ExtraDAN: Parents' RULE

[Guest guest]

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.