Thursday, April 30, 2015

Which hope is false? Which is real?

Yesterday I read a fascinating feature in WIRED called An Alternative-Medicine Believer’s Journey Back to Science.

It chronicles the story of Jim and Louise Laidler—two American doctors whose two sons were diagnosed with autism. For a number of years they threw themselves into pursuing alternative therapies for their boys: supplements, a gluten- and casein-free diet and IV infusions of secretin. Jim became an expert and speaker on chelation, a controversial process meant to rid the body of heavy metals caused by vaccines and pollutants.

The Laidlers eventually acknowledged that the therapies hadn’t made any difference and stopped them. The WIRED piece talks about how unscientific treatments with wild claims create false hope in parents that becomes addictive. “Instead of thinking about what to do when there are no options for a cure, it’s easier…to never run out of options.”

While one of their sons improved without alternative treatments, the other had more significant disabilities which meant he probably wouldn’t live independently. The Laidlers had to face some hard truths about how to ensure his wellbeing after they died. Had they held on to hopes for an alternative cure, “...there would have been no time, no money, and no willingness to think long-term.”

Over many years the Laidlers planned to buy a farm and to join with other families of youth with autism to create a shared home. “For the Laidlers, the real alternative was to stop believing in miracles—and start planning for the future,” writes the author of the WIRED piece. Jim Laidler describes this planning as “a better kind of happiness” because it was real.

This piece resonates with me because our son is about to leave the school system and we find ourselves without a well-thought out plan. There are always so many balls to juggle on a daily basis that it's easy for parents to put off planning, especially when there doesn't seem to be an obvious solution.

What have you learned about hope while raising your child? What have you learned about planning for the future?


There are those who believe that hope by its very definition cannot be false. There is never a guarantee and maybe not even a chance that a hope comes true. It's something there to sustain people during the journey, not an end.

I've known families who have tried all kinds of alternative treatments and for some, an improvement in quality of life and even function was achieved. With some conditions, a child can "catch up" and end up being self sufficient, maybe regardless of the therapies, diets, supplements, activities. But what the parents and families do in those venues are often what give them sustenance to dealing with their every day lives.

As with anything, to put ones eggs all in one basket is not wise. To ignore the child and condition and just bank away the money, not embrace and try for improvements is not a good way to go most of time, any more than banking on a cure. Striking the balance is important.

It's always been my quest, my questions about what happens to those who cannot support themselves, to which I have been seeking answers, alternatives. While I am alive and able, I can care and support, The resources are not likely to last another generation without someone caring and watching over both the person needing support, and finding an infrastructure to keep the support is a challenge. My one friend had her younger sister who made her life work dealing with those who need support, and felt secure in that she was 20 years younger and could step in to care for her DS son (nephew to the sister). It was a tremendous blow that she died an untimely death, leaving a gap, but a reality check that this can happen to anyone and that some system, not just a person or two, has to be put into place. And trust in such things is difficult to justify. Enterprises go bankrupt, fall apart, and if your child was in one of them, what then happens? That is the most difficult thing to face when one has a charge who can not be self sufficient. I've found no satisfactory answers.