On our way
|White-capped Mt. Shasta in the far distance.|
It seems like many of the parents I've met in the special needs world go on at least one crazy, expensive trip to a far-away clinic that promises results.
We are on such a journey right now.
As I write this we are crossing the border into California on our way to the Anat Baniel Method Center in San Rafael, in the Bay Area. Because we have not one but two babies, this 10-hour drive is taking two days each direction, driving at night so the twins will (mostly) sleep instead of (mostly) crying.
(Added later after we arrived at our hotel room: This tactic was not entirely successful. An hour into the second leg of our journey, Malachi threw up Pediasure everywhere necessitating a hasty and totally gross pitstop. Four hours later, we arrived at my sister-in-law's house in Northern California where the boys woke up thoroughly and completely. I fed and played with them until 3:30 a.m. before I could convince them it was now "nap" time.)
Once we get there, we have rented a hotel room a few blocks away from the ABM center, where we have pre-paid for four days of twice daily lessons of 45 minutes each. Each of those lessons costs around $200, which insurance doesn't cover at all because this unproven method doesn't even have the credentials to be called a therapy.
All told, the trip will cost our single-income family more than $3,000 at a time when we are scraping the bottom of our savings and our minivan just died.
Needless to say, we are hoping for some real results for that kind of scratch.
All of our other therapies — including aquatherapy at more than $400 an hour — are mostly paid by insurance or the state. It definitely makes you reevaluate what sort of results are "good enough" when you personally are throwing down the cost of a car for a treatment program.
So what will be "good enough"? What will it take for us to consider this trip a success?
I don't know yet. I guess I'm hoping for one of The Important Milestones, like rolling from back to front. The irony, though, is that this particular method says we have to keep our goals "flexible." (The cynic in me, of course, says this is code for "unattainable.")
But then, here's the clincher: what if it does work? Will all of our future "vacations" be to San Rafael?
One family I met a few months ago had gone all over the world and done almost every alternative and conventional therapy to teach their teenage son to walk, with mixed but ultimately temporary results. While I listened to the mom, I couldn't help but wonder how much money they had spent on all those treatments and how much pressure her son felt for never getting well enough, never being good enough.
On the one hand, you feel as a parent of a special needs kid that nothing else can be more important than providing them the most opportunity to improve as possible. That's why my husband and I did make the decision to spend our paltry life savings on these treatments — because what is a trip to Hawaii when your son's very future is on the line? What sacrifice of leisure and comfort would not be worth erasing the damage from that damned brain bleed?
But on the other hand, you know that there is a line. Malachi has many facets that do not include his disability, so turning "curing" him into the focus of our lives will ultimately cheapen his existence, not enrich it.
So where do we find that line, and how do we know when we've crossed it? I don't know. I'll let you know if I find it as I drive past mile after mile of golden California hills.