Parents' RULE

The squeaky wheel gets the grease.

The parents are proving to be more accurate in terms of evaluation and selecting therapies for their children. Almost every parent I talked to at the breaks, lunches, and sessions said they definitely got the most practical help and best ideas from other parents. This was from message boards and support groups mainly (I asked). They read, they searched the internet, they posted, they replied, they researched, and, a very interesting point here, THEY SQUEAKED. Moms and dads (mostly moms) said they had to:

- argue and push and squeak with the schools
- badger and fuss and squeak with the manufacturers' of supplements, foods and other products
- whine and complain and squeak with the therapists (OTs, speech, ABA, etc)
- pester and demand and squeak with their doctors (DAN doctors, pediatricians, neurologists, dentists, etc.)
- squeak, squeak, SQUEAK!

And this is how they got results. Most parents didn't hide that they were sick and tired of it, but this is what was required to assist their kids, relatives, and themselves. A couple people said they found a gem of a doctor who would work with them – and the rest of us would be so envious. [I was fortunate to have a wonderful neurologist until she retired.] Almost every parent/adult to the man related all the stupid stuff they had been told over the years, and the runaround they got, and the walls they had to bust through in trying to find appropriate treatments.

Several companies [more than 6] of commercial supplements, lab testing, and therapies admitted they changed their focus abruptly based on parent feedback (enzymes were one of these). Of course, this is basic business and marketing – supply and demand. So what I got out of it is, parents…..SQUEAK, and keep squeaking and squeaking. Squeak to the supplement companies and vendors, squeak to the therapists, squeak to the researchers, squeak to everyone. Then research it all for yourself. A couple companies said they did in fact sit up and take notice when parents started flooding them with emails and phone calls and pushing back and demanding answers, not just passively believing all the marketing, or the idea that "we know best because we are the experts and you are the lowly unknowledgeable parent." [My paraphrase.]

Dr. Holmes said the effective stuff, including changes in treatments and public policies (vaccines), are driven and fueled by BAMs – Bunch of Angry Moms! Along with the angry dads and doctors. So if someone feels they are having to push a great deal, you are not imagining this or being overly fussy. Just think BAM.

Submitted by Karen from the autismandenzymes  Yahoo Group.