Monday, April 19, 2010

Ignorance is not bliss

When the diagnosis came down the pipe and we got the brand-new shiny label stuck on our child's forehead we went looking for answers to the squillions of questions that were rampaging through our minds.
I don't think I stopped reading or researching once we'd got our heads around the meaning behind the label; books and news articles were recommended from friends and chased up, diets and vitamin supplements researched then discussed with doctors, biographies and autobiographies read and discussed at length.
Heck, I even (briefly) researched freakazoid Bettelheim and his 'refrigerator mother' concept just to have information to fight the ignorance still lingering today which is his destructive legacy to those on the Spectrum.

The parents at early intervention would flock together, we'd found a safe place where we could unload about our battles with behaviours and stims, the latest goal reached or newest proposed theory/therapy.
We swapped tales of the Spectrum with each other with a momentary loss of the weight on our shoulders as we knew we all really got where we were all coming from, we all understood the path we were all treading.
Information and knowledge is often the only weapon we have against the difficulties the Spectrum throws up, ignorant strangers and even ignorant medical professionals.
I have never felt the need to explain or justify myself with other parents as, like the old saying, we do walk a mile in each others' shoes every day.
Recognising the emergence of new stims/behaviours is just a tiny thing but it helps to have read/researched it or heard about it from others in a support group or just in conversation.
It's just the tiny things that help make our lives a little more clearer, knowing what could be around the corner, finding a friendly ear to get the reassurance that, yes, the sun will come up again tomorrow and there is still hope in our future.


cerebralmum said...

I've always done exactly the same thing when faced with something I don't understand. Research research research. And finding those with similar problems is so grounding when everything seems to be so huge.

I often feel as though I don't know as much about autism as I should, especially as I know so many people (IRL and online) who deal with it every day. So I just read, or listen, and mostly keep my mouth shut and respect... Because even if I read everything ever written, I could never know what it is like to walk a day in your shoes.

Farmers Wife said...

My nephew has autism. He has moderate autism, and I find it peculiar that the line between mild, moderate and severe is so clear cut. How do they decide what is what....information for parents is the key and understanding and patience, things that my brother has in spades....

Ro said...

Thanks, Lani, it's the only way to win. New info/theories crop up everyday, sometimes it's hard to stay on top of them all.

Yep, FW, information gives us the tools to deal with the challenges and to help our kids, nothing to be learned from sticking our heads in the sand.

Mrs. C said...

I think if I hear that Woodjie is non-verbal because his older brothers keep talking for him one more time, I will scream. Once I snappily told the person spouting this that we'll have to shut up his LITTLE sister now, too.

Grrr. I wish people would just ACCEPT that autism exists in the first place. It isn't caused by big brother talking too much...

Ro said...

Mrs. C, that is a stupid fall-back theory...when all else fails, blame the child/parent/siblings/teacher/neighbour, etc.
Rather than admit they got no clue.