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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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Closer?

Time for another dispatch about church. I write a lot of dispatches about church, because (1) we’re there once a week (or so), giving me a convenient, less-than-daily forum to mark progress; (2) I see Martin with other children, and with adults; and (3) Martin always seems to be engaging in adorable antics at church.

The scene: Pastor has called the children to the chancel for their sermonette before they head to Sunday school. The dialogue: I wasn’t recording, so I’m going to do my faithful best to recreate:

Pastor:            “Good morning, children.”

Children:        “Good morning, Pastor!”

I distinctly hear Martin’s voice amidst the half dozen children. He calls out clearly, “Good morning, Pastor!”

Pastor:            “Today’s lesson was about a mustard seed, a tiny mustard seed. Do you know how some people always think bigger is better?”

Martin:           “No, bigger isn’t better!”

The same clear voice, calling out. The entire church can hear him, I’m sure.

Pastor:            “You don’t think so, Martin?”

Martin:           “No, I don’t like bigger.”

Pastor:            “I suppose when I was your age, I also liked smaller better.”

Martin:           “I’m six years old, but I’m almost seven.”

Now he’s monopolizing children’s time, still clear as a bell.

Pastor:            “When is your birthday?”

Martin:           “It’s this month! It’s the last Tuesday of this month.”

Pastor:            “So you’ll be getting bigger, like this mustard seed.”

Martin:           “Um, look at my new shoes!”

Whoops. Nonsequitur. I suppose Martin wanted to keep the floor but didn’t know how to follow the mustard-seed thought. By now members of the congregation are tittering good-naturedly.

Pastor:            “Where did you get those?”

Martin:           “At the store.”

Pastor:            “It must have been Stride-Rite. Your shoes say ‘Stride-Rite’ on them.”

Martin:           “Yes, of course it was Stride-Rite!”

The congregation laughs. The pastor manages to squeeze in another sentence or two about the mustard seed, then dismisses the children to Sunday school. As their little procession passes down the aisle, Martin looks at me, waves, and calls out, “’Bye, Mommy! I’m going downstairs now,” to the ooohs and aahs of those around me.

After the service, as the pews are emptying and then during coffee hour, I am approached by four different parishioners, each calling Martin “adorable” or “cute.” Even better, one woman who knows Martin has autism comments on how much he’s coming out of his shell. Best of all, an older woman with whom I’ve never shared the diagnosis says, “Your son is so articulate!”

Wait. She doesn’t just say that Martin is articulate. She swoons.

Martin, articulate? My son? Glad I happen to be standing in church, because I’m doing a lot of praising God.

Last month at the AutismOne conference, I met this amazing Supermom from Minnesota, who is working to recover her not-yet-verbal 12-year-old son. At lunch one day with other moms, we started sharing pictures and videos of our kiddos. I called up out a particularly strong performance—a video Adrian and Martin taped from bed that morning, telling me what they planned to do with the day—and handed the Minnesota mom my iPhone.

She watched the video, handed back the phone, and said, “I don’t want to diminish the struggles I know you have, but if I watched that video without knowing more, I would think your son was typically developing.”

Right there, at Maria’s Mexican Restaurant behind the Loews Chicago O’Hare Hotel, I started to cry.

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.

Praise Him in the Morning

I have to tell you about church this weekend. I’ve got to tell you about church this weekend.

The children were scheduled to sing “Praise Him in the Morning” during the service. When the children sing, so does Martin. He attends the church’s Tuesday-afternoon Kids’ Klub each week, where the children practice with their music minister. This weekend was already the third or fourth time Martin has sang at church since December. Even in that short space of time, I’ve seen the level of assistance he needs decrease rapidly. Initially, he stood in the nave with the other children but really didn’t sing, and sort of wandered. Now—

Actually, let me start with something else. The children were asked to arrive 20 minutes before the service, for a final rehearsal. We were late and made it to the narthex only five minutes before the service. I told Martin to hurry and shooed him toward the rehearsal room downstairs. He turned back and started to ask me to come. Just at that moment, one of the women who helps with Sunday school was passing. She said, “Oh, are you going to rehearse? Come on. You can come with me.” Martin hesitated only a second before heading downstairs with her. Until recently, Martin never would have done that. He would have insisted that I come, or staged a meltdown if I didn’t.

I entered the sanctuary with my father, who was visiting for the weekend, and chose two seats on the aisle near the back.* Soon the children, about 20 in total, appeared and headed together down the aisle. Martin left the group and came to me with a happy “Mommy!”

“Hi, Sweetie,” I said. “Do you want to sit with me, or with the other children?”

