I Am in Here (5 page)

This is the story of all autism parents: caught between two worlds, one of which always feels as though it's about to crumble beneath our feet at any moment. Just like the World Trade Center, what you think is indestructible can turn out to be unexpectedly vulnerable under enormous pressure. Life is perpetually unstable and has the potential to take you down a deep, dark hole. I watched my beautiful, healthy child slip away from me into the chaos of autism, and I struggle every day not to be sucked down that hole along with her.

As much as I'm keenly aware of being caught between two worlds, I'm aware that children with autism are caught between two worlds as well. Elizabeth is desperately trying to navigate the shoals of adolescence and make her way through the mainstream school system like any other child. Yet she is also locked into a silent world that isolates her from her peers.

Although my stress and the conflict between my worlds cannot compare to Elizabeth's, I have difficulty finding times and places to rest. My mom has often asked me, “Ginnie, you have so much pressure at home. Why don't you find work that is less stressful?” I have pondered this many times in the past decade, and the best that I can come up with is that somehow the two stresses balance each other. Either that, or I'm a stress junkie.

It is true that raising kids with autism is stressful on a minute-by-minute basis and that running a venture capital fund focusing on cash-starved, early-stage companies often teetering on the edge of bankruptcy is high up on the stress curve as well. Somehow, though, the lessons that I have learned in one part of my life have helped me to carry on in the other.

The intensity and pressure of a Wall Street career have, to some extent, prepared me for the challenges of autism. For the past twenty years I've worked as a venture capitalist and board member of companies large and small. The smaller the company, the wilder the ride. Industry statistics show that two out of ten start-ups succeed, three out of ten have limited success, and half of the companies fail. The same can be said of our autism interventions.

What keeps me going in both my Wall Street and autism worlds? Pressure and hope. The pressure drives my plans and actions. My hope and faith sustain my spirit.

The hope for entrepreneurs is that they will find the magical mix of smarts, luck, and hard work required to build a wildly successful company. The hope for Elizabeth is that she will be healed by God or medical science, or a combination of the two, aided by the force of her strong will. The hope of ultimate success keeps me going in both worlds.

During my years in the venture capital business, I have been invited to speak with groups of entrepreneurs hungry to know how best to raise money for their companies. In order to spice things up a bit, I usually conclude my presentation with “The 24 ‘Show Me's.'” My mentor in the venture capital business originated the list as “The 12 ‘Show Me's,'” and over time it has grown. These “Show Me's” are the qualities that an early-stage company needs to demonstrate before I will invest. As I reflect on the “Show Me's,” I realize they represent not only a checklist for making investments but also a set of organizing principles for managing the chaos of autism. I'd like to share a few of them with you—let the slideshow begin.

“Show Me” Focus and Flexibility

In both venture capital and autism, the ultimate goals are clear: “going public” for the company and “recovery” for the child. Without losing sight of their ultimate objectives, successful teams stay focused on the day-to-day execution of their detailed plans. The best business plans and medical plans constantly change based on new information. Successful parents and entrepreneurs show the flexibility to employ new tactics and strategies when the current ones are not showing results.

Children with autism have trouble with flexibility, making changes in simple routines traumatic. For example, as a toddler, Elizabeth would get quite upset if we even took a different route to the supermarket. Elizabeth likes routine and dislikes the pressure of being pulled in many directions.

  
So Much to Do
  

There was a girl

Who spent her life in a whirl

Going here and there

With no time to spare.

She missed the times

When the bells would chime.

Anxious to fill her day

She did not see the flower blooming

Or the airplane zooming.

She missed some of the best of life

In her strife

To do it all.

Kids today are kept so busy with activities away from home or at daycare centers. I think spending time with family, nature, and friends is very important. I like to enjoy everything that is happening and not be rushed
.

“Show Me” a Committed Team

Battling autism and building companies both require a team effort. No entrepreneur builds a company by himself, and no parent recovers a child alone.

Our first stop in putting together a team to treat the children was the Autism Research Institute (ARI). With the slogan “Autism is treatable,” they had the approach I was looking for after Yale's declaration that nothing could be done medically. In those early days of despair, I eagerly read ARI's research showing the effectiveness of special diets and supplements in recovering children. It gave me hope and a place to focus my energies.

Finding an experienced, ARI-trained doctor to guide the children's treatment was the critical first step for recruiting the rest of the team. I wanted a doctor who saw parents as partners. Today our committed team includes doctors, school administrators, teachers, aides, therapists, clergy, family, and friends from across the country. We have seen specialists in New York, New Jersey, Pennsylvania, Texas, California, Arizona, New Mexico, Florida, Washington, Wisconsin, Massachusetts, Maryland, and probably some places I have forgotten. Like companies whose workers are spread across the country, we have a virtually connected team working to heal the children.

A key team member often forgotten is the educational aide. Terri has been by Elizabeth's side since she was three years old.
Most parents are astounded when I tell them this and ask how we have made it work in an educational system that often assigns multiple aides in a single year.

The answer is complex and lies in finding and nurturing a relationship with the right person. We looked for someone who thought being an aide was more than just a job. Terri wanted to make a difference in a child's life. It also required a pragmatic and flexible school administration.

For our part, we try to show Terri our appreciation for her extra efforts. She has come with us to Texas to be trained by Soma. We have helped her find ways to supplement her income. Terri comes to our home every day after school to do homework with Elizabeth and works with her in the summer. She loves Elizabeth and knows that she is making a difference in her life.

