In no time, Tom was on board. While we’d greatly appreciated the behaviorists’ help over the years, we couldn’t be happier to no longer be locked in the behavior modification shackles. I was so sick of the tiny M&M’s, the cajoling, the bits of cookie, the reams of data, the constant presence of strangers in our home, the weekly meetings. And, most of all, Emily’s resistance to the process. Now, with Alicia in place as Emily’s go-to therapy, I had to figure out kindergarten.
I’D RECENTLY LEARNED that I could hire an attorney to advocate for Emily,* someone who might be able to compel the school district to reimburse us for some of these very expensive therapies, as well as for some of the costs of the Montessori preschool. The school district could also give her access to classrooms specifically devoted to special needs children.
Having a lawyer in our corner would be a benefit, and Doreen had long suggested an attorney to us, but I hadn’t followed up. First, I’d needed to make some mistakes.
WHEN WE’D INITIALLY been looking into public preschool options for Emily—before we found the Montessori school—I’d come across one that had interested me.
“I’d like to enroll my daughter in this preschool,” I explained to the school office personnel.
“To be considered, we need to have an IEP in place on her.”
“What’s that?” I asked.
Looking back, I can’t believe that it took so long for me to get clued in. I quickly learned that an IEP is an individualized education plan, a legal document under United States law that is developed for each public school child* in the US who needs a special education. This plan is created by a team composed of the child’s parent(s) and district personnel who are knowledgeable about the child. It lays out the services the school district needs to supply in order for the child to be provided a “free and appropriate public education,” otherwise known as a FAPE.
I found out how to get the IEP process started. Many assessments later, we sat in a room at a local school, eight pairs of eyes facing me and Tom across the table as the assessments from the district’s employees were presented at Emily’s initial IEP team meeting. It was agreed that Emily qualified under the category of “autism”* as well as under “speech and language impairment.” The school district offered her placement in a special day preschool class, designed solely for autistic students. We were thrilled.
WHEN I PULLED up for her first day at this assigned preschool, I noticed that the classroom she’d been offered was not part of the school proper. It was housed in a trailer (described charitably by the district as a “bungalow”) on the blacktop on the farthest perimeter of the school property. This was a way to keep autistic kids segregated.
I took her in and introduced her to the teacher and the aide, as well as the other eleven students. Instead of just dropping Emily off, I stuck around to see what was happening.
From day one, I could see the teacher and aide had no clear organization for the class and its curriculum. All the kids were acting out. Rather than learning from her peers who were doing what we hoped Emily would do—be attentive in class; learn to identify letters, numbers, and colors; engage with her classmates and teachers in a healthy, appropriate manner—the environment inflamed already problem behaviors. Her screaming, stimming, and self-harm became more rampant. The only thing Emily liked about the preschool were the times she could stare out the window at the neurotypical children having fun during recess. She was content then and quieted down. The school viewed this negatively and documented her window gazing as evidence of just how distractible she was.
Indeed, when I next came to visit the class, I found a piece of cardboard taped to the window Emily looked out of. The action was intended to help focus her—the teacher was annoyed she didn’t have Emily’s full attention—but it only forced her deeper inside herself.
The final straw came when I entered the classroom and found that Robert, one of the boys in her class who was extremely challenged behaviorally, was boxed in with movable walls inside the confines of the classroom.
“What’s going on?” I asked.
“His behaviors are too much,” the harried teacher said as she tried to deal with the dozen kids running around her, not listening, screaming, and rocking. “I don’t want any of the others imitating his bad behavior.”
This environment clearly wasn’t helping Emily. I realized then just how different one person’s view of what an “appropriate” education can be. That was the end for me. That’s how we ended up at the Montessori school in Tarzana.
To understand fully my advocacy on Emily’s behalf at this time, it’s important to know the context. Emily was born in 1991, when laws had recently changed to be on her side. Prior to this time, things had been different. Access to educational services for the disabled was codified back in 1975 when President Gerald Ford signed into law the Education for All Handicapped Children Act. This act obligated all states that accepted money from the federal government to provide equal access to education for children with disabilities. Prior to this time, these services were not available in all states. A later amendment required states to provide services to the families of children born with disabilities from the time of the child’s birth.
In 1986, President Reagan signed into law the Handicapped Children’s Protection Act, which gave parents of children with disabilities the right to increased input in the development of their child’s individual education plan. Finally, in January 1990—less than two years before Emily was born—autism and traumatic brain injury were added as categories of disability that the school districts were required to serve.
Over time, I wised up to the IEP game and realized I’d need an attorney to help us figure out how to maximize the benefits to Emily. As kindergarten loomed, I hired a well-respected advocate who’d worked tirelessly in California to change the laws around educational access for disabled children. She had a reputation for being a bulldog. We needed her in our corner.
