I Am in Here (4 page)

“What causes you agony?” Soma asked.

Elizabeth gave her a sideways glance, filled with exasperation, and typed, “
I can't talk. I am stressed. I have no way to say that I am greatly bored with my day
.”

When Soma tried to commiserate with her by saying she is also often bored, Elizabeth banged her head with her hand and typed, “
But you talk
.”

Elizabeth's struggles to get the world to understand her didn't end when she learned to use the letterboard. Like many parents of special needs children, I set the goal to have her mainstreamed in our local public school. Based on my research, I made the pitch to our school district that early, intensive intervention would get her out of costly special education and mainstreamed by kindergarten or first grade. I asked them, “Would you rather pay a little more now or a lot more for special education until she is twenty-one?” I thank God they saw it my way.

For three years, from the ages of three through five, Elizabeth underwent an intensive program based on the theory of Applied
Behavioral Analysis (ABA) in our home. Therapists paid by our school district implemented the program, teaching Elizabeth basic skills like identifying colors and objects. They taught her in very small increments, with rewards for each accomplishment.

Like most treatments for autism, ABA is controversial. On the one side, there are studies going back thirty-plus years that show a respectable rate of children “recovering,” most commonly defined as losing the diagnosis of autism, with early, intensive ABA. On the other side, the critics decry it as inhumane. To them, the process mimics dog training because children are usually given a treat for each successful trial. We ultimately selected ABA because of the concrete results documented in numerous studies showing children mainstreamed in school, even though the process wasn't always pretty.

Our first challenge in putting together our home-based program was getting one of New Jersey's world-renowned ABA providers to come to a rural area to coordinate our program in what they call “outreach services.” Frantically, I called the offices of the three Yale-recommended programs virtually every day and pleaded for them to find us a coordinator who would supervise our therapists. Trying to bring some levity to a grave situation, I quipped that we had a special two-for-one deal for them: Elizabeth and her brother, Charles, were both diagnosed with autism. It would be so efficient to coordinate two children under the same roof. Really going out on a limb, I promised to recruit all of the therapists, since they had none where we lived.

When Douglass College (part of Rutgers University) called with the glorious news that they had found a coordinator, I was overjoyed and overwhelmed. I needed to find therapists fast. So I took my cue from Willie Sutton, who responded when asked why he robbed banks, “because that's where the money is.” I
started by recruiting the best aides and teachers from our public schools, asking them to extend their days and teach our children after school. One excellent therapist led to another, and we were soon in the business of ABA.

During Elizabeth's preschool years, our house was a three-ring circus of behavioral, speech, and occupational therapists coming and going from eight in the morning to five in the evening. Elizabeth had three two-hour sessions with three different teachers each day. Every night I checked the binders filled with ABA data to see what progress she was making. Once a week the Douglass coordinator came to train the therapists and implement new lessons.

A full book could be written about our three years running an ABA program in our home. We had a dedicated team of therapists, led by Tina, our coordinator, who taught Elizabeth to focus and learn. Mostly, I tried to be head cheerleader, acknowledging and celebrating the lessons Elizabeth had mastered in each of our monthly team meetings over pizza. We've been eternally blessed by all who worked so hard and lovingly on our ABA team. They gave Elizabeth wings to fly.

  
Fly
  

I would like to fly

So very high

To be a bird soaring

When the rain is pouring.

I love rain and flying. I wonder how it would be to fly like a bird in the rain. I think it would be amazing.

When Elizabeth was five, we intended to enroll her in mainstream kindergarten, but our school district thought she should be put into its newly created autism class. Unfortunately, the new autism classroom teacher assumed that Elizabeth had acquired no knowledge from her intensive, in-home ABA program. She forced Elizabeth to revert to the earliest “touch your nose” and “look at me” lessons that she had done as a toddler. Elizabeth erupted in fits of anger and rage. This was a dark time.

I could barely keep myself under control at one of our weekly meetings at school: “Don't you think she's trying to tell you something by hitting herself in the face? Don't you think she's telling you that these infantile programs are an insult to her?”

Sadly, there were days when this teacher went further and took Elizabeth's letterboard and communication device away as a punishment for her behavior. When I discovered this, I reported it to the principal, explaining that it was the equivalent of putting duct tape over her mouth. Despite my best efforts, Elizabeth suffered that year, and it pains me now to think that I didn't do more to protect her. (A side note: this teacher left after only one year in our school district, and I've been told that she is no longer in education. Your children are safe.)

