Thursday, August 6, 2009

Shiny Happy Mummy


Lately there has been a lot of negative media about autism as a certain group seek to convince the world that someone or something is to "blame" for autism, outside simple apple/tree genetics.

There was an awful recent blog where a woman sought to express her "devastation" that her daughter would never play with Barbies or come and try on clothes in The Gap for fun (or something) because the kid has Aspergers and was more concerned with computers than a plastic anatomically impossible female stereotyping doll. The New York Times also did a bit on a similar theme.
I don't want to engage the haters - I would rather continue on blithely celebrating my kid's diversity and achievements, which are all the greater for the work that goes into getting us there.

Yep, we have the down days. And it is okay to vent a little amongst friends, it is a healthy way to burn up stress and get focused again.

But getting stuck in the phase of wanting to wipe your child's autism out completely (what if you fail, do you then hate your child?) or the phase of constantly wanting to fit them into the wrong shaped box - because that's what your idea of what being a kid is about - that is a road to nowhere fun.

Better to be delighted that they can count to 20 before their 2nd birthday (and saying Mummy will follow eventually) or thrilled that your non-verbal 9 year old can google "Oswald" and sort through the 10,000,000 results for a purple octopus (as opposed to a presidential assassin framed by the FBI)

And absolutely fecking thrilled that you brought into the world a healthy, active and able child.

You see there are many parents out there right now facing into a wait for an operation that their child needs just to take a breath independently, or constantly monitoring their blood sugars and insulin levels, or trying to find a way to help them feed independently, without choking. I think it is insulting to them to wallow in self pity for too long over a bit of autism.

Instead focus on what your child Can do, Does enjoy and try to expand on that to give them the skills to do the rest.

There are some people who will think I am a deluded fool. Cynicism and Misery sometimes pass for intelligence. Well feck em! xx





PS: A student has been in touch who wants to study the positive perceptions of
parents of children with autism and whether these positive perceptions are different in mothers and fathers. She feels that the literature on autism is dominated by stress related topics (!!!) and wants to study something more positive. The outcome of the study could inform family intervention and individual programmes for current and future
parents of children with autism.

If you want to help, please email affinityautismireland@gmail.com and I will send you the questionaire.

If you are a blogger, please link this post to your blog. Let's spread a little Joy!

18 comments:

K.Line said...

H: I saw this genius segment on CBC the other day in which a group of autistic activists spoke (very eloquently) about the vital importance in engaging autistic people in the definition of the condition and in making people aware that neurological distinctness isn't lesser. In fact, when pooled with "regular" thinking style, various autistic thinking styles can be a phenomenal tool for development in all fields (particularly detail-oriented research which is apparently very suited to many autistic brains).

I know (lefty that I am) that my brain functions distinctly from most of my colleagues. I know I approach things from the flip side - I see it all the time - and that I struggle with certain tics (albethey in the realm of "normal" - whatever the hell that means). While I'm not autistic, I can appreciate that neural otherness is not bad. In fact, it can be awesome.

Hammie said...

Neural otherness is awesome - can I have that for a T-shirt K?
xx and more xxxxx

Sal said...

Damn right, Hammie. No one is doing a child any service by wishing that child was different.

Also I wish this attitude could be spread to more issues than just autism. Wallowing should be short lived, celebration life-long.

drwende said...

If Devastated Blogger Lady is getting all weepy about trying on clothes at the Gap, she sounds like the sort who would have found something to be disappointed about regardless of her child's personality or condition, as no child can live up to a really well-developed parental fantasy.

LOVE the phrase "neural otherness."

It may be that the best advice for parents -- and not just for parents of children with autism -- is to keep the preconceptions minimal and focus on finding that child interesting while inflicting such civilizing efforts as are necessary in turning a toddler into a sensible adult.

K.Line said...

Hammie - It's all yours! And not sure if I was clear in my comment: The activists themselves were autistic - it was amazingly inspirational to see them advocate for other autistic people.