Working with this attorney, we learned the range of possible services available under federal and California law. That’s not to say that our advocacy in getting those services was easy or the outcome a sure thing. The burden remained on us to demonstrate that these services (speech, occupational, and/or behavioral therapy) would, in fact, benefit her. The obligation to prove our case continued on a yearly basis. In fact, we had to sue the local school district repeatedly to obtain what had been established as Emily’s right under the Individuals with Disabilities Education Act: a free and appropriate public education.
BY THE TIME kindergarten rolled around, I saw my expectation that our early intervention would solve the autism challenge was not going to happen. She was nowhere near ready for a regular classroom: behaviorally, socially, or emotionally. She was clearly autistic. Symptoms we’d seen when she was younger were now in full bloom.
Like with the preschool search, I’d already taken her to four or five private schools to seek acceptance in their kindergarten classrooms. Once they watched how she walked, her reactions, how she dealt with people, the school administrators recognized she had way too many needs for the school to meet. We saw it, too. Every one of those schools said no, even the most unconventional one. Emily could not function independently; we could all see it. By this time, though, we’d had five years to get used to the idea that improvements would not occur on the timeline I’d initially anticipated. Nor would they ever.
I’m used to operating in a world where, if I set my mind to something, I can accomplish it. Now, this was a new experience, not getting what I wanted and being told no. It changed me as a person. I became very patient with Emily.
LOOKING FOR A special education kindergarten, I happened upon Mrs. Morrow’s K-1 “aphasia” classroom in Northridge at a public school. Immediately, I felt at home. For one, Mrs. Morrow’s classroom was part of the actual school building; I was unwilling to go along with the segregation of disabled students that was commonly practiced on elementary school campuses. Mrs. Morrow was
an actual speech and language pathologist who taught language-challenged children in this mixed-grade special ed class. She was a professional who understood the needs of these kids.
The room was organized, the walls decorated in cheery colors. An aide working with the kids was focused on each individual. Mrs. Morrow spoke to the eight or so kids in the class with the utmost kindness and respect. The adult-to-child ratio was much better than anything else I’d seen, and each child was happily occupied. I’d found the needle in the haystack.
The minute I got back into my car, I called our attorney.
“I can’t believe this class. This is like the best in the world. Who knew there were classes like this?” I gushed. “Can we get in?” I asked.
“We’ll do our best,” she said.
EMILY STARTED KINDERGARTEN in that class in the fall. I took a picture on the first day, insistent on marking this as a milestone well known to the parents of neurotypical kids. Each morning, I drove Emily to school, and when I picked her up in the early afternoon we sprinted across town to Alicia’s office, adding a sixty-two-mile round-trip drive on top of the extensive school commute. Emily worked with Alicia from three to six each afternoon, five days a week, even longer on Saturdays.
I still had my private law practice and became a have-briefcase-will-travel attorney to keep up with Emily’s schedule. Either I’d bring all my work files, my car phone (handheld cell phones would come later), and my laptop with me, and basically practice law from my car while she received therapy, or I’d drop her off and Tom, who then worked in Monterey Park, east of Los Angeles, would swing by to pick her up at the end of the day. On the days Tom picked her up, I had just enough time to rush home and prepare some kind of dinner before they arrived. If the pace we’d been keeping previously had been hard, this was grueling. Every day was a new challenge, wondering how in the world we were going to manage.
“THERE’S THIS COMPUTER program we could try,” Alicia suggested. One of the reasons I liked her was that she was on the forefront of what was happening in the world of autism treatment. She’d hear about an intervention that might benefit Emmy and would suggest it to us. If Alicia suggested it, it was worth pursuing. This was 1998 and using computers and technology in this capacity was fairly new.
We signed Emily up for Fast ForWord, a recently developed computer program designed to change neural passages in the brain, particularly those around the phonemic endings of words. Words like “phone” and “photo” can be confused by someone like Emily because the ending of the word can be lost, thus changing the meaning. This confusion is attributed to an auditory processing disorder (different from a hearing loss, which had been suggested by the music teacher when Emily was a toddler), another issue secondary to the overall neurological compromise.
Emily sat in front of a computer screen wearing headphones and had to answer questions. Show me the picture of the girl watching a cow, the program asked, providing a number of illustrations to choose from. Then, Show me the picture of a girl washing a cow. Emily used a mouse to indicate her choice. Over time, her ability to tell the difference between the words and to better understand what was being said to her improved.
