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Martin attends our church’s Tuesday after-school program for kindergarten-through-fifth graders. Because the program is volunteer-run, and because I want Martin to participate as fully as possible, I send an aide with him. The aide, Janine, is a special-education professional whose assignment is to ensure that Martin is included, to help Martin with any projects or activities that might otherwise overwhelm him, and to back off whenever Martin is able to handle the situation unassisted. I would accompany Martin myself, except that my presence is nothing but a distraction. When Mommy is in the room, I’m afraid, Martin has eyes for nothing else. Besides, who wants to play with the kid whose mother is hovering behind?

I can’t say that Martin loves going to the Tuesday program. He tries to get out of it whenever possible. (“I’m so tired!” “I don’t feel well!” “Oh, I just want to do my homework.”) Compare that with Sunday mornings, when Martin eagerly accompanies me to church and participates in children’s Sunday school. I don’t know what accounts for the contrasting attitudes. It could be that Tuesday afternoons he is exhausted from school and wants time alone, or that the Sunday school teacher (Sundays he has no aide) lets him get away with only minimal participation. It could be that he doesn’t like having an aide, although he’s never asked to attend Tuesday alone, only to skip the event altogether.

I wrote that verbose introduction to establish that although I am not present at the Tuesday after-school program, I know a lot (through Janine) about what happens there. (Perhaps I got distracted from that point.) Often Janine’s report is super: Martin was asked to light the candles and did so without help; Martin sang along in choir practice; Martin played tag properly in gym; Martin raised his hand and answered questions after storytime. Some weeks Janine’s report is tougher to swallow, such as the two occasions on which no one wanted to hold Martin’s hand during the prayer circle. (He was in the grip of allergies and probably using his hand as a tissue.)

This Tuesday, Janine said that the gym teacher, who usually has the kids count off or otherwise randomly divides them for sports and games, decided to appoint two team captains and let them pick teams. Remember those days from grade-school gym class? Two kids stand up front, pointing to the best athletes first. The chosen teammates join their captains, relieved. I remember well. I was usually the first girl chosen, and I liked that. I also understood why the teachers stopped the process when half or two-thirds of the kids had been picked, and just split the left-overs between the teams. This Tuesday, at the church, the gym teacher didn’t do that. He let the picking go on and on, right down to the very last kid, on and on until only one kid was un-picked, until there was only one kid standing alone, unwanted by either team.

I’m sure you know who that kid was. Take any group of typically developing grade schoolers, mix in one kid with autism, and see who gets picked last.

Martin did not show any overt reaction, Janine reports, but it is always hard to tell what he’s internalizing.

I hate when things like this happen. I hate the insensitivity of an adult who would let that happen. (Next Tuesday I will show up at the church a few minutes before the program begins and explain to the gym teacher, in kind and polite words, the effect of his decision on my son.) I hate wondering how much Martin’s self-esteem suffers from his difference, and the irony that our efforts have improved his awareness enough to know that he’s being left out, but not enough to know how to fit in. I hate wondering whether Martin will ever be fully included.

I also hate dealing with these questions at this time, because Adrian and I are facing a difficult decision. Since kindergarten (he’s in second grade now), Martin has attended a wonderful self-contained special-education school. His class has twelve students, each with autism or some other type of disorder that affects the ability to communicate. The pupils are bright, and they soldier on under the “common core” standards now stamped onto our public schools as widely as vaccination requirements. Adrian and I have realized, however, that Martin is perhaps not being challenged academically; his homework packet takes him no more than ten minutes to complete, and about eight of those minutes are dedicated to arguing with me over whether he can illustrate the homework because he’s bored. Adrian and I have wanted to believe that, even if Martin isn’t challenged academically, at least he has social role models; half the kids in his class have language challenges but no particular social impairments. On the other hand, over the past year, Martin has made enough progress, socially, that he is nearing the level of those social-top-tier classmates. So now what? What is the next level that Martin can reach, if he remains in his self-contained special-education school?

For that reason, we are considering attempting to find a private school, with small general-education classes, that would be willing to let Martin come to school with an aide, at least for the first year or two. Martin might not be ready, yet, to make the jump to general education. Moreover, it would be a one-way street; if we pull Martin from his current school, we will likely lose his placement there, and have no option to re-enroll him. On the other hand, we know that elementary curriculum (public school, or private) becomes advances rapidly in third grade, requiring more drawing conclusions and making inferences. If there is a “best” time to more Martin out of special education, we may be approaching it.

