Stop me if you’ve heard this one: “Person gets amazing results by doing (place the latest fad here)!” The Internet is an incredible tool, but it is also bringing back many of the crazy cures that came and went before the Internet. I know that if I mention any of them in this post I will get an email from someone who tried that specific drug or exercise regimen and swears by it, so I will stay away from naming names. Suffice it to say, I sympathize with the longing for a cure that many parents feel. That quest leads to thousands of advertisements, millions of dollars invested in new research, and many, many promises of medical miracles that confront us on a daily basis. One of the best expressions of this longing for a cure is the movie "Lorenzo’s Oil" from 1992. In the film, a couple’s young son has a rare disease that has no cure. It is so rare that no one is even working on it, so the dad sets out to figure it out and finds a solution. Man how I wish I could do that! It has always broken my heat to see my children struggle with everyday learning and childhood trials; how much more so when we discuss disability. I want healing; I want some potion that makes it all go away.
That ache has caused me to chase some shooting stars over the years. Early on we joined a group of parents who pooled their resources to pay for therapists from Hungary to come and work with our children for the summer. The program was getting amazing results with children in their home country. The problem was that the children in Hungary would come to live in the school and have this therapy every day until they were adults. How did we expect a one month program to accomplish what was taking a lifetime? I don’t want to make it out like it was a total loss. What was evident was that these therapists demanded way more from our children than we felt we could ever ask of them. We did learn some things, but it was not a cure.
We also spent money on another product backed by doctors. The first clue should have been that it was a multilevel marketing scheme; what was worse was that it was sold by people in our church. Fantastic, glossy brochures telling of people who had seen unbelievable improvement should have been another clue.
The same story happens with these would-be cures over and over again. The slick company grows quickly; the top people pocket a bunch of money until the company gets sued. They settle for pennies on the dollar or declare bankruptcy. These top dogs then walk away enriched, and often start another company doing the very same thing. These people, unfortunately, are scumbags.
Why do these shady folks keep on making millions selling the same story? Because they know we ache, they know that many times we don’t use our brains when it comes to our children. They know that when our heart is hurting there is no length to which we will not go if it means our children don’t have to suffer.
The problem is that, as with the years of pain and struggle depicted in " Lorenzo’s Oil", finding a cure, or even establishing the right set of medications or therapies to help our children stabilize and make progress, is complicated. It can take trial and error for us and our doctors to get to the right mix of things that make a difference. Hearing that someone else is having amazing results should make us both curious and skeptical at the same time.
Our desire for a better life for our children can’t obscure the need for good quality investigation and discernment. We can, and should, use our energy to find the best solutions available. Nevertheless, this has to be done with our minds fully engaged, and our expectations properly measured, to make sure that our efforts and resources aren’t wasted.
