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!
Comments
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.
xx and more xxxxx
Also I wish this attitude could be spread to more issues than just autism. Wallowing should be short lived, celebration life-long.
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.
well done missus! message clearly delivered XXX
Hope everything is feeling in control ;)
Sorry for being away, but you know...
So interesting post, darling.
Miss you
Lots of love
xoxo
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
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.
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!
Lovely post.