Jean said...

thank you dear lady for giving a two-fingered salute to self pity. sure, we all go through the awful, dark days...i fact i'm sure we HAVE to , to get to the stage of acceptance. but self pity is a hideous beast. what child wants to grow up feeling "mammy would love me if i was a little bit more normal" ? I adore my autisitc son and celebrate every goal he achieves, wacky or ordinary, it doesn't matter. he has made my whole family better people.
well done missus! message clearly delivered XXX

The Seeker said...

Gorgeous!!!!!!!!!
Hope everything is feeling in control ;)

Sorry for being away, but you know...

So interesting post, darling.
Miss you
Lots of love

xoxo

jazzygal said...

So, so much to agree with here.

Every one of us in this world, Autistic or not has something to offer and we can all learn from each other.

Too much time and effort can go into mourning a perceived loss yet mourning is also part of the acceptance process. Getting it into proportion is the trick. Mourn... eventually accept...then celebrate!

I really believe no-one can celebrate their child's achievement more than the Autie mum's!! ( I say Autie 'cos it's not always evident that our kids have special needs). I mean...we really do shout it from the roof tops when they achieve the slightest thing!!

And long may that last! xx J

Make Do Style said...

Carry on being the wonderful shiny happy mummy! the world needs more....

Siobhan said...

I really liked the way you put 'a bit of autism'. It made me laugh! Thankfully I feel I've reached the stage of acceptance.Two years now, but i made it. Its so true, I'm sure my friends thought i was a bit mad when i got so excited when my son TOLD me he was hungry! The good days!

~Tessa~Scoffs said...

I have to confess I was one of those mom's that just wanted the autism to go away. And it did. Sort of. My Charmant (of course) still has moments of shutting down and minimal eye contact when he's upset, but other than that he "qualifies" for nothing: no special classes, no services, no therapy, no OT, no food issues. All gone. He recently took part in a study (I think it was about music aiding social stories) and I haven't gotten their report back yet. I feel like I'm cheating putting him in studies because he's not "that bad" anymore.

But back to what you were talking about: parents wishing a child were different/better. My oldest child (not on spectrum) has anxiety and separation issues. It's hard to explain to other people who think a 10 year should not say goodbye ten times and hug me and kiss me just because I am going to the grocery store. It's hard to resist wanting him different but I keep thinking that one day, when I'm pissing myself at 89 years old, he'll be the one to take me to lunch.

WendyB said...

Wow -- can I borrow the octopus child? That's amazing.

Nan P. said...

Ok, I love that video, makes me feel like wanting to be a monster, looks such fun!... Let's face it, I have been in love with the Muppets for sooooo long! I envy their lifestyle so much.

But hey! Guess what, may be I am one already, since I am dyslexic... It takes "funny" forms, but the clue is the way I often type words in the wrong "order"... ending up with a totally different word than what I want... and no matter how much I read back, it still looks fine to me, as intended... Until way later! Doesn't stop me from succeeding in anything I start. What if my parents had given up on me? What if they had not invested in all those specialised tutions for so many years?

On another side, Cathal's Difference is has given me such an appreciation for every single one of his achievements, I celebrate them all, the tiny ones, and the big ones. And THAT has made my life so much richer. Bring it on, I say, bring it on!

Skye said...

As ever, words of wisdom which can be applied by any parent of any child!

Elbog said...

We are all deluded fools - it's just a matter of flavor and degree. . . ;^)

tazzy said...

I waited 5 years to adopt Button and then my darling boy nearly died of TB at 11 months old. I'm just happy he's here!

Cathal's Mammy said...

Hear Hear

Sharon said...

This is a bit late but I couldn't get to my computer when I first read this post. Duncan was with me and we watched the video many, many times! He's been going through an REM phase lately. He especially likes "The Sidewinder Sleeps Tonite."

Lovely post.