I will spare you the details of my struggle to make things right for Elizabeth that school year through my constant calls, emails, and meetings. Only two good things came out of it: one was that her longtime school aide, Terri, shielded her from the worst actions of the misguided teacher and became a trusted second mom. And the other blessing was that in our desperation to prove that Elizabeth was bright and capable, we found Soma.

That year we flew to Austin, Texas, four consecutive months for weeklong intensive “camps” with Soma, and Elizabeth learned how to use the letterboard.

We still visit Soma for intensive workshops to improve Elizabeth's ability to write out what is in her mind. And Terri has remained with Elizabeth, her faithful friend and aide in and out of the classroom. One lesson we've learned: cherish those who best serve the needs of your child. Elizabeth is acutely sensitive to the emotional well-being of those around her, especially Terri, as she reveals in this poem:

  
For Terri
  

Feel better, my friend

I am here for you.

Do not be sad

Do not cry

I plan to try

To make you happy.

That tumultuous first year in school included dozens of meetings up the school's chain of command and ultimately appeals to the district's school board. This was a complex matter: I had been an elected member of that school board since before Elizabeth was born. At these tension-filled meetings, I was required to wear two hats, one as a board member and one as a parent, literally changing chairs when I was advocating for Elizabeth.

At the end of that first year, I was not looking forward to facing the seven members of the school's Child Study Team to determine a plan for Elizabeth's next year of education. Elizabeth was now six years old, and the question of whether she was ready to be mainstreamed—put into a regular kindergarten class accompanied by an aide—became more urgent for me with each passing day.

After the awkward pleasantries and formalities, the head of the Child Study Team took an exasperated breath and said, “We are in unanimous agreement that Elizabeth is not ready for kindergarten. She should remain in the autism classroom next year.”

Given the report from her teacher specifying that sitting cross-legged was a kindergarten requirement that Elizabeth was sorely missing, I was not surprised by this institutional conclusion.

Slowly, I looked into each of their faces in turn and calmly said, “Yes, you are absolutely right. She's not ready for kindergarten.”

Then I drew in a deep breath and said, “She's ready for first grade.”

Jaws dropped, but I believed in my daughter and saw the progress she was making in communicating her intelligence and knowledge through her letterboard. I also knew Terri and an exceptional, loving first-grade teacher, Cathy, were both up for the challenge.

The following year, our team of three (parent, teacher, and aide), figured out how to integrate Elizabeth into a mainstream classroom without overwhelming her or disrupting the learning of her classmates. Don't misunderstand: it wasn't easy. Everything we did was scrutinized by the Child Study Team, but in the end we succeeded due to the dedication and perseverance of Elizabeth, Cathy, and Terri. We were on a mission together.

Over the years I've learned there are two types of teachers, perhaps driven by their personality as much as their professional history. One type will generally view special-needs children as problems to be endured. The other will see them as treasures waiting to be unearthed. To those teachers, the How teachers, who see the treasures and have the strength and courage to go digging, we parents are forever in debt.

  
Hidden Treasures
  

On another day

Far away

A boat did go

Where tomorrows begin

And days end.

Over the horizon

Stormy skies

A net each

To gather treasure.

I like looking out at the vast horizon of the ocean. It seems endless. I often wish I could go out on a boat and follow it to the end, looking for treasures along the way
.

Living in Two Worlds

Mom giving comfort in dark days

  
Live and Let Live
  

Am I on display?

Why do they look at me that way?

I want to say

I am okay.

Sometimes I do things you may wonder about.

Just let me be and don't try to figure it out.

(age 9)

I am happy in my body until someone makes me feel different. My gift to doctors would be putting myself at their disposal. They could become better educated and help people with autism
.

M
ost people remember where they were on September 11, 2001. The World Trade Center had been my stomping ground for eight years while I worked on Wall Street. The week before, I was on the thirty-first floor of the South Tower trying to raise money for my next venture capital fund. But on 9/11, I wasn't in New York. I was at home, on the phone with the director of a local nursery school, pleading with her to let Elizabeth into her program.

“She's nonverbal but very bright, and we have a very nice woman, an aide, who will come with her to make sure that everything goes smoothly.”

“Excuse me,” said the headmistress. “Someone just came into my office and said that there was some kind of emergency at the Twin Towers. Do you think that we should talk later?”

“Can we just finish this up quickly?” I asked. “Can she please, please join the class next week as a trial? I know that you will love her.”

I wasn't sure how well my assurance was received because during the call Elizabeth was crying so loudly as to be heard on both ends of the line. Actually, she had cried, screamed, and banged her head on our wood floors for much of the past three years. To top it off, most nights she was awake, laughing maniacally and jumping on her bed. I probably could have better dealt
with the crying during the day if my head wasn't splitting from the sleep deprivation.