Then I remember what I hate. Even if Martin isn’t challenged in his current environment, at least he’s safe. At least he’s neither bullied nor left standing, alone, when the teams are picked. At least his self-esteem—maybe his most fragile attribute—is padded and protected.

To leap, or to stay safe? Even on that everyday question, autism leaves its mark.

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Adjusting My Attitude

Yesterday morning, I accompanied Martin to the church basement for Sunday school. Sometimes, even still, I do that, if he finishes children’s time at the chancel and looks for me while the kids shuffle together down the aisle. I take his hand, walk with him down the stairs, watch him get settled.

There were extra attendees yesterday, so the Sunday school teacher and another parent added a second low table and asked the older kids to bring chairs. In that commotion, the younger kids, the kids Martin’s age, began filling the chairs as they arrived. Seven-year-old Kara plopped down, grabbed the chair next to her, and called to six-year-old Kasey, “Here! Kasey, sit here!” As a chair arrived to Kara’s other side, she clapped her hands and said, “Derek! Take this one!” Kasey, now seated, joined in and summoned two more friends: “Come sit at this table! Here! Here!” And so it went. The friends rushed for the best seats.

At the original table, which had eight or ten chairs, Martin sat by himself, silent.

I stood in the door for another minute. Eventually, Martin’s table filled, too. The older children, done moving chairs, sat there. Younger children, similarly un-summoned, maybe visiting for the first time, sat there. The leftovers. The left out. Like Martin, they were silent.

Autism is a series of heartbreaks.

Hidden in the heartbreaks are victories. Victories like these: No one had been directly unkind to Martin; no one had said, no, don’t sit with me, I don’t want you here. He hadn’t been included. Nor had he been rejected. (Compare with South America, when the bratty Valentín shouted ¡Cállate! whenever Martin tried to play.) Martin, also, was doing exactly what was expected of him. He had entered the common room, found a chair, and waited for Sunday school to begin. (Compare with months past, when he might have bolted for the piano in the corner, or tried to enter the toy-filled nursery, or insisted that I stay.) Best of all, Martin chose a blue chair, seemingly oblivious to the empty yellow chair right next to him. (Compare to the days when Martin had to sit on a yellow chair, when if all yellow chairs already were occupied, I had to fetch one from another table, when the lack of a yellow seat in the subway meant an ear-shattering meltdown.)

Hey, this my boy. We’ll get there, and we’ll bring the rest of the world along with us.

In Praise of the Wonder Kid

Right around the time Adrian and I were considering a second child, Martin was diagnosed with autism, and we put off the decision in order to focus on getting Martin help. The years since diagnosis have been therapies and special diets and supplements and doctor visits and too little sleep. I was almost 36 years old when Martin was born. By the time Adrian and I cleared our heads enough to think again about a second child, we would have been looking at a 40+ pregnancy. That, combined with the increased risk of having a second child on the spectrum if you already have one, sealed the decision. Martin would remain an only child. All of our resources belong to Martin alone, for his recovery.

But alas, a typically developing sibling sure might help. A brother or sister could provide a full-time role model and, if we were lucky, a buddy to protect Martin from neighborhood cruelty, from slights and oversights and bullying.

With that in mind, allow me to sing the praises of Martin’s cousin, Mandy, who is also an only child. Mandy and Martin were born only ten weeks apart and, though they live four hours away from each other, have known each other since babyhood. They get three or four solid visits annually.

When Mandy came to our home last August—Martin had already turned five, and Mandy was about to—they were finally old enough that I thought Mandy might need some explanation of why Martin seems different. Immediately, I found an opportunity to address the issue: Mandy and her mother (my younger sister) arrived after Martin had gone to sleep for the night, Martin’s regular sitter was at the house, and Mandy was hungry, so I volunteered to take them out for pizza.

Ah, to have a kid who can go out for pizza!

“Hey Mandy,” I said. We were sitting in the pizzeria waiting for our order. “Do you know how to read?”

I knew she didn’t.

“Well, guess what?” I asked. I dragged my voice, to indicate that something amazing was coming. “Martin already knows how to read!” Indeed, Martin started reading young. He read fluently (comprehension is a separate issue) by age four-and-a-half.

Mandy opened her mouth in astonishment and gasped toward her mother.

Ah, to have a kid who gasps toward mom when surprised!

I went in for the kill. “But, Mandy, you know what? You are very good at talking”—she is—“and Martin is not good at talking at all. That’s how it is: Some kids are better at talking, and other kids are better at reading.”

