I Have Been Buried Under Years of Dust Read online

  ON A DAY in midsummer, Tom, Emily, and I made the trek to Laguna Beach, a small coastal artist community in Orange County known for its surf spots, art festivals, galleries, marine sanctuaries, and hiking trails with fabulous ocean views.

  “What do you think, Emily? Would you like to try living here?” I didn’t know how much she understood, but she was willing.

  The rooms in this converted motel, now designed as a residential care facility for young adults with developmental disabilities, all faced the Pacific Ocean. Staff members, we were told, would help the residents develop self-care routines, learn how to plan their own meals and grocery shop, practice managing their money, and learn housekeeping skills. A common room for playing games and hanging out together beckoned, promising bonding and friendship. There was so much to like. That the facility was located within the cozy Laguna Beach community gave us hope that our young adults would be incorporated into the small-town life and feel as if they belonged—unlikely in the expanse of LA, where someone like Emily might easily get lost in the hustle.

  I spoke with the staff and explained Emily’s situation. “She has behavioral issues.”

  “No worries. We can handle it.”

  “She’s pretty well nonverbal.”

  “That’s okay. We got it.”

  The enthusiasm among our group of parents grew to a febrile pitch. The place would open in August. “You better get her signed up, if you want in. It’ll be full before you know it.”

  The only other option on the table was Pathway at UCLA Extension, but they’d already denied her entrance as a live-in student due to her language limitations and behavioral issues. Pathway said we could enroll her in the program as a commuter student, since they weren’t equipped to deal with the behaviors and lack of language on a live-in basis.

  This beach-living option was the better choice. Still, it was hard to envision her living so far away from us. How would she manage so many of the day-to-day challenges Tom and I were used to mediating?

  “What do you think, Emily? Do you want to try this?”

  “Yes.”

  WE PICKED OUT a room for her on the first floor, nearest the hub of activity—we didn’t want her on one of the upper floors where she would be more isolated—and then started to buy things. This must be what it’s like to be the parent of a college-bound student. Endless trips to Bed Bath & Beyond, Target, and the Container Store followed as we stockpiled lamps and bedding, towels and toiletries, even a carrier to hold the toiletries. A laundry basket, a shower curtain, a chair for the room, art for the walls. Our family room started to look like a warehouse. We gathered enough stuff that we needed to hire a van to transport it all.

  The day the facility opened, we made the drive south to move Emily in. All the others were moving in that day as well. People bustled about, unloading cars and trucks, carrying chairs and linens and furniture. Staff members yelled over the melee; it was absolute chaos.

  Emily did a good job holding herself together as we spent hours arranging her room.

  “Em, I have a special gift for you.” I offered her a small gift-wrapped box. “To commemorate this day.”

  Excitedly, she tore the paper and pulled out the handmade necklace I’d ordered. Made from a flattened silver spoon, and adorned with crystal flowers, the pendant necklace hung on a long silver chain. Her name, as well as my name and phone number, were inscribed on the back, just in case.

  When our efforts were done, the room was gorgeous; all of our preparations had paid off. We looked out her window at the peaceful view of the Pacific. Other parents and young adults stopped by to see the decor.

  “Love those lamps.”

  “What a fabulous room. Congrats, Emily.”

  “Such an exciting day.”

  The staff showed us all the things she could do at Glennwood House: play cards or board games, do art, or put together puzzles.

  She was bewildered. There were just so many people and so much to take in. Of course she was bewildered.

  Within hours of our arrival, the staff developed suspicions about Emily, concerns that she wasn’t going to fit in, that this wasn’t going to work. They watched us incessantly. As the day wore on and started to take a toll on Emily, she got aggressive, mostly with Tom. She hugged him and dug into him with her nails, hurting him.

  “Thanks for the nice hug, Emily.” He tried to downplay it, breaking off the embrace, but one of the women on staff saw. She shook her head in disapproval.

  The facility had been promoted as a place that could handle kids who were autistic and nonverbal, but most of the other residents were young adults with Down syndrome. Almost all of them had cognitive limitations. I wasn’t sure if it was a good fit. Meanwhile, that staff member kept giving us the side-eye.

  WE GOT EMILY’S room settled, her clothes put away, her necklace on. She had dinner with the group and now needed some alone time.

  “Okay, Emily. We’re taking off. We’ll see you in the morning.”

  We hugged and kissed her goodbye, leaving her in her new room, then headed to a hotel.

  If we had it to do over again, I think we could have made it work. The smart thing would have been to rent an apartment for myself nearby for about a month to ease Emily into this situation. At the time, though, we had not thought it through.

  THE NEXT MORNING we returned ready to congratulate her on this move toward independence, all set to high-five her on this step into adulthood. When we entered the facility the smell of pancakes and scrambled eggs filled the space as the staff cleaned dishes from the recent breakfast. I hoped she’d had a good breakfast. She loved pancakes.

  When we got to her room, we were startled. Emily was standing there, still in her nightgown, dazed and befuddled. The lamps that had been so admired by visitors yesterday were knocked over, one broken. Everything in the perfectly appointed room was now askew. The necklace I’d had made for her was broken into bits. Breakfast had come and gone and no one had come to check on her, to invite her to breakfast, to make sure that she ate.

