I FINALLY SUCCEEDED in moving her back to the local public school. There, I met a science teacher who saw potential in Emily. “I think she should be in honors science,” he said. “It would be a calmer environment for her, and she would do better there than with the kids in the regular class.”
We were thrilled and whole-heartedly agreed. The principal, however, was opposed.
“As a special education student, Emily is ineligible for honors classes.” He refused to move her, even though the teacher had requested it. Whenever we questioned these kinds of decisions, that principal gave the same refrain in a sarcastic voice.
“You know what’s so special about this student? Her parents are what’s so special.” He, a professional educator, a principal, derided us for advocating for our child.
I later had to write a cease-and-desist letter to this principal, who’d decided he’d videotape Emily in class to demonstrate that she had no business attending general education classes. My language in that letter was harsh. That’s what it took, and how nasty things got, over and over again.
EMILY GREW AND adolescence became an issue. I couldn’t always tell how much she understood about anything I told her, so I didn’t go into a long, detailed explanation of menstruation to prepare her. I just kept my eyes peeled for signs that I’d need to address it. One day, I was preparing the laundry when I saw blood on her panties.
“Emily, honey.” I took her into the bathroom and showed her a box of sanitary pads. “You’re having a period.” I had her remove her stained underwear and handed her a fresh pair. “This happens to all women; it’s nothing to be alarmed by. You will need to use a pad when this happens.” I showed her how to use it. She wasn’t bothered in the slightest. In no time, though, Tom and I noticed the hormonal shifts. On the days leading up to her period, what I had previously thought was impossible happened: the meltdowns got even worse, the screaming louder, the upset greater.
I’d always had wicked PMS, and now the same hormones were wreaking havoc in Emily. Even Tom got into the act. “I started to feel like I was having PMS, too,” he said. “It was all too much.”
I talked with a gynecologist who suggested birth control pills to regulate her cycle and even out the hormonal roller coaster. Emily took a dose that gave her a three-month respite between periods. When we moved into the pink pills in the pack, I watched out because her period would start soon.
That said, throughout this time we tried to transfer personal agency to Emily. We communicated with her regularly that she had the power to shape her world, to control it, to be the one setting the agenda rather than us.
We enrolled her in a technology-oriented charter school for ninth and tenth grades, but it did not go well. As the academic load grew heavier, students dropped out to go to other schools. We were hoping to stay put, tired of moving her about, until an incident on Valentine’s Day when she was in tenth grade changed everything.
I had just dropped Emily off and was watching to be sure she entered the school when I noticed a boy standing at the entrance to the school with a big basket of roses. As each girl approached the campus, he kind of bowed and offered her a rose. A sweet gesture for Valentine’s Day, right?
When Emily approached, he extended a rose. Lovely. That would make her day.
Just as Emily reached out to receive the flower, he snatched it back and laughed at her. I could see her face, the upset, the confusion, the sting of that moment. I wanted to jump out of the car, confront that young man and call him a jerk, report him to the principal, and scream my head off at him. I would have yanked the flower from his hand and given it to her. I didn’t do any of that. I didn’t want to call any more attention to the moment. It was just so obvious, though: the hurt, the bewilderment. It was so painful to watch. She walked away with her shoulders dropped, her head low. I felt sickened and sat in my car crying.
From her recent writings, it’s clear Emily felt relatively accepted and well treated in school, which is at odds with my recollection of those years. Yes, there were a handful of friends and acquaintances who showed her kindness, but many of the young people I witnessed didn’t. They were callous and uncaring. So, either Emily didn’t notice the transgressions I did—she tends to pay closer attention to what people say more than their actions—or she simply chose to set aside those cruelties. Either way, there’s a lot for me to learn in how she handled those moments.
At that time, I wondered if she could handle Birmingham High School, our local district high school that served three thousand students. It might be a less competitive and stressful environment. I didn’t know if she could manage herself and the social dynamics there. We were about to find out.
IN THE PROCESS of attending the IEP team meeting necessary to make that change and ensure that the services Emily had been given at the tech charter school continued at Birmingham, it became clear the district did not support keeping Emily in general education classes. After Emily had spent years as a fully included student, they were now proposing a rollback to a special day class, the same sort of class we’d fled ten years prior, one that would again isolate her from her neurotypical peers. I tried to keep my voice down in the IEP meeting, but failed miserably.
“She’s already proven she can do the work and not interfere with the regular classroom.” I tried not to rail, tried to channel my inner Tom, but after every IEP meeting, I wanted to head to the nearest Mexican restaurant and order a pitcher of margaritas.
Eventually, we got her fully included at Birmingham.