At Alicia’s suggestion, she also used Interactive Metronome, designed to train Emily’s body and brain to work together better. As I had come to understand, autism manifests in a number of ways, including the speech and language difficulties we were currently addressing, as well as the behavioral issues we’d previously addressed through the behavior modification. There were also body control challenges, manifested in an autistic person as an unsteady or uneven gait, or in an imbalanced walk in which the person may not swing their arms at all, or may do so with off-beat timing—not the smooth right-foot/left-arm, balanced walk most of us exhibit. As I read up on the subject, I learned that these body control issues were evidence of a blip with Emily’s neurotiming. To help correct this, an actual metronome was utilized. Emily clapped her hands or tapped her foot to a beat, working to get better at matching various pulses over repeated sessions. The idea was to stimulate the growth of connections in her brain to help it work more efficiently and to be more organized, much like she was doing with Gene Hurwin. Doing so, we’d hoped, would improve her focus, her ability to decipher information. It might further aid her ability to read, the ease of her movements, and help her to control her impulsive or aggressive behaviors.
Each of the suggested therapies came with a hefty price tag, but every time Alicia approached us with a new possibility, we said yes. If there was some chance that the proposed therapy might help, we wanted it. Some worked better than others. We said yes not only because a proffered therapy might change something for Emily, but also because for the hour or so of a given intervention, someone else was in charge of Emily. Tom and I got a brief respite.
Alicia is a very determined person. That was clear from the time I met her. There was a sense that she understood me and wanted to help me get as much expression as she knew was equal to all that I had in my mind. I don’t know how much my mom told Alicia before we met, but she understood me. Her goal was to help me express at least my basic wants and needs. But she also knew that, even at my young age, there was more to me. She recognized my intelligence and individuality and respected it.
For instance, if she wanted to know which book I wanted to read, she didn’t just settle on a generic “book.” She asked me to be specific. She wanted me to be specific with colors and details and desires; she knew I had it in me.
In working on my verbal expression and practicing articulation, we’d exchange cards with pictures. She thought maybe I was unable to hear the precise sounds of words correctly, but usually I could.
Other times, she’d say a word and want me to produce the same sound. She’d show me images of the mouth and where your tongue should go, or how your teeth should be positioned and she would do things with her hand to show or help produce a sound—it looked like sign language but was not.
I felt frustrated by the pictures of the mouth and teeth because I couldn’t make mine work that way. I believe she knew that I knew the differences in meaning between two words, like washing and watching. I could say them both out loud, and in my mind, they were pronounced correctly. But to the listener—to Alicia—it sounded as if they were both the same. It was a source of frustration. I was attempting different words and not succeeding. I was not pleasing her with the outcome.
Many of the interactions, though, I did enjoy. For example, there was a game or practice in which I would be asked to hand the card to her with whatever color was asked. When I got it right, I enjoyed to see that, based on her reaction. I had done it right! And if I was wrong, she would giggle and say “Try again.”
Usually, I enjoyed being at her office. Sometimes it was overwhelming because I was accustomed a quieter setting, so everyone being there particularly on Saturdays was hard at first, but I enjoyed watching the other kids and joining in as I was able to.
I was glad the behaviorists had stopped coming to our house. That was a relief. When I went to Alicia’s, my home remained my home. I didn’t like having them all in the house and was sick of the work they were making me do. I felt that I’d made all the progress I was going to.
8
I was bored with the classes in school. I think I was fed up a lot during that time. I had a lot of feelings sometimes, and overwhelming amount of emotions with no way to express them. There was a lot more extreme behavior on my part then. Meltdowns. I was in my head a lot. I can see now that if I’d had the ability to type or to let others know what was going on inside me, it would have helped. But I didn’t. I felt tangled up inside.
The younger school years were challenging at times, but also good. Can you imagine the raging energy of kids all in one place with no awareness for people’s sensitivities and the way it can affect someone like me? Also, there were times when there was too little input, people weren’t explaining to me what was going on and it was sometimes confusing.
A tutor once said to me that working with me was like training a dog to write a novel. It’s hard to believe but it’s true. That tutor wanted to get another client and hated working with me. She was part of the school’s tutoring service. She told this to a coworker with me right there. I bet she thought I couldn’t understand. I got so angry. I began to stim like crazy. I mean screaming and drooling, the works. I wanted her gone and to look bad in front of her peers and boss. I think it worked. That really made my blood boil. Because she acted like I was subhuman.
There’s another very powerful memory for me from when I was thirteen. The school special education teacher was testing my intelligence to see where to place me. He was determined that I just didn’t have the capability to be in any kind of school setting. That’s so vivid for me because even at the time I felt it was bullshit. But it really hurt so bad. I cried inside because it was like a death sentence. To feel that I was condemned to no education, to no advancement. I never thought I’d have another chance.
But honestly, (for the most part) I have always been treated well. I think mostly during the younger years I felt less included, but no one was mean to me. I went to other kids’ birthday parties and did social things. One girl in middle school had a party at her house. I went. I am an observer more than a partaker and like to see everyone, so that’s what I did there, mostly just watched the other kids. A pinata was there. I took a swing at it, but it was not my thing. I always or almost always am content to just watch and observe that way.
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