Shh...Mum is Thinking

Sunday, June 25, 2006

Different Like Me

I bought a bookcase today, tra la la…no more books stacked on top of books and two rows deep on each shelf of my old book case, no sir. Not to mention the box stuffed full of books in the garage, the old stacking toy bin with all three shelves stacked high with educational books, the closets full childrens of books, my sons dresser piled high with books, the books under the coffee table, the books in the magazine rack in the hall, the books stacked next to my bed (and did I see a few under the bed as well? Hm…)

Crikey, I just realised I should’ve bought TWO new bookshelves. There’s no way they’ll all fit. Bummer.

Speaking of books, I recently bought one I’m very pleased with. It’s “Different Like Me: My Book of Autism Heroes”—I found this the day before Autistic Pride Day. It’s proved spot-on-perfect for my 7 year old son. It starts with an introduction by a boy (fictional? I dunno...) diagnosed with autism, and then short biographies of people like Einstein, Warhol, Hans Christen Anderson, Temple Grandin, etc.

I know many people are uncomfortable about ‘diagnosis after the fact’ of famous people, but this book seems to put less emphasis on these famous figures ‘having autism’, and more emphasis on their being ‘different’ in ways my son can relate to. So perhaps if you feel uncomfortable with calling Einstein autistic (I don’t, but whatever…) this book would still be useful simply because it shows that being DIFFERENT can be a useful and good thing.

We’ve working our way through the book during home schooling, reading a couple of biographies each day. When my son shows any interest in learning more we’ve searched the internet for additional information. So far we’ve searched for info on Warhol, Benjamin Banneker, Kandinsky and Alan Turing. I like that my son is relating to many of these people, seeing bits of himself in their struggles and strengths.

Warhol has been his favourite so far; he copied some examples of work during his free time, soup cans and such. Funny, he pointed out the Campbells soup at the grocery this week—“Look, mum, it’s Warhol’s soup.” The design and text are so different, I suppose it must have been the colour red and the name on the front that clued him in.

I find it amusing that Warhol started out as a newspaper and magazine illustrator, and early on was mainly known for his drawings of women’s shoes. :-)

Amazing what a parent will learn while home schooling. Hmm.

Wednesday, June 14, 2006

June 18th is Autistic Pride Day



Autistic Pride Day is just a few days away on June 18th. Anyone interested in finding out more can check out this site http://www.aspiesforfreedom.org/autisticprideday/

I understand there are a few organised events in different parts of the world, but our family will be celebrating in much the same way we did last year: a simple picnic, weather permitting, casual conversation and a project to finish together. I like the idea of a low key family celebration; somehow it just seems fitting, and works so well for our little family.

Last year we talked with the children about some of the positive aspects of autism (original view point, ability to focus intensely on a project or interest, attention to detail and the ability to think independently from pressures of the ‘crowd’). The boys enjoyed learning about some of the famous people who are assumed or known to have autism and why it would have been a beneficial part of their lives and development. We also discussed some of the challenges these people often faced, and how it was useful to have the ability to stand strong in their beliefs and not be swayed by social pressures. Stubbornness isn’t always a bad thing ;-)

Our family had been through a particularly stressful period last year; it was at about this same point in the year that we made some major decisions and changes in our life. I think our APD celebration was in many ways part of the turning point for us—it gave us a chance to discuss with the children and between ourselves how we wanted to deal with different issues and reaffirmed our determination to raise our children with pride in their differences.

It was also a chance for us, as adults, to reassess how we deal with our own differences, and in some ways, I think this was the most important issue of all at that time. We started to discuss our own reactions to issues similar to what our child was dealing with and realised it would be impossible to raise a child to feel proud of traits that we are stressed about or ashamed of in ourselves. Learning to give ourselves a break when we need it, giving ourselves extra time to process information (“Hang on, son—shh—mum is thinking”) and looking for clarification when things around us aren’t making sense. Most importantly we’ve realised that we shouldn’t be so HARD ON OURSELVES, because it not only hurts us, but the children pick up on it, and eventually it will affect their own self image.

This year our APD celebration will be more relaxed and not so serious :-) We plan to spend time playing around with some of the different interests we have in our family. I think this will be fun, as we've all picked up a bit of interest in each others hobbies over time: everyone in our family can now name most native birds, insects and plants thanks to mum's interest...we all know a smidgeon about computers thanks to dad...my older son keeps us up to date on new computer games, graphics and the companies that create them...my youngest is the car expert. I love the way we expand each others horizons, in these and so many other ways.

Hm. I meant to write something lite, this ended up so serious.

Here’s something to lighten things up again…sons and I were looking up native South American animals for a school project (a book). We came across this site while researching guinea pigs:

http://cuddlycavies.homestead.com/costumes.html

We hit the floor laughing over this one, it’s so cool to come across a funny site by surprise like that :-) It's kid safe, too…

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.
-Anonymous

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.

*sobs*

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….