  Every light fixture in her room was lit, the bulbs hot. They’d been on all night. Likely, she’d tried to figure out how to turn them off and knocked them over in her attempts. She may have broken the necklace when she couldn’t figure out how to take it off to go to bed and no one had come to help her. She was visibly exhausted and distressed.

  Best as I could figure out, she’d been awake the entire night, likely standing there the whole time confused and disoriented. It was like the bar mitzvah when she’d been an infant, left standing in her crib, alone and upset.

  My heart broke. What had we done to her? I took her in my arms and tried to comfort her, though she didn’t want my hugs. I tried to look her in the eye but she averted her gaze.

  “Do you want to go home?” I asked.

  “Yes.”

  I wasn’t sure if I wanted to break down and cry or rage at the staff, only that I was so upset and needed to protect my child, whom they’d taken in with no real ability to care for her. We started to pack up the room we’d only arranged some eighteen hours earlier.

  “What are you doing?” A facility staffer passed me as I was carrying a chair back to our rented van. He was perplexed.

  “We’re leaving. Moving Emily back home.”

  “Why?”

  “I was told this was a place equipped to serve the needs of nonverbal autistic individuals,” I said, trying to keep my tone civil, trying not to blow up. “That’s clearly not the case.”

  “Whoever told you that?” he replied. Rather than make excuses, he off-loaded the blame onto me, implying somehow that I was the one who had misunderstood. I could not even respond.

  I’d had countless discussions with the staff prior to this move. We’d explained Emily’s challenges over and over. I’d been assured repeatedly they could address her needs. Clearly, they could not.

  After all that effort, she was a mess and we were done.

  Many of the items we’d so lo
vingly selected for her room I gave away to the other residents. Items still in their packaging that could be returned, we took back with us. We bundled our daughter and those few things into the van and made our way back to safety, back to home.

  “LOOK, CAN WE do this?” I got on the phone the following Monday morning. “I know it’s late and the school year is starting. We thought we had something else in place, but now UCLA looks like the best bet. Can we make it work?”

  I’d previously been in touch with the UCLA Pathway program, but had not yet spoken with the Regional Center,* the California agency that provided support to the students attending the UCLA program. Now I needed both of them on board to make this work. First UCLA agreed. Thank goodness. We needed a plan in place for Emily. Having her home full-time, with us as the only source of entertainment or distraction, was not going to work.

  I called the Regional Center next. “She needs one-on-one support for Pathway, immediately. Can you help?”

  They could. It was like a miracle, how quickly it all came together. If she needed to be a commuter student to attend at UCLA, so be it. We’d make it work.

  PATHWAY IS A two-year transitional program for students with intellectual and other developmental disabilities that provides educational, social, and vocational experiences. The program was promoted as having a really big bonus: Pathway students could attend classes and participate with UCLA students in the social, recreational, and cultural life of a major university. Emily would be with other stimulating, learning young people—at least some of the time. That was a huge draw. She was bright and she thrived when surrounded by others of similar intellectual abilities. This would be better for her.

  EMILY COMPLETED THE first year as a commuter student, and received services from an agency which provided community-based and supported living services for individuals on the autism spectrum. Steven and his associate Cassandra worked for that agency. Steven had learned the ropes of the business from having been an aide himself. We’d developed a friendship with him, and he often came to our house to visit.

  “I know you wanted Emily to live on campus,” he told us one day during a visit. “I’ve been thinking of launching my own company with Cassandra. Emily could be our start-up client. We could arrange to provide her with twenty-four/seven support so she could live on her own at UCLA.”

  “You know it’s more than just the daily living skills?” I asked. “The behaviors can be an issue, as well as her not talking.”

  “I get it. We’ve worked a lot with her.”

  “Would you want to take this on? It’s a big job.”

  “I promise you, we’ll pull out all the stops for Emily. We can make this work.”

  After Steven left, Tom and I talked it over. It had been a year and a half since the Glennwood debacle. We were not even sure we wanted her to continue at Pathway as the program had not delivered as promised. The inclusion with the UCLA students never really panned out. We still wanted Emily to have a life that provided inclusion in her community.

  Now, with Steven’s commitment and his understanding of what we sought for Emily, this might be possible. Together with Steven, we developed a plan for her to live on campus for year two.

  WE SIGNED A lease for a one-bedroom apartment next to the campus, then headed to CORT to rent furniture. We picked out a couch to go in the living room with a fold-out bed for the aide who would be hired to stay overnight with Emily, making sure it was as high-end as possible. We didn’t want the aide to be uncomfortable. We also selected all the essentials: bed, dining set, a television.

  Soon, the apartment was decked out and we had a plan with Steven and Cassandra for round-the-clock care, funded by the Regional Center. The staff helped Emily with day-today skills like cooking, showering, and cleaning her apartment, and they brought her to and from the UCLA Pathway classes and extracurricular activities.

