Shh...Mum is Thinking

Monday, June 05, 2006

Advice--The Supply is Exceeding the Demand

Advice is the only commodity on the market where the supply always exceeds the demand.

Goodness, my family is SO helpful. :-/

Checking my email first thing this morning, I found they’d sent me information about an NBC Dateline program about mercury and chelation, along with more curbie links from the good folks at NBC. What’s with NBC, anyway? Can’t a member of their board of directors have an autistic family member without dragging the entire nation through the quagmire of quack treatments? Sheesh!

“What’s wrong?” asked my husband when I groaned and plonked my forehead on the desk on opening the email.

I pointed, and he just sighed and shook his head.

“Oh, great. Don’t they ever give up?” he asked…and I felt the double frustration of stress from them and guilt that I’d now shared that stress with him. They’re not HIS family, why trouble him with it, right?

Last week they sent me links and information for Autism One (if you want a taste of the ‘curbie’ religion ABFH wrote about recently, this is a good starting point. Ugh, there’s a biomed husband-wife team on there that made my skin crawl, can we all say hallelujah?! They’re all revved up and ready for battle to defeat the autism monster that kidnapped their children, brothers and sisters. Sigh.) . A couple of weeks before that they sent me the link to the Autism Speaks video which p’d me off so badly I decided to take a stand and add my little pipsqueak voice to the other blogs out there.

Before that it was a couple of months of RDI, RDI, RDI; practically everyday I’d open my email and say “Ohmyfreakinggod it’s more RDI info.”

Last year was great fun--ABA and information about NAAR and CAN. Irlen (sp?) lenses. Vitamin A. Vitamin B shots. Now it looks like they’re excited about chelation.


It’s been like that for years…every few days I get an update on whatever new and improved autism treatments are out there. Sometimes they send books, mostly pop psychology. Occasionally it’s a link to something really bizarre, like hbot treatments. But most of it’s just annoying-- the same old stuff I’d researched years ago and discarded as impractical, unsubstantiated or just plain stupid. I’ve tried to explain what I’ve learned, why I’m really not excited to hear more, but it hasn’t made much of a dent in their enthusiasm for ‘new’ information.

I really shouldn’t be surprised. After all, these are the same folks who take a pill for every sneeze, every cough, every ache and pain and sadness that comes along in life. I don’t want to give the impression that I’m totally against medication or therapy, I’m NOT. But I figure sometimes a fever is there for a reason; if it’s not too high, let it run it’s course and do what it’s meant to do. Sometimes bad things happen and we feel sad, if the sadness isn’t too horrible or continuing too long, it can a healthy thing to simply feel it and let it resolve naturally. And sometimes a child melts down because he needs something done (or NOT done) for him, not because he’s in need of a nice shiny pill. I don’t want to throw medications and therapies willy-nilly at my child without looking to see if they’re really needed, might conflict with each other or have side effects that will hurt him years from now.

I’ve seen family members add medications to treat the side effects of other medications too many times. I’m sad and worried that it’s like that for them, but I know it wouldn’t help for me to criticise. I just wish they understood my lack of criticism doesn’t mean *I* want a ride on that merry go round, thanks anyway.

I also don’t think they’re getting that I find it deeply offensive on a completely different level: I find it insulting to myself, my husband and my son that they are so desperate to change what is natural to us.

I know they mean well, I really do…I know they just want to help. If I repeat that often enough, I just might start to feel less upset. I just wish that ‘meaning well’ included honouring our decisions and opinions, and if not celebrating our neurology, at least accepting it as valid.

I had hoped that my being calm about our situation, not getting bogged down in complaints, praising the positives of our lives along with explaining my stance on cures would be sufficient to earn their understanding and respect. Unfortunately, I think I’m going to have to be more specific.

I think I need to tell them the ‘help’ they’re offering is hurting me.

Now I have to go write that dang email. Maybe I should attach my “Curbie Free Zone” painting haha.

That would be easier to do if I thought it would give them a smile.

I wonder.

Yes…no…yes…no…big sigh….


At 11:52 AM, June 05, 2006, Blogger Do'C said...

Hi Mum is Thinking,

"I think I need to tell them the ‘help’ they’re offering is hurting me."

I try to skip the "golden rule" and go for platinum.

At 12:21 PM, June 05, 2006, Blogger MothersVox said...

Hi Dad of Cameron, I love the platinum rule. Fantastic post.

Hi Mum is Thinking, You've got the other extreme of what happens in our extended family, where almost everyone thinks that Sweet M doesn't have anything unusual about her that a good whoppin' wouldn't fix. I'm not kidding.

But D o' C's platinum rule works in each of our situations!

At 12:44 PM, June 05, 2006, Blogger Sharon said...

Great I can get in now! I couldn't comment earlier!

I was writing about those very thing on an e-mail list recently and said that it appears that sometimes family members think that telling us about this TV show or that newspaper article, is a shortcut to helping us. It's like they are thinking; if you could just do this, then your problems would go away and we wouldn't have to think about it again.
I prefer those who help us where we are right now and love and accept and enjoy my son as he is. Thankfully, I have a few close family members who have taken this route, esp. my dad!

I'm sorry you have to deal with so much unwanted and rubbish information though. And Mothersvox, imagine thinking that hitting Sweet M would 'fix' her! That is horrible.

At 4:50 PM, June 05, 2006, Blogger Mum is Thinking said...

DofC, sounds like you've had a lot of experience dealing with this situation, thanks for sharing! I love the platinum's good advice on how to handle bad advice :-)

Mothersvox, thats awful :-O It must be hard not to whallop the family member who gives that bit of advice, and see if it shapes them up?

Sometimes you have to wonder if these people really want to help or just hand out blame. "Just give them a good whoppin'" sort of edges into the area of blame, both towards you and your child, doesn't it?

I'm glad the platinum rule worked for you :-) I guess we have to toughen up and use this one, as I'm starting to feel I have tire treads across my forehead from being run over with 'great ideas'.

Sharon, I've thought that too...that the advice is a way to feel they're doing something valuable, and if I don't choose to follow the advice it's going to come back to haunt me. It worries me that if there's a problem or a setback we're going to hear how we should have tried "Dr. Vargle's Amazing Super Duper Elixer" and everything would have been just hunkey-dory.

Maybe I'm just a worry wart, but it feels a bit like being set up for an eventual "I told you so!".

Of course, in our situation, there's the added difficulty of distance. We live so far from my family we haven't been able to visit for years, so all the information they get is either what I tell them (he's doing great!) or the type stuff you see on the news (the 80% divorce rate quoted on the AS video was mentioned, parents driven to murder and suicide by stress etc...)

I guess it's no wonder they worry; that was their reply to the email I sent :-( I should have realised that, as most of the stuff they send me is the 'dire warning' type stuff.

At 7:20 PM, June 05, 2006, Anonymous Anonymous said...

Once upon a long time ago I read a comment: "It takes a village to raise a child... Now I with the village would take a hike!".

Ah... here it is... different disability, but some similar issues:

At 4:54 AM, June 06, 2006, Blogger Mum is Thinking said...

Thanks, anonymous. It's a good article, and yes, most of this applies to us as well.

At 7:12 PM, June 09, 2006, Blogger Julia said...

I appreciate the article Anonymous linked to, and passed it along.

My mother-in-law's sister mentioned something about autism on TV when they last talked and the message was passed to me to check it out on the internet. I think this great-aunt of my son's isn't going to retain a whole lot of what was said, just that she saw there was something on TV that might be helpful. At Thanksgiving, I'm going to brace myself for the worst in terms of interference, but hope for the best. What happens will likely be somewhere in between.


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