Terrified

Martin is doing taekwondo now. He’s breaking my heart. He’s supposed to be playing ice hockey. We’ve invested more than a year in skating lessons and hundreds of dollars in hockey equipment. It’s no secret that I reproduced primarily to give the world another hockey player. Hockey, hockey, hockey.

Alas, apparently Martin has a will of his own. Weeks ago, we had a (parent-and-school-administrator-arranged) play date with Spencer, one of the cooler kids in Martin’s new class. Spencer is close to earning his taekwondo black belt. He showed me and Martin some of his moves, and a video of him breaking boards with kicks and punches. Spencer’s family also invited Martin to Spencer’s taekwondo-themed birthday party at the local dojang. You can guess what happened next: Martin announced that he no longer wanted hockey lessons. He wanted taekwondo.

The dojang’s introductory package comes with two private, one-on-one lessons, followed by two group classes to decide whether you want to sign up for good. Martin’s first lesson, with a teenaged black belt named Brian, was kind of a disaster; Martin preferred checking himself out in the mirror to following any actual instruction. (Just like two years ago when we tried karate.) The second lesson, also with Brian, went much better; Martin was more focused and worked with Brian on the kicks and punches. (One of the dojang masters remembered Martin from the birthday party and made a point to say hi and encourage him. I think that motivated Martin.)

So it was time to try Martin’s first group class. As the class was 11:00 a.m. on a Saturday, Adrian brought him, and I received this hearsay account:

The class had one master (the one who’d said hi to Martin) and three assistant instructors, probably teenage black belts like Brian. At first, Adrian thought an assistant was specially assigned to Martin. Subsequently he realized that the assistant instructors were for the whole class but, unsurprisingly, spending more time with Martin. As Adrian observed, he texted me that he thought taekwondo could be very good for Martin.

Twenty minutes into the class, the other dojang master asked if he could have a word with Adrian, in the office.

“I was terrified,” Adrian told me, later. “I thought for sure he was going to say, ‘No more,’ or, ‘Just not the right fit for Martin’.”

“And? What did he say?” I asked, not terrified, but not terrified only because Adrian was speaking calmly, indicating no reason to be terrified.

“He said he thought Martin is going to do well there. He said they have a lot of kids like Martin—he didn’t mention ADD or anything like that, but we both knew what he was talking about—and that martial arts help a lot with focus. He contrasted it with sports where kids can get away with just running around, like soccer.”

Or hockey, I thought, before shunning the thought.

Adrian continued, “The master guy said that his ‘day job’ is as a special-education teacher at [S—] School.” That’s one of the local elementary schools.

“This sounds wonderful,” I said.

“I think so.”

“I would have been terrified, too.”

“I know.”

Having a kid with autism, or ADD, or ADHD, or (I imagine) any range of challenges entails constant fear of rejection (and sometimes, rejection realized). Last Friday, I had arranged an evening play date with a boy in Martin’s new class (Lucas, whose mother I’d talked with at the open house). We planned to meet at a playground. Friday morning the boy’s mother texted me that it was supposed to rain and so we should reschedule. She didn’t suggest any particular time to reschedule. Instantly, I was terrified. Had the classmate found out his play date was with Martin and declared himself unwilling to attend? Did he not want to hang out with the weird kid? I texted back and suggested Tuesday afternoon instead. The mom responded sure, and that she would be in touch Tuesday morning.

I wondered whether she really would contact me Tuesday morning.

I hope she would.

I feared she wouldn’t.

She did. Tuesday morning, she texted asking what time we wanted to meet.

The play date was kind of a bust. The other boy (himself kind of immature, with some challenges, though not at Martin’s level) played mostly with a pre-schooler who happened to be at the playground. Martin wanted to swing, as he always does. The other mother and I made scattered attempts to facilitate interaction, fruitlessly.

Still, later she texted me, “Let’s do it again soon!”

Disaster averted. Nevertheless, we’ve suffered enough rejections and setbacks along the way to keep the terror real, and present.

Whatever Gets You Through the Night

I have coined a new syndrome: My Kid Is in Special Education But It’s Not the Same Way Your Kid Is in Special Education and Mine Isn’t Staying in Special Education So Why Bother Being Friends Syndrome, or MKISEBINSWYKISEAMISSESWBBF Syndrome. I know that’s a cumbersome, but I really think it could catch on.

I encountered MKISEBINSWYKISEAMISSESWBBF Syndrome four years ago, on Martin’s first day in a preschool for children with special needs. Half a dozen parents and caregivers were in the waiting area before school ended. Some seemed to know each other already. I saw a woman alone, as I was alone, so I introduced myself and said it was my son’s first day at the school.

The woman checked me out sideways, without facing me. She wore gigantic diamond-stud earrings, and honestly, her hair looked much better than mine. She was picking up her daughter, she said. Also first day here.

Did they live near the school? I asked. Was it a long trip like we had, coming from another borough?

