I Am in Here (8 page)

Unable to speak, Dillon was considered “low functioning” by his school district. When he was eight, his parents ignored the experts and bought a communication device. The first thing he typed was “Get me out of special ed. I'm not retarded.”

I took in her son's first words with both celebration and heartache. He was finally able to show his intelligence, but to think how he suffered in silence all those years. Since that time Dillon has graduated from public high school, and after fifteen years of silence, he is starting to speak.

Elizabeth and Dillon are not alone. Over the years we have met numerous children with autism who are intelligent. In fact, it is my experience that most children with autism are
uniquely
intelligent. If only the world would assume intelligence and look beyond the odd behaviors.

Elizabeth video conferences with a nonverbal girl named Sydney in Southern California. They type back and forth about poetry and nature. Emma is another nonverbal girlfriend Elizabeth met at Soma's camps. Emma has produced a video that begins, “Me and God hoping to beat autism soon. . . . Autism is what I struggle with, but there is so much more to me than that.” Mitch is also one of Soma's students, and at twelve years old, he is nonverbal yet gifted at analyzing and managing a stock portfolio.

Soma has worked with hundreds of adults and children with autism and feels strongly that all have the capacity to learn. Her thesis is proven as each person begins to communicate with a letterboard. Soma has taught many of her students to write poetry. This is one of the first poems Elizabeth wrote with Soma, and it remains one of my favorites.

  
Clowns
  

Clowns are a peculiar sort.

Oh, to what they won't resort!

To make us laugh is their mission.

What a silly tradition!

I am afraid of clowns. I don't like masks. I can't see the real person. I can tell a lot about a person by their features, if they are kind. I cannot see through a mask or makeup
.

Every school day is a new adventure and a mystery to solve with our kids. About midway through first grade, we were frustrated by Elizabeth's performance on the monthly reading tests, as we
knew that they were well within her abilities. During one of the tests, when Elizabeth was only getting about 70 percent correct, there was a loud noise in the classroom that caused a wave of commotion. Her teacher, Cathy, shut off the lights to get the kids' attention and to calm them down. By some stroke of luck or divine intervention, it was a sunny day, and she left the lights off. From that point on, Elizabeth got all the answers correct. When Terri asked her what happened, she typed, “
The lights were making noise and putting a glare on the paper so I couldn't concentrate
.”

The next day, the school replaced the light bulbs in her classroom, which reduced the noise, and the teacher kept them off as much as possible for the rest of the school year.

  
Long Days
  

Sit, sit, sit.

Listen, listen, listen.

Bit by bit

I start to simmer.

Little by little

Everything gets dimmer.

Then I blow

And no one knows

What led me to this

Unacceptable behavior

But me.

And now you see.

School is often hard and long for me. I just have to let off some steam sometimes.

At the end of first grade, I asked if Elizabeth could be tested for SEEK, the school's gifted program. Given our history with traditional testing, it was painful for me to learn she would be given an IQ test. In May 2000, when Elizabeth was first diagnosed at Yale, they gave her an IQ test without my knowledge. She was two and a half years old and nonverbal. It is hard to imagine that such a test could determine anything.

I didn't have that perspective back then when I read the Yale report and the IQ number 69 screamed from the page, sentencing Elizabeth with the label “mental retardation.” I cried and cried over that report.

Now they were going to do another IQ test. What would it say? Did I care? Did the number have any meaning? I had thrown the other number out a long time ago and assumed intelligence. What would happen if it were 69 again?

Don't get me wrong. I know that an IQ score is only one way to measure a person's intelligence and is by no means a measure of a child's worth. Intelligence is only one aspect of who we are, and it's not even close to the most important. On top of that, many people argue that IQ tests are too narrow or inaccurate to begin with. I know that if Elizabeth's IQ were 69, I wouldn't love her any less than if it were 169.

But I also knew the power of perception. I knew all too well what has been termed “the soft bigotry of low expectations.” I knew that, fairly or not, the wrong label could severely limit the degree to which the educational system would be willing to invest in Elizabeth.

Most importantly, however, I knew the many challenges Elizabeth was going to face. My greatest worry was that a deeply flawed evaluation process would lead to a wrong diagnosis and set the course of a treatment regimen, both educationally and
medically, that would overlook her greatest strengths and treat a nonexistent condition.

By the end of first grade, when this test was to be administered, Elizabeth was still inconsistent with typing on the letterboard. Some days she typed quite well, and other days her digital choreography didn't seem to make sense. She was dealing with a variety of sensory issues and biomedical interventions which, at times, interfered with her academic performance.

Would they test her on a good day or a bad day? Although I didn't want to put any worth in the number, I was quite apprehensive sending her off to school that morning. I wanted this test to prove wrong both the Yale experts and the Child Study Team.

I didn't say anything about the test to Elizabeth, but I know that she could sense something different that morning. Terri and I had talked about the testing environment over and over again. We needed her to take it in a quiet room that had a window so that we could have the lights off. As always, Terri would sit on her right side. The teacher would stand behind her and on her left so she wouldn't be a visual distraction. We would have two bags of her favorite gluten-free pretzels for her to munch on and a bottle of water. Every detail was reviewed over and over again, as if we were planning a bank heist.