We have been blessed to have located two such angels for our children. Just as Terri “fits with” Elizabeth, our son Charles fits with his educational aide, Tammy. Charles's needs are very different from Elizabeth's, and Tammy has been a second mom to him for more than seven years. She knows just when to snap her fingers to get Charles refocused on the teacher. Tammy models the social interactions that are so difficult for him. She comes to our house every day after school to help him organize his homework. Tammy loves Charles and knows that she is making a difference in his life.

Our children are successfully mainstreamed in public school because of the relentless commitment of these two women.

  
Special Helpers
  

You are my fortress

In times of trouble,

In times of storms

You are there to guide me.

I hope you will never leave.

What would I do? I can't conceive.

We are a team, the two of us.

You are someone who I really trust.

Thank you for all you do for me.

How grateful I am, I hope you see.

One day I'll care for you

As you have cared for me.

On this you can depend.

Aides help people like me be able to go places we were not able to go before, like public schools.

“Show Me” a Deep Understanding of Customer/Child Needs

A company has a much better chance of my investment fund writing a check if it has some satisfied customers. With a few calls, I can better understand customer needs and learn why they bought the company's product. Was it the cheapest product on the market? The only one that had a certain feature? My most successful companies have been downright obsessed with customer satisfaction.

Autism moms are obsessed with understanding the unique needs of their kids. For years a group of us posted our questions and answers on an invitation-only site aptly called “Dr. Moms.” The site was run by the top Dr. Mom, Judy, who works day and night trying to understand the needs of her handsome son, Alex, who is severely affected by autism.

Judy has searched the world for answers to the dietary and immune issues that are common among those diagnosed with autism. After success with Alex, she convinced many of us to try the Specific Carbohydrate Diet. The elimination of refined sugar, grains, and starch helps relieve the painful intestinal distress suffered by many of our kids. It worked well for Elizabeth.

Another common trait associated with autism is an overly active immune system that never shuts down, not even when its job of fighting off a cold or flu is done. It is always hyped up in full fighting mode, so much so that the immune system begins attacking itself, causing inflammation from the intestines to the brain. This constant internal fire is thought by medical experts to cause some of the odd “autistic behaviors.”

After studying the research and discussing it with her doctor, Judy decided to try a controversial and counterintuitive therapy of introducing porcine whipworms, a tiny worm commonly found in pigs, into her son's intestine. Before you retch at the thought, hear the science.

For millions of years, humans lived symbiotically with parasites in our intestines. These parasites have been stamped out in most parts of the Western world because, in some circumstances, they cause anemia and protein deficiency. But researchers have now discovered that in areas of Africa and Asia where the worms still live within the population, there are virtually no cases of
asthma, allergies, and other inflammatory disorders. Autism is also unknown there.

Scientists believe these worms help regulate the immune system to protect against these conditions. Leaping forward, some doctors are now researching and treating patients with these “good” parasites for conditions such as Crohn's disease, colitis, multiple sclerosis, asthma, allergies, and—
drum roll, please
—autism.

Relentless Judy found a way to get the pig whipworms from a German company that imported them from Thailand. The worms worked wonders for Alex, but replacing them every two weeks was prohibitively expensive, so Judy struck out to find an affordable alternative. She did additional research and found that hookworms can survive in the human body for decades and produce many of the same benefits.

Unfortunately, hookworms are not available in the United States, but that didn't stop Judy. She flew across the country with her parents, two sons, and family physician and drove in the middle of the night to Tijuana, Mexico, to get these worms for her family. The drug wars were raging, and they heard gunfire in the distance as they tried to find their destination. Just as they were about to turn back for San Diego, Judy saw the hotel's neon sign.

Eight weeks after adding the hookworms, Alex demonstrated his first academic skill ever. Despite the best efforts of a decade of special education, Alex had never been able to identify a shape or a letter. On that beautiful morning, his teacher came downstairs and showed Judy a piece of paper with nouns written in one column and verbs in the other. For the first time, Alex showed the world he could read by correctly sorting words. Two and a half years later, with the hookworms doing their magic, he is
progressing through Hooked on Phonics at the age of seventeen. Alex is doubly hooked.

Lesson 1: It's never too late for our children.

Lesson 2: Educational and medical interventions go hand in hand.

Judy's relentless quest for healing worms qualifies her as a How Person. Through her work as a nutritionist, she looks for innovative ways to help children with autism every day. I know because we email each other ideas, articles, or research papers virtually every day. I think we took off Yom Kippur and Christmas this year.

“Show Me” a Team That Can Perform under Stress

Entrepreneurial management teams and autism moms share a life that has a high level of stress. The key question for making an investment in a company is whether the management team has figured out ways to effectively deal with the pressure and move their companies forward.

I witnessed firsthand the management team at Edison Schools perform with pressures coming from every direction. While I was on the board of directors, the team built the largest independent company managing public schools in the United States, running 120 schools in more than twenty states. In most cases, public school districts contracted with Edison Schools when student performance was at rock bottom. Edison's management team performed well, in terms of student achievement, under tremendous pressure from teachers unions, politicians, and Wall Street.

For many children with autism, stress comes from subtle sensory issues such as sights, sounds, and smells. Years ago,
Elizabeth told us about the stress she felt when she saw certain colors and how she found a way to manage that stress.