Thursday, December 22, 2011

Offending people is easy...

This week, with school over for the year, Billy and I have been driving about like looney tunes trying to get everything ready for Christmas.

I'd like to say there's a long story involved with why we are last-minute-Christmas kind of folk. There kind of is (dog kennel, crossed wires, postponed opportunity to have all that cooking and tidying done by older more experienced members of the family), but really we'd be running late if we'd started last January. So... we've been driving around a lot, and listening to the radio a lot. Actually, I've been yelling at the radio while Billy downloads endless episodes of SpongeBob onto (my) iPad.

Gosh, people on the radio are offensive. Especially people who ring in and complain about Christmas carols not being played in public places because we are all tip toeing around Muslims, apparently... (I hope I don't have to clarify how stupid I think this is...) Also people who carry on about how Christmas isn't like it used to be (oddly, I'm not like I used to be when I was 12 either, but I don't see the logic in lamenting the change). I'm also offended by the fact that it's supposed to be summer and it hasn't cracked 25 degrees Celsius yet (and this is Australia. It's hot here. It's kind of our thing.)

At the same time as I should be turning off my radio, and singing Christmas Carols to myself (lest I offend my neighbours), there's been an interesting question milling about in my head.

In autism world, the one thing we know is that all our kids are different. They all have different strengths and challenges. They look different. They behave differently. So much so, that at times it seems hard to fit them in under the same disorder umbrella (I have quite the image in my head, reading back that last sentence).

In reality, it means that we autism parents are often having conversations with each other as though we 'know' what the other parent is experiencing, when actually we kinda don't. Well, we do in the sense that we have lived through the 'holy crap, my kid is not like Johnny at playgroup' moment, and also in sharing the 'Thanks for that, Doctor, are you sure you have no actual advice for me?' diagnostic moment, maybe we also share the 'I will stab you with a pen if you continue to look at my child like that' impulse. But really, do we have a sense of the differences between our experiences at all?

My family is pretty fortunate as autism goes. Billy can talk, even though a lot of his language is scripted from other sources (some odder than others). He has pretty good control of his body, even though he is in constant, jerky motion that precludes kid stuff like team sports. He has stunned us this year with his capacity to learn at an age appropriate level, despite the fact that he struggles to to it in a mainstream classroom. He has poo issues. He has immune issues. He knows a lot about household insect eradication.

I have been fortunate to make a lot of friends in autism world, some I've met in real life, some I only know online. I've said before, and I'll say again, they are - generally speaking - astonishingly good people. Up until now, I've not really thought about how I could better respect their children.

I could make a list of the things we don't have to deal with or I could make a list of the things I am grateful for, or I could make a list of what I'm afraid to ask questions about...

I realise I often treat my autism friends in the same way I DON'T want people to treat me. I don't ask questions. I'm too scared to validate their reality. I just assume they think I understand, when really I don't.

How do you say... 'how do you talk to your child who doesn't talk back? or 'how does it feel when your child hits you with no remorse or understanding?' or 'do you think your child will ever write/speak/live independently'? You don't. You can't. So instead, we just act like we understand... or not.

This week, I've set some new rules for myself.

1. It's not so much what you say, it's how you say it.
I should think before I say, 'I wish Billy would stop doing Mortein commercials'. He's speaking. He has awareness of what he's saying. Yes, a lot of it is scripted. Yes, a lot of pronouns get reversed. Yes, he has a lisp and a BBC accent. But he's talking. Many, many of our friends are not. Bitching about how Billy is talking isn't helpful. Not for me, not for my friends, definitely not for Billy. Asking for help/strategies/experiences in the area of language... that seems OK. Whining because his language is a bee's penis away from 'normal', not OK.

2. It may never improve, so work on acceptance.
We're all up for a bit of autism hating. Not hating of autistic people, but feeling negatively towards the struggles that autism throws at our kids. But... shrieking with revulsion at some new autism related behaviour  is just a recipe for disaster. Not just for us, but for everyone else. I should be aware of how it feels, to the family of an adolescent who can't control their bowel for me to be blathering on about our sacrifices to the god of underpants. He's wearing underpants. Successfully more than not. That's a win.

3. Don't cry wolf.
Alternate rule title: Pick your battles.
Some days, hell some weeks, I feel myself settling into a wail-fest. Everything is hard. Everyone is an idiot. No-one gets it. I end up wanting to bombard my friends with the poo coloured clouds that are stalking my life. I want to fill my phone conversations, my emails, my posts online with my 'problems'... pithy, witty, well phrased versions of my problems but my problems nonetheless. But... I forget (all the time) that people are dealing with stuff I can't even dream up.  I forget they don't have the time or the space that our life with one pesticide obsessed Dalai Lama of a child affords. Already extended people have a limited space for my drama. They have a perfect right to a bit of... what's the phrase I'm looking for...? Compassion fatigue.

4. It's autism, not the plague.
You have several pairs of big underpants. Wear them. Proudly.

I do not want to be the reason why my friends are yelling at their computers. Nor do I want to become a stereotype of myself - the autism parent version of the cranky old lady who thinks people should wait in queues and respect their elders.

I want to present a positive view of autism to the world. I want people who have questions about autism, to feel like they could ask me anything. I want to have some accurate and meaningful answers for them.

I have no idea where Billy will end up, but I have some control over my own journey. So, like all good life changing resolutions, I will start from the inside out. I'm working on serenity, on integrity and on some consolidation of my cut-throat ninja skills for the moments when fools try and cross me.


Di said...

Bravo Valerie, excellent post!
I have two comments for you....
#1 For me, it really isn't a problem having a non verbal child AND it isn't a problem for me if you talk about Billy talking! So what, our kids are different, I love it!
#2 I would love people to ask me questions about Nick etc etc. 'Our' community is such that we are caring and respectful. Any fools will be dealt with accordingly 'Hie YAAAH' That is meant to be a ninja chop!!!! :D

Jennifer said...

Great post Val!! Although, honestly I have know you for a long time and I never see you doing any of the things on that list!

Anonymous said...

A brilliant post, and I'm pleased to make your acquaintance over the water as another autism parent. My daughter is almost 12 and was diagnosed at 3 years old. Reality is, she's amazing, incredible and my whole life; to others, she's disabled. Sad isn't it. For them of course, not me or Amy.

Found you via Di who I met recently on Twitter.
CJ x

Looking for Blue Sky said...

Hello, Di sent me over to yours and I'm really pleased she did as I'm finding this post very interesting. As someone who is borderline aspergers I'm afraid that I would end up tying myself in knots trying to analyse the stuff I say and write in an attempt to try and avoid all offence. I write about the good stuff and the bad times, basically anything that's on my mind, because my blog is primarily therapy for me, and when people like it, that's a bonus, if they don't like it, well they don't have to read it :)

Deenie said...

Hello. I am a frequent reader but infrequent commenter. I enjoyed reading this post vert much. I agree that sometimes we are guilty of the same things we don't want for our our lives. It's good to recognize it and try to change it. I've been trying to be a lot more honest about what our lives are like and give out fewer "everything's good" type answers when people (who really want to know) ask how we are doing.

Pest Control said...

I commend you for having such a wonderful post in here. I enjoyed reading and it's definitely worth the read!