Friday, November 1, 2013
From swimming to snake oil
Then yesterday I was told that she has resumed independent back-floating and now even kicks a bit without prompting. I stayed to watch, teared up and then raced home to bring my camera so I could share C.'s feats [see my photo above].
As always, whenever there is even the slightest progress we hunt for the cause. Changes in diet? In medications? In dosages? In para-medical therapies? In weather? In our moods? We are desperate to pinpoint something that we can duplicate, continue or even enhance.
Please, please don't let it be pure chance. Usually, I'm at a loss.
This time, though, it could be the addition of Valproic Acid and recent rises in dosage. I hope I'm not deluding myself and that advances will soon eventuate on dry land too.
A propos our hunt for a remedy, here is a cynical survey entitled "The 5 Scariest Autism 'Treatments'". Much of the criticism leveled here applies to parents of children with other severe disabilities who chase some of these and many other questionable "cures".
About her choice of title the writer says: "And I don't even mean that tongue-in-cheek for Halloween. I mean, these are dangerous in the 'can kill you or cause permanent harm' sense."
When C. was young we trekked from one alternative practitioner to the next. Any name that reached us via friend or foe was tested. After a few years of this relentless search, I sat down to do a tally: we had taken C. to 35 "quacks".
The "treatments" included craniosacral therapy, Osteopathy, Chinese acupuncture, Japanese acupuncture, reflexology, Reiki healing, shiatsu, numerous "magic" potions concocted by frighteningly dubious vendors and many more. Sometimes we paid the exorbitant fees, other times we were offered free "introductory" sessions and we stopped when those expired.
Had we given C. the number of sessions that were recommended by the practitioners and paid them full fees, we could easily have been bankrupted. The promises and claims they made were often outrageous. One "healer" explained while "working": "I am now reconnecting her neural cells."
Finally we regained our sanity. We realized that anecdotal reports of progress from alternative remedies related to the placebo effect.
How is that possible with severely brain damaged children? Well, I would posit that the placebo effect is actually on us. When we believe that improvement is imminent, our relationship with our children is altered. Our hope triggers more animated and intense involvement with them. And that delivers their new strides.
Admittedly, I haven't got sources for that take but doesn't it sound logical? I'd love to hear your views on the topic.
One popular alternative remedy that we've never tried, Hyperbaric Oxygen Therapy, has attracted flack from none other than the FDA. (It was on our "must try" list during our "alternative phase".) The comments on that site indicate that some parents are not easily convinced that a possible remedy is actually snake-oil.
Written by Frimet Roth