The test was designed so that increasingly difficult questions were asked until ten were answered incorrectly. Each day, Elizabeth would be tested for up to one hour. After the first day, Elizabeth was going strong with no incorrect answers. What a relief. After the second day, she was answering middle school questions and had only one wrong. By the third day, she was into high school questions. They ran out of questions before she got ten wrong.

The SEEK teacher was delighted to tell me that her calculated score was 164—well into the genius range. I cried and cried.

Although I had told myself that this number meant nothing, just like the number 69 had meant nothing, I was elated. Elizabeth had dazzled them with her answers. The SEEK teacher couldn't give me the test, but she shared a few answers after I begged her.

One early question was “Who wrote ‘The Star-Spangled Banner'?” to which she correctly replied, “
Francis Scott Key
.” That is something grammar school kids learn, but the follow-up question was obscure: “What was his occupation?” Without missing a beat, Elizabeth typed, “
Lawyer
.”

One question that I still laugh over is, “What is Social Security?” Elizabeth's answer: “
So old people have money
.” How does she know these things? She told us that she is always listening and that she heard a report on Social Security on CNN when we were sitting in an airport on one of our trips to visit Soma.

Elizabeth hears, and apparently reads, a lot of news in our house. Among the first letterboard questions she asked were, “
What is FEMA?
” and “
Who is Hamas?
” Unbeknownst to us, she had been getting her news by reading the CNN ticker on the family room television.

I still get tears in my eyes when I think back to Elizabeth's courageous first-grade teacher, Cathy. She was not deterred by the Child Study Team's recommendation and welcomed the challenge of bringing Elizabeth into her mainstream classroom. She told me that she believed God had sent Elizabeth to her as a blessing. While Elizabeth was Cathy's blessing, Cathy was ours.

One morning when Elizabeth was in second grade, I was helping her brush her teeth when she started to cry. (Because of her weak motor skills, Elizabeth needs assistance to brush her teeth, tie her shoes, button her coat, or write legibly, despite years of occupational therapy.) After school, Terri and I asked her why she was upset in the morning. She wrote, “
I was thinking about
the people in Iraq. They live in fear of death every day. I want the war to stop and people to get along
.” Then she wrote this poem:

  
Peace
  

If we all try to get along the world would be a happy place.

Everyone could have their space.

War could disappear without a trace.

That is my wish.

I do not believe violence is the answer in any conflict. People are different, but all people want to be treated fairly and shown respect. I believe war could be eliminated if people followed these rules
.

In second grade Elizabeth started to blossom using her letterboard. With it she was able to complete all of her school work and Corrie, her extraordinary teacher, took the initiative to use it with her, first with Terri's assistance and then independently. Corrie's efforts to communicate with Elizabeth directly were a key step in getting her integrated into the class. Corrie made sure that she was included in every activity. In the class play, Elizabeth held up her lines as a big sign. Corrie's enthusiasm was infectious, and the children embraced Elizabeth.

During this year I had a breakthrough of my own with Elizabeth: she wrote her first poem with me. Many parents experience frustration in trying to do the letterboard after seeing Soma do it so effortlessly. After school one day, Terri and I asked Elizabeth why she resists doing the letterboard with me. She typed, “
Mom
is for fun
.” Although it is hard to persist in the face of such logic, practice and perseverance are keys to success.

I have been able to make breakthroughs with Elizabeth by using fun as bait. Whenever possible, Elizabeth and I take a short retreat. Usually we don't go far, just to a hotel with a pool, so that I can give her a reward for her efforts with me. We work for an hour and then we take a swim in the pool. We work for an hour and then we go for a short hike. These are intense weekends, but they have produced many breakthroughs, including her first successes at writing words on a whiteboard and typing independently on a keyboard.

Elizabeth is strong willed, and we can only push her so far. She let us know this in no uncertain terms in this next poem where she describes her early resistance moving from the letterboard to an electronic keyboard:

  
Learning a New Device
  

I will do this when I am good and ready.

Not because you tell me.

So don't try to push this.

I'll just refuse it.

I don't like it, you see.

It's hard for me.

Just let it be.

When learning something new, I have a hard time. I need time to figure it out in my own way.

To help Elizabeth make progress working on her new device, we needed a big incentive, so I scoured the internet for a deal. A few weeks later, my mom, Elizabeth, and I packed up and went to St. Martin for five days. It was the dead of winter and we thought that the sunshine and French food would do us some good. The island also has a lush butterfly garden where we stayed for hours playing with the butterflies.

My magical moment with Elizabeth came when we were working on the little patio adjacent to our hotel room and she wrote this poem for me:

  
Timeless Waters
  

On an ocean cay

A nested note to yesterday.

Tea under the stars

Eyes stare everywhere.

I was intrigued by her hauntingly beautiful phrase “a nested note to yesterday.” When I asked her what “nested note” meant, she typed, “
Like a nest where a bird puts all its treasures, I have memories stored to remember at another time
.”

What joy to finally get her to write a poem for me! We needed to get away from the distractions of everyday life to make this breakthrough.

By third grade Elizabeth was hitting her stride. We made sure that she had a few girls in her class who had a close connection with her from second grade. Her teacher, Jennifer, helped us develop those friendships by carving out ten minutes here and there for Elizabeth to have “conversations” with them.

At this point Elizabeth was using a communication device called an AlphaSmart, which has a keyboard and small display. Her classmates loved typing in questions and having her answer them. We also made sure that Elizabeth had the chance to ask questions of them.