids scampering and riding bicycles in the neighborhood. Our last full day in Costa Rica was a bad day; sneezing and maybe teetering on sickness, he requested another round of zip-lining but then melted down and refused to participate. He repeated himself, nervously. He spaced out.

Still, overall, Costa Rica brought us a behaviorally improved Martin. Indisputably.

I don’t know what made the difference. Sea water? Clean air? Reduced EMF’s and cellular radiation? Extended family? Time to be a kid?

We’re on the plane now, headed home to the New York metropolitan area. (You know how I love to airplane-blog.) Martin just told me he wants to watch Mickey’s Clubhouse, when it’s on at home. I find myself questioning whether full and true recovery might require some bolder step, like removal from urban or suburban life.

Would I have that in me? Would Adrian?

What Will We Remember?

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Friends visited us recently with their son Robert, who is younger than Martin and less far along the autism recovery journey. Robert kept his mother busy, as she had to pull him repeatedly away from his fixations—trains, colors—to get him to eat or otherwise join the group.

After our guests left, Adrian said, “Robert can be a handful!”

I replied, “Reminds me of Martin a few years ago.”

“No, Martin never had obsessions like that.”

“Excuse me?” I asked.

“I remember when we always had to take the Brooklyn Bridge home, and how he liked certain train lines, but he wasn’t so challenging as Robert.”

“Are you talking about our son, Martin?”

“Yes.”

“So you’ve forgotten when I had to buy placemats in different colors so he could practice using something other than yellow without having a meltdown?”

“That’s right. I did forget that.”

“And the panic if he boarded a subway and no yellow seat was available?”

“I guess he did that, yeah.”

“Then there were the times when he and I had to wait for the No. 2 subway, because if a No. 3 came instead, he’d scream with fright, even though he knew it went to exactly the same place.”

“You did used to tell me about that.”

“How about when he couldn’t go to school unless he had that pink stuffed bear from Chicago in his backpack? When he had to approach and open every mailbox we passed on City streets? When he refused to enter the wine bar if ‘our table’ was occupied? When he—”

“Okay, fine. He did have all those obsessions. It’s easy to forget what those days were like.”

This conversation made me reconsider the previous posts “So Far Gone” and “Manifesto.” One day, when someone says, “Maybe Martin never had autism,” will I respond, “Maybe not,” because I too have forgotten? How will we bear witness to recovery as more and more symptoms become so far gone that we forget they ever existed?

I have his earliest developmental neurology reports, the ones that describe a child unresponsive to his own parents, unaware of his own name, echolalic, in the first and third percentile of expressive and receptive language. Those tell the early story.

And I have this blog.