I wasn’t sure this little speech would work.

It did.

Mandy and Martin’s visit that August was delightful. Mandy, who is naturally bossy, in the best way possible, forced Martin to interact constantly, and she decided to talk for both of them. Upon Mandy’s request, and Martin’s acquiescence, they both slept in the big bed in our guest room, and I knew when they woke up because I heard the giggling start. One morning as I stood in the kitchen, they walked through. Mandy had Martin’s arm over her shoulder and was pulling him along by the wrist as she announced, “We decided to go outside.” Martin didn’t mind Mandy’s commanding spirit. It brought out his best. He responded to her every whim, including when she thrust paper upon book in front of him and demanded, “Read this for me!”

The big test came when Mandy had been with us almost a week. Martin had a hippotherapy session, and I brought Mandy along. While Martin was riding, Mandy befriended the farm proprietor’s seven-year-old granddaughter. I could tell that Mandy was impressed to be playing with an older girl, and I thought, This is it. She’s not going to be so eager to hang around Martin when this big kid was in the picture. Maybe she’ll even be embarrassed by her awkward cousin.

Curse me for that lack of faith. As soon as she saw Martin dismount the horse, Mandy scampered over, grabbed his wrist, and ordered him to come play. Then she tugged Martin to the seven-year-old and said, “This is my cousin Martin!”

Mandy came to visit again this February, when my sister and I took the two kids to see The Lion King on Broadway. Saturday mornings Martin usually goes to the Equinox gym with Adrian and plays in the kids’ club there while Adrian works out. The Saturday morning of Mandy’s visit, Adrian volunteered to take both kids to the kids’ club.

After they returned, I asked Adrian whether Mandy had still wanted to play with Martin at the kids’ club, or whether, when in a crowd, she had gravitated to the typically developing children instead.

Adrian reported that when he came after his workout to pick the cousins up, Mandy was indeed playing with the typically developing children.

… And, Adrian said, Mandy was directing those typically developing children to make sure they let Martin play, too.

Thank you, Wonder Kid. Thank you for looking out for Martin.

Mandy and Martin on the beach, August 2013.

Mandy and Martin on the beach, August 2013.

Special Guest Author: My Law-School Roommate on Jammin’ With Martin

Last weekend my law-school roommate, who lives in New Jersey, brought her daughter, Mieko, over to play with Martin. Mieko is five months older than Martin, and the most wonderfully bossy little girl, and one day she’s going to marry Martin. I’m quite confident of this; I’ve been planning the wedding since Martin was born.

(“‘The engagement between them is of a peculiar kind. From their infancy, they have been intended for each other. It was the favourite wish of his mother, as well as hers. While in their cradles, we planned the union . . . .'” Jane Austen, Pride and Prejudice.)

Those far-off nuptials, however, are not the topic du jour. Instead, the day after I dropped my erstwhile roommate and her daughter off at the New Jersey ferry, I received a message through Facebook, which I reprint here, unedited other than the pseudonyms:

It was great seeing you, Adrian, and Martin yesterday.

I wanted to tell you something in the car and didn’t get a chance to. I remember you told me a while ago that Martin could not participate in a kiddie gym class because he was not able to follow what the other kids were doing and would go off and do his own thing. Well, yesterday, I noticed that that was not an issue for Martin anymore. Remember when we were having our jam session? I was on acoustic guitar, Mieko was on electric guitar, you were on tambourine, and Martin was on harmonica. He was definitely aware that we were all playing music together. Not only was he aware that we were having a jam session, but he also noticed a certain someone (Adrian) who was off doing his own thing and was not participating in the group activity! He then proceeded to pull over Adrian to the piano so that everyone was participating together!

What was impressive was that we weren’t all doing the same activity, like everyone hopping on one foot or everyone clapping hands. All of us were each doing something different with different instruments, and yet Martin recognized it as a coordinated activity where each person, doing something different, was together working toward the same goal of creating music. So playing the piano was acceptable to him, but looking at the computer screen was not. I am no expert on child development, but doesn’t that require an awareness of others at a level that three-year-olds don’t always have?

Anyway, the jam session was very fun and very cool!

I take issue with only one part of this message: With twin seven-year-old sons at home, plus Mieko, my roommate by now is an expert on child development. And that makes what she wrote all the better.

A boy and his cat. Martin and George, tuckered out from a hard day of playing with friends.