AFTER TORTUROUS YEARS in middle school and the first few years of high school, miraculously, her transition to Birmingham turned out to be what was needed. In no time, she was successful in her classes, and success there begat success across campus. She developed a group of girls she’d sit with during lunch, the Lunch Bunch. These girls all took to her. When they heard it was her birthday, they surprised her with a cake and goodies. Emily was in heaven; she felt welcomed and glad to be in school. She took art classes, and even had a job delivering summonses from the nurse’s office. One of the service clubs that only invited kids with the highest GPA asked her to join unofficially. She didn’t qualify based on her academic grades, still, the club made space for her. She was featured in the yearbook picture with the other members and was given a club sweatshirt. She couldn’t do everything the others in the club did, but she did help out at events, cutting up fruit or whatever needed to be done. By the end of her time at Birmingham, she’d received academic awards. Even after a tough start with a choir teacher, who had no patience for her in his class, another music teacher welcomed her. And so it went.
IT’S IMPORTANT TO realize that kids like Emily are developmentally delayed in every way possible. While her classmates were all fully ensconced in the throes of adolescence, she was a number of steps behind them. Her brain might have been able to do things that her peers were doing, and her body was keeping up with ovulation and other milestones of maturation, but behaviorally and socially, she was nowhere near where they were. Kids in high school are making choices about having sex, or smoking pot, or drinking and driving, and they’re all enjoying a new level of independence. Emily was not grappling with the same decisions, hadn’t matured to make those choices, and was still quite dependent on us and her aides. If I didn’t point out to her that she was having a period, for example, she might not notice. There was always a gap between her and her classmates beyond her inability to speak. When events like dances and proms came onto the scene, we were heading into dicey territory.
“MY SON WOULD be very, very happy to take Emily to prom,” the mother of one of Emily’s friends said in her junior year. The woman’s son was a high-functioning Asperger’s kid who’d invited Emily over to his house a few times.
“Are you sure? Maybe your son’s already been invited to the dance.” The boy had never shown that kind of interest in Emily. Emily would be fine staying home on prom night, or Tom would take her.
“No, no,”
the mother insisted. “We’ll take her,” she said, then corrected herself. “He’ll take her. It’ll be wonderful.”
I worried this plan was something the mother had cooked up on her own, but she kept insisting. When I told Emily, she was excited. Most high schoolers want to be asked to the prom.
Emily had her hair, makeup, and nails done. We bought a new dress and shoes. I ordered a boutonniere for the young man and planned to drive the two of them to the dance, along with an aide to be with Emily for the duration, in the shadows, to assist if needed.
As the night of the prom got closer, I relaxed. It would all be great. She’d have a wonderful time. I didn’t need to be so overly worried.
“How’d it go?” I asked the aide when Tom and I retrieved them at the end of the night. She curtly shook her head at me. The boy, meanwhile, got into the car without saying a word. The next day the aide told us what had happened.
“It wasn’t good. Emily tried not to let it get to her,” the aide said, “but it was hard.” When they got to the prom, the boy didn’t want to dance with Emily. He didn’t sit with her, or try to interact with her. Tom and I heard he’d had social struggles due to his Asperger’s and had recently found himself invited into the “in” group at school. Now, apparently, having Emily at his side threatened to torpedo his social rise. “He did everything he could to distance himself from her, and when it came time to take photos together, he flat-out refused,” the aide said.
The photographer quickly realized what was going on, according to the aide, and got angry with the boy, trying to persuade him to be more thoughtful and decent. All to no avail. The photographer took a picture of the boy on his own, and then one of Emily on her own.
It sickened me. I wished the mother had never put her son up to that. Emily would have been happy to go with Tom or wouldn’t have cared if she’d missed it. She did not need the experience or deserve the humiliation.
A few weeks later, the prepaid prom photo came in the mail. Emily and this young man were pictured together. How was that possible? He’d refused to be photographed with her. Then I figured it out: the photographer must have felt badly about what had happened and photoshopped it.
It was such a wonderful act of kindness, and I was touched by his gesture. Still, I put the photo away, under a pile of bills.
Prom night was a small setback, as Emily thrived in her large suburban public high school. Students knew her and liked her. Tom and I attended back-to-school nights, and as we walked the campus with Emily other students yelled out, greeting her by name. A group of neurotypical girls from her dance class liked her and invited her to do things with them occasionally. At Christmastime, they invited Emily to the mall on a shopping outing.
I was so grateful I bought the girls, Emily included, long-sleeve holiday T-shirts with reindeer on them. They all looked so cute in the shirts and Emily could not have been more pleased to be part of the group. I forgot all about that excursion, other than to hold on to the girls’ kindness.
Ten years later, I was speaking to a group of behavioral aides who’d just been trained to work with students like Emily, about three hundred of them. I talked about the value of inclusion in high school, how important it had been to Emily to be with neurotypical kids, how much it mattered to her. After the talk, one of the young aides-in-training came up to me.
“Is the Emily you’re talking about the one who went to Birmingham High?” she asked.
“Yes.”
“I’m one of the girls who took Emily to the mall over Christmas break. You gave us these T-shirts with deer on them,” she said to jog my memory. “The whole reason I’m in this field now is because of Emily.”
It was Emily who’d inspired her, she told me. She’d seen Emily in her academic classes, in her dance class, and had noticed her with an aide. Observing what Emily was capable of doing with her aide’s help had changed this young woman’s life. She was now looking forward to providing another young person with the kind of access Emily had experienced, and eventually becoming a speech therapist.