The woman didn’t answer that question. Instead, maybe thinking that I wanted to follow up personally, instead of just make small-talk, she said that her daughter had spent the previous year in regular private preschool, and that really everything had been fine there and her daughter had no trouble socially or academically, and had many friends, and was now going to this school temporarily to help with some mild dyspraxia, and as she and her husband expected their daughter to return, by next year at the latest, to her regular private school, they were planning to keep her friends and social peers in that school, not this one.

Oh. Okay.

Yesterday, at Martin’s last day of gymnastics, MKISEBINSWYKISEAMISSESWBBF Syndrome struck again. Martin is one of the few kids who doesn’t participate in the JCC’s afterschool-busing program, because that program is offered only to the school district immediately surrounding the facility. He’s jealous of the kids who come directly from elementary school to the JCC by bus, with no mommies or daddies. This week he asked to bring his backpack to gymnastics class and put it with the other kids’ backpacks, I guess so he would look more like them.

“What district do you live in?” the assistant instructor asked when I explained why Martin had his backpack. We had arrived five minutes early, so we had time to chat. I told her our school district and that, right now, Martin has an out-of-district placement and attends a private school in another town. In another year or two, he might transition back to the district school, either to a self-contained special-education classroom or to a mainstream classroom with an aide.

“We’re in that district, too,” the assistant instructor replied. “Actually, my son, Andrew, is just changing schools. He went to first grade at D elementary school, but for next year they’ve just placed him into the self-contained second-grade class at G elementary school.”

This was quite a coincidence. Our district had been trying to convince us to place Martin next year into the self-contained second-grade class at G school—Adrian and I disagreed with the recommendation, thinking it is too early to pull Martin from his very successful current placement—but the district officials had abruptly stopped pushing us a couple weeks earlier, when the last spot in the G school class had been taken. Now I realized that the student who had filled that last spot was this assistant instructor’s son, Andrew.

I like the assistant instructor a lot, and she seems to have a good connection with Martin, knowing when to give him those bits of extra help that make possible his participation in a non-adapted class. I said, “Martin has friends in the self-contained class the year below him and the year ahead of him, and his mainstream friends attend S school and M school. I would love for him to know another student in the self-contained class for his year, so that he’ll have a friend if he moves into that class in third or fourth grade. Do you think Andrew would like to do a play date sometime?”

“Sure,” the assistant instructor said. “I mean, I guess. Actually, Andrew’s trouble is really just remembering what he’s been taught. Just an academic issue. He’s probably not going to be in the self-contained class for more than a year.”

Memory problems. Remembering what he’s been taught. Not like your kid. Not all that autism stuff.

I didn’t bother to get her number for a possible play date, and she didn’t ask for mine.

This post must sound like I’m judgmental toward those moms who suffer from MKISEBINSWYKISEAMISSESWBBF Syndrome. I’m not. Looking at the big picture, isn’t my approach to Martin’s autism a lot like MKISEBINSWYKISEAMISSESWBBF Syndrome? Even if I don’t say it to other parents, I’m constantly thinking, sure, Martin has autism now, but he won’t have it forever. Soon he’ll look more typical. Soon we won’t be in this spot.

And even if I couldn’t relate MKISEBINSWYKISEAMISSESWBBF Syndrome to my own actions, still I wouldn’t judge. As I recently wrote on a friend’s Facebook page, isn’t survival just the art of balancing what’s healthy against whatever gets you through the night? If another mom needs to think her kid isn’t the same kind of special-ed student as my kid, I’m willing to let that be her reality. Whatever gets her through this night.

Birthday Parties and Swimming Pools

Birthday parties and swimming pools. I hate them.

I suppose that sounds harsh. Who hates birthday parties and swimming pools?

The problem with birthday parties and swimming pools is that they expose Martin’s remaining social weaknesses.

Case in point No. 1:

In December, two boys from Martin’s class held a joint birthday party at a Chuck E. Cheese. If you’re an American parent, you’ve probably experienced a Chuck E. Cheese birthday party. Video games. Pizza. Noise and flashing lights. Giant automated rodents manipulating musical instruments.

(Digression. More than three decades ago, I had my ninth birthday party at a Chuck E. Cheese. It may be the fog of time to blame, but I remember the place very differently than today’s Chuck E. Cheese. In my memory, Chuck E. Cheese is dimly lit, with more stages and Skee-Ball, fewer arcade consoles, and—could this be pure imagination?—physical play like a ball pit. Also, a candy counter with mammoth speckled gobstoppers. The candy counter was out front, before the entrance turnstile, and I used to duck into Chuck E. Cheese just to pay 50¢ for a gobstopper so big that I had to extract it from my mouth, repeatedly, until I sucked it down to a manageable size.)

