hard time when she bangs her head, even though she says it doesnât cause her pain.
âShow Meâ Fire in the Belly
Entrepreneurs and autism moms are among the most driven, passionate people I have ever met. We have a saying in the venture capital business: a successful entrepreneur must be willing to chew through a wall. I know many autism moms who have done that and more to help their kids.
One entrepreneur I had the honor of working with early in my career came to this country from the Czech Republic with three dollars in his pocket. He quickly got a job at a local supermarket and learned the secret of growing a business with its own working capital. In short, the business collected from itscustomers immediately and paid its vendors in thirty days. This entrepreneur bought a small deli and then a bigger store. When I met him, he had a twenty-million-dollar operation. With some venture capital from my firm, he grew the company to a one-billion-dollar enterprise. This man chewed through many walls.
Even this type of relentless dedication, though, can pale in comparison to that of the autism moms who chew through walls called Individualized Education Programs (IEPs) to get the services their children need. IEP meetings are held annually to determine the services necessary for a child with special needs. Although I have never had an unpleasant IEP meeting, many autism moms face daunting bureaucratic hurdles and even need to bring their lawyers with them in order to get appropriate services for their children.
Some of my closest friends are relentless autism moms whom I have never met face-to-face. We have met on the internet, creating our own virtual network of support. I know that I can email them at any hour with some panicked question and they will send it out on our network to get the answer. Mostly, we talk about poop. Healthy poop is a holy grail in autism land. Enough said.
âShow Meâ the Courage to Make Hard Decisions
The process of gathering data and making a decision with imperfect information is eerily similar in venture investments and autism treatments. In both cases, I look to balance risk and reward. Just as there is no risk-free investment, there is no risk-free treatment for a child. Almost every drug package insert includes warnings of complications as extreme as deafness, blindness, and death. These complications are extremely rare, but they do happen.
The decision to place a ten-million-dollar bet on a start-up company pales in comparison to making the decision to stick an experimental intravenous needle in Elizabethâs arm.
The autism journey is an emotional roller coaster of hard decisions. We hear about a promising new treatment and have to decide whether it is worth the risk. The data may say that it only helps a small percentage of children, but if it helps Elizabeth, thatâs all that matters.
After agonizing over a new treatment decision, my hopes soar. Sometimes the hope even reaches my subconscious, and I dream about Elizabeth speaking to me. We do the new treatment and we wait expectantly. Often the results are that nothing seems to happen. We did years of chelation, hyperbaric oxygen treatment, and vision therapy, all with no results.
After the hard decision to start a treatment comes the hard decision about stopping. If we did it for another month, would it help her? With my hopes dashed, I have a good cry, dust myself off, and search for the next promising treatment.
These entries from my journal tell of one roller coaster ride that was particularly painful:
February 2005:
One of our teachers came back from an autism conference excited by a presentation by a PhD who has treated more than 400 children and adults with autism using neurotherapy (NT). Her studies showed results ranging from good to unbelievable.
NT is the process of measuring the frequencies of brainwave activity at particular positions on the head and then training the brain to be in the