I don’t think Martin had realized the children would be sitting together near the pulpit (they do that only on “performance” Sundays), because when he saw them filling the front pews, he scampered up the aisle to join them. By then most spaces were filled, and I feared Martin might get frustrated and return to me. He didn’t. He bopped around a little and finally made space for himself amongst the older boys.

The service began. I watched Martin, fearful that, out of my reach, he might do something disruptive. Not my Martin! I can’t say he paid any attention to the service—let’s reiterate: he’s six—but he did sit quietly. Only once did he start talking, whereupon the fifth-grader next to him promptly and effectively shushed him. And once he quasi-snuggled the boy to his other side. (We’re having some issues right now with respecting personal space.) That boy was patient, and the incident passed. Through the opening hymn, the prayer, the Kyrie, the first reading, the responsive psalm, the second reading, and the Gospel, Martin behaved.

Finally the children shuffled onto the chancel. First they sat and heard a three-minute lesson from the director of the mission committee. Then they stood to sing. Martin knocked it out of the park. Not only did he stand almost still; for at least 80% of “Praise Him in the Morning,” he sang along.

(Yes, I recorded the performance on my iPhone. Yes, even before the sermon ended, I had sent the file to relatives and friends.)

After their big performance, the children sang a short goodbye song and headed off to Sunday school. There was a substitute teacher, which in the past might have worried Martin. Not this week. He participated fine. When I reclaimed him for the Eucharist, he was wearing his art project around his neck, a medallion on which he’d written, “I am a child of God.”

After the Eucharist, the pastor asked everyone to sit down, because he had many announcements and business matters to review. By then Martin was antsy, so I let him take his snacks from my purse and walk to the gymnasium, where coffee hour is held. That exercise makes me nervous, because coffee hour invariably includes an open table offering goodies not allowed on Martin’s restricted diet. Furthermore, the pastor really did have a lot to talk about, so ten minutes or more passed before I left the sanctuary and found Martin in the gymnasium.

He was sitting at a small table for children, eating a bowl of fruit. We had this conversation:

“Mommy! I went to the food and got myself a bowl and filled it with fruit.”

“You did? All by yourself?”

“Yes, and then I got this spoon and this napkin, and now I’m eating. I did it all by myself.”

“Martin, that’s terrific. And where are the snacks that we brought from home?”

“Here, look! I made my almond bar into a ball and put it with the fruit!”

I was absolutely tickled by Martin’s independence, and by his wise choice: With the food was a cream-filled chocolate cake, which Martin had walked right by to serve himself fresh fruit. I decided to celebrate by offering him a little orange juice. “Sure!” he exclaimed, and then asked if he could pour it by himself, which he did, without spilling a drop.

Who is this boy? Who is this kid who sits with the other children instead of with me, who sings with the chorus, who makes good choices and takes initiative to serve himself? He’s Mr. Independence.

He capped the performance Sunday evening, when we went out to eat. At the particular restaurant, Martin can eat the burger (grass-fed beef, with no additives) or the fish cooked in olive oil. He refused to reveal his choice until the waitress came. After I ordered, Martin asked me, “Is it my turn?” Then he looked directly at the waitress and said, “Um, I would like to order a burger, please.” I was about to begin reciting the additional directions when Martin stopped me and said, by himself, “No bread, no bun, please.” The waitress asked, “Would you like cheese?” Martin replied, “No. I can’t have that.” My job was limited to whispering, to the waitress, “Could you substitute steamed broccoli for the French fries?” And we were done.

I don’t use this term much: It was one heck of an FUA day.

*Informative note: In the suburban church we attend (new since we moved), the younger kids don’t stay for the sermon. After the Gospel reading and a short children’s lesson with the pastor, they proceed to the basement for Sunday school and don’t return until the Eucharist. Until last December, I didn’t stay for the sermon, either. I accompanied Martin to Sunday school, to help him participate and make sure he didn’t monopolize attention. One Sunday in December, the Sunday-school teacher, whose own son is recovered from autism, told me, “You don’t need to be down here anymore. We’re fine.” I expressed skepticism, and she said, “Really. Go upstairs. Sit near the back. I’ll send one of the older kids up if we need you.” I made it about ten minutes before I snuck back down and peeked in the door. They were fine. Martin was playing. No chaos.

Since that Sunday, I walk downstairs with Martin if he wants me to—which happens less and less—and then I return to the sermon. Still, I choose a seat on an aisle, near the back, in case the teacher needs me. Once, an older child came upstairs to ask me whether Martin could eat the gummy snacks they were having. He couldn’t, so I whipped a GAPS-compatible brownie out of my purse. That’s the only time I’ve been needed.