“If I hadn’t met Emily,” she said, “if she’d been kept sequestered in a special needs classroom, my career path would never have become apparent. It was all because of Emily.”
The thing I have to keep in mind when I remember the sometimes-painful moments from her past is how instrumental Emily has always been in touching the lives of others. No, she didn’t have close, intimate conversations with her peers in high school, she didn’t have BFFs, she didn’t go to prom in a frame-the-moment kind of way. She was always one step removed from the typical adolescent experience. We’d walk down the school hall, though, or run into kids outside of the campus, and they’d say hi to Emily and acknowledge her. She gathered a wide-ranging group of people around her, and was known by just about everyone in that high school with some three thousand students. Her presence had an impact. By the time her years at Birmingham ended, it was a high point for all of us.
When I was about 13 Mom said it time for me to start being responsible for myself when I was out in the world. That meant I needed to start carrying a purse. Mom picked it out for me—she’s the shopper in the family, though she always makes sure I approve, of course. The purse was gray with a long shoulder strap, nothing fancy but practical. She taught me to carry my wallet and keys, a cell phone, my ID, as well as feminine hygiene products. I also learned how to use a credit card.
At first, I found it a nuisance to carry the purse but she was insistent. She also taught me how to use the alarm system in the house—an intimidating thing—but it gave me control and independence. These were responsibilities I could have allowed others to do for me, but I needed to learn to do them for myself. Once I understood the reason for these things, I was motivated and would learn.
By the time high school rolled around, I knew it was the age when many make friends and have a group to hang out and chat with. I missed out on a lot of that. Still, I knew people and interacted with them. I had an aide with me who encouraged me to interact more than I did but I was really intimidated by the conversation aspect. I get that she wanted to push me, but in my mind I was there for school and tried to stay focused on the academic aspects rather than the social ones. I was acquainted with many kids, though.
There was a boy, one who listened to music with headphones. He’d give me one earbud and I’d listen with one ear and he’d listen with the other. I think it was like pop music—not my stuff, I prefer classical music—but I liked the experience we shared. That was nice.
At school there was another very nice boy and he was not autistic. He would always make a point of greeting me. He never lingered too long, which was good because it might have made me self-conscious. We both knew I couldn’t have a long chat or anything, but he called me “Miss Emily” and I can say that it made me feel seen and noticed outside of my autism.
I do think there’s a lot of judgment about nonverbal people and that others make assumptions about us. I realize that most people just don’t know any better. They don’t think you’re intelligent and that you have nothing to say.
When I was in high school, I didn’t know for sure that I’d ever be able to really communicate with others, though I had a picture of being able to do so in my mind. I had the belief that it could happen, though. I always had the belief.
The big thing that kept me apart, though, was that I didn’t have a clear path out of adolescence like most of the others. They could assume that they’d move out of the family house one day, have boyfriends, go to college, or whatever. Those are such normal things that I knew would not happen normally for me. I didn’t know what would happen with me. As I got older, I started to feel more urgency around that. “What the hell am I going to do when Mom can’t speak for me?!” That started to become a worry.
10
EVOKING PLACE
Maybe I’m where I should be but who knows.
Maybe no one here has a goddamn clue
Maybe this will be the end of
the stale me.
Maybe this will lift me out of the muck
Maybe people really are what they say
Who knows, maybe people don’t listen well
I’ll say it louder without using voice
Become the crowd itself, a walking herd
Maybe it’s just a desk inside a room
Maybe it’s where I learn to be me
“I’m signing up immediately. It sounds perfect for my son.”
“Me, too. The facilities there are marvelous—have you been? It’s right by the beach. With all the interaction they’ll have with each other, they’ll barely notice we’re not there. It’ll be great. The perfect option.”
The word flying around among the group of parents we’d bonded with at Valley Beth Shalom, all of whom were raising special needs young adults, was that a new facility opening in Laguna Beach was the promised land. Everyone was excited, falling over each other to sign their kids up.
“That’s pretty far away,” Tom said. “Seventy-five miles. What is that, about three hours if traffic is bad?”
“Still, it might be nice for her,” I suggested.
“You know, a lot of neurotypical kids are still not ready to be on their own immediately after high school. Sometimes they need a year or two at home, attending community college, before they’re ready to venture out. If neurotypical kids aren’t ready for this step, aren’t we asking too much of Emily?”
“But maybe Emily’s ready,” I ventured.
“She just graduated high school. Isn’t this a bit soon?”
We decided we should check it out. To be honest, by this point we were looking for a break for us as much as we wanted progress for Emily. Tom and I were worn down. Once high school had ended, all regular activities for Emily came to a halt, except the ones we set up for her. Meanwhile, her screaming at night and sometimes during the days was increasing. We were often bloodied by her scratching, looking like human pincushions. The fact that she’d grown into an adult body with full adult strength didn’t help. We needed a plan to keep her occupied.
I Have Been Buried Under Years of Dust Page 10