I have written before about Martin’s difficulties when we attend class play dates. Half the boys in his self-contained special-ed class have speech/language delays but no social impairments. The class breaks roughly into three groups: the boys who instigate some imaginary game or roughhousing and play together, the boys who play alone and seem uninterested in joining the others, and—Martin. Martin, who wants to participate in cooperative play yet still doesn’t quite grasp the “how,” or have the confidence, to make others include him. Martin, gazing through the window, never beckoned to enter.

Chuck E. Cheese in December was a disaster. The flashiness overwhelmed Martin, and he couldn’t, or didn’t want to, understand any of the video games. I managed to sit him in front of me on a fake jet ski and run a virtual course for a few minutes, until he (quickly) bored. Soon he went instead to fixate on the mechanical mouse band. He ran hither and fro in front of the stage, occasionally tried to climb aboard, refused to venture back to the game section, where his classmates played.

Late in the party, after the pizza, and Martin’s special GFCFSF pizza, I was happy to find Martin and Jack, one of the more social boys, together in a walk-in video console, all smiles, pretending to play the game. I asked, “What are you two doing?” Jack answered, “We’re shooting aliens!” At that moment, Benjamin, another social boy, appeared. He pointed to Martin and said, “You go home!” Then he yanked Jack’s arm and said, “Jack, come play with me!” Jack obliged, exited the video console, and scampered away with Benjamin.

Martin stopped smiling. He looked at the empty space beside him, and said, “Mommy, I’m ready to go home.”

Yeah. Unstructured group play dates suck. Birthday parties suck double.

Case in point No. 2:

Last week, we were vacationing in Florida with my father-in-law; Adrian’s 13-year-old nephew, Luke; and Adrian’s 11-year-old niece, Rosie. For two days of our trip, we were joined also by another couple and their almost-three-year-old son, Marty. (Pardon the confusion. Their son happens to have the same name as the alias I chose for Martin in this blog. Not my fault. I started the blog before they named their son.)

Luke and Rosie, who see us infrequently and (by Adrian’s choice) have never been told that Martin has autism, showed their cousin due attention, amusing him, sharing iPad games, keeping an eye on him near water. If Luke and Rosie perceived Martin’s differences, they may have chalked them up to the language barrier; neither Luke nor Rosie speaks English, and although Martin undoubtedly understood his cousins, these days he refuses to speak Spanish with anyone except Samara. For the most part, Adrian and I were pleased with the children’s interactions. Rosie even had Martin sleeping in her bed at night.

When almost-three-year-old Marty arrived, however, The Martin Show was over. Once an adorable, lightweight—pick him up! carry him around! push him on a swing!—preschooler is on the scene, who wants to hang around with an awkward, sometimes stand-offish first grader? Luke and Rosie turned their attention elsewhere, and Martin was left to his iPad.

One morning, while the rest of the adults went parasailing, I took Luke, Rosie, Martin, and Marty to the resort’s splash pool. Little Marty was in high spirits as Luke and Rosie sprayed him with water, helped him through tunnels, and solicited giggles. Martin, my Martin, responded by focusing entirely on me, asking just-to-be-talking questions. “Mommy, are we in Florida?” “Mommy, did your cat named Billy die in 2002?” “Mommy, are you looking at me?” I told Rosie that I thought Martin might be feeling lonely. Rosie sweetly approached Martin, took his hand, and asked whether he wanted to climb into the model pirate ship. Martin said, “Go away.”

Martin also complained, to me, that he wanted to leave the splash pool and go to the nearby swimming pool. No one else wanted to leave the splash pool, and whereas I couldn’t let either Martin or Marty out of my sight, I told Martin he’d have to wait. He waited, kvetched, begged. At last I told everyone to move to the swimming pool, hoping Martin might re-engage.

Another disaster. I’d forgot the way Martin generally behaves in a crowded swimming pool. He likes swimming these days, I think because of the sensory aspects. Those same sensory aspects seem to prompt him to turn almost entirely inward. He bounces around the pool steps, half-floating, tunes out other children, and if he speaks, directs the comments only to me. He had followed this pattern for three days already at the resort. I’m not sure why I thought it would change now, and it didn’t.

Luke and Rosie, for their part, took over the complaining, because they wanted to take Marty back to the splash pool. So after 15 minutes of Luke, Rosie, and Marty ignoring Martin in the swimming pool, and Martin ignoring them, I moved everyone back to the splash pool. Martin isolated himself again, this time with the added unhappiness of having had to accede to others’ wishes.

Golden. Martin competing with other children sucks. Swimming pools double suck.

I’m going to put birthday parties and swimming pools out of my mind. Instead, I will imagine fluffy kittens chasing butterflies through a meadow.

It’s not denial. It’s survival.

Martin and Marty at the splash pool, occasionally aware of each other.

Martin and Marty at the splash pool, occasionally aware of each other.

In a nice moment without other kids around, Rosie escorting Martin to the children's area.

In a nice moment without other kids around, Rosie escorting Martin to the children’s area.