  When she first moved into the apartment, it was an adjustment. After a while, though, Tom and I started to enjoy the freedom. We could go out for dinner on the spur of the moment, plan a weekend away, have a drink if we felt like it, enjoy a little time for ourselves. We worked to reconnect with each other after more than two decades of focusing on Emily.

  Meanwhile, Emily was blossoming. She came home on Sundays to do her laundry and to have dinner with us, but the rest of the time, we could do what we wanted. What a relief.

  THE CALLS STARTED coming soon thereafter.

  “Emily’s aide for tonight came down with the flu and we have no one else. You’ll have to stay with her.”

  “We’re having an incident at Whole Foods. A meltdown. I need you to come right away.”

  “The aide scheduled for tomorrow just quit. If you want her to attend classes at Pathway, you’ll need to bring her.”

  Cassandra or Steven called regularly, despite the fact their agency was obligated to provide her full-time care. Once, when we were in the car on our way home from the airport after a weekend trip away, her aide called. “The guy next door has been hearing all the screaming. He wants to call the police.”

  “No! Don’t do that. Tell him we’re coming right now. We’ll set it right.”

  I calmed Emily while Tom went to see the young man next door, explaining that Emily was autistic and that calling the police would only exacerbate things. “He was only like twenty years old,” Tom said. “A college kid. I don’t think he fully understood, but he agreed to not call in the authorities.”

  We wanted to see how she’d manage in the world without us, but we kept getting tugged back in. I got frustrated.

  “This is ridiculous,” I told Tom. “It’s their job to be sure she has staff coverage. God knows they’re being paid enough.” I never should have trusted Steven.

  “MAYBE YOU SHOULD take her to a movie or something to make up for the fact that the soccer game’s not going to happen,” I mentioned to Emily’s aide Marcia after a planned outing had been abruptly canceled due to weather. Emily had been looking forward to the outing, and when changes happened and she wasn’t fully aware of what was going on, it could set her off.

  A few hours later, Steven was on the phone. “Okay, Valerie. Enough is enough. Marcia did what you suggested and Emily got totally out of hand when she realized they weren’t going to soccer. She screamed and got aggressive. Now Marcia refuses to work for her and I don’t know what to do about this.”

  “You said you could handle her.”

  “I need you to arrange behavioral therapy. This is too much.”

  “What Emily needs is for someone to tell her clearly what’s going on and why.”

  “We do that already. It doesn’t fix it. It’s her behaviors that need to change.”

  Tom was also focused on the behavioral issues. “Her meltdowns were my concern,” he said later. “We needed to rein them in. Valerie was looking ahead more than I was. She understood the communication issue and the frustration it was causing Emily in a way I didn’t.”

  Despite my knowing on some level that her acting out was tied to her inability to communicate, we arranged for additional behavior modification therapy. When Emily was armed with a solid rationale, she was completely reasonable. I’d seen it. When things happened and she didn’t know what was happening, that’s when she got upset—understandably. I would, too.

  Unlike me, she couldn’t say to those around her, “Please explain it to me. I don’t understand.”

  11

  The night Cassandra called to tell us the police were at Emily’s UCLA apartment was in January 2016, effectively ending Emily’s experience with supported living. The agency Steven and Cassandra had formed with Emily as their foundation client was pretty much done with us. Emily had become more trouble to them than she was worth. By the time we got the call, we felt we were battling both the agency and the autism.

  I reported the incident to Emily’s psychiatrist, Dr. Wolf.

  “Well, that’s just so typical of these situations. The aides, the agencies—they’re not listen
ing to who these people are. They’re the ones who allowed this situation to escalate.” We felt similarly, but didn’t know what to do about it. We paid out the lease on her apartment, let the Regional Center know what had occurred, had the rental furniture picked up, and that was that. We were back to square one.

  “WOMAN WITH ASPERGER’S shot, killed by police in Arizona” read a link to a news story on my computer screen. My heart thundered.

  It was two weeks after the UCLA debacle and I was in my office replying to emails. That Tom and I had made the decision to remove Emily from the UCLA apartment and move her home with us felt like admitting failure. Emily appeared defeated as well. We hired Marta Amaya to assist her during the workday and we resumed caring for her during the overnight hours and weekends, as we had throughout most of her life.

  This news link, though, slammed me. I read the article and learned that a twenty-four-year-old woman had been shot and killed by Phoenix-area police after a concerned friend alerted police that the woman might be suicidal. The victim had previously made a popular YouTube video showing how her service rottweiler provided comfort to her and interrupted her self-harm when she suffered an Asperger’s-related meltdown. The woman had reportedly brandished a knife she’d intended to use on herself. Now she was dead.

  In that moment, everything we’d been struggling with for years came into focus. I realized that if Emily didn’t learn to communicate and soon, she was next in line to be shot. Countless times Tom and I had been called to intervene when she’d had a screaming or scratching incident with her caregivers at Ralph’s grocery store, at Trader Joe’s, at Target, times when she’d needed to be restrained and controlled. If we hadn’t been able to intervene during those incidents, the police would have been called. And then . . .

  I started to hyperventilate.