I guess by now you have realised that my biggest gripe about Zacs journey so far is the ignorance of others, which is not fair really because I was once one of them! I too did not know much about Autism, but knew enough about learning difficulties and other disabilities. I can't blame people for not knowing, and I don't really but what annoys me and my wife is the judgement and the lack of grace extended by those ignorant people.
You see, on the outside, Zac is a very normal looking kid. He smiles, he talks ok, he introduces himself all at once as "HiI'mZacharyWilson" and he can do pretty much everything else a kid can do, but its the extreme behaviours that people don't understand. Hell, our families don't really understand them because they are not around him much.
Mention Autism and people think – disability. When Zac was first diagnosed in November 2009, I told a friend at work and she said, "Oh, I'm sorry" as if I had just told her he had died. Even recently, I was telling another work associate who is pregnant that I had a son with Autism and she looked at me and said, "Oh, thats something I should know about" and then asked if I Goggled a lot about Autism.
For many parents of kids on the spectrum, behaviour is the biggest issue, especially when out and about. I have heard and read stories of parents who are basically trapped at home because their kids "tantrums"( I wish we could call it something else!) get so out of control, the emotional distress on both parent and child is just too much to bare. We too have been the subject of stares and looks, rolling eyes and chinese whispers.
Renee was in Centrelink one day, and as we are in a regional area, we actually have an office for the aged and disabled. Well, she was in line, Zac was in the pram which was the last place he wanted to be. The line was full of older citizens and Zac was playing up, causing trouble and being loud. He was crying because he wanted something and of course, Renee had to do what she had to do, but the "oldies" in the line were all looking at her with their judgemental eyes and a couple of old biddies in front actually tutted at the noise. In the end, Zac needed to have his attention changed, so Renee took him outside and calmed him down then returned to have the same ladies walk by and said, as if it was their place too, "That's much better now, isn't it?". Makes you want to be violent!
Recently, we were at Nandos. Zac was sick and it was the wrong choice for dinner, but we went anyway. Zac whinged as soon as we got there. We didn't get the right table number and then the chippies were too hot. They had salt on them so it burned his little dry, cracked lips. Well, a young guy came in and sat at the table behind us. I was getting frustrated at Zacs constant crying which seemed to bounce off every wall and echo through the store. After much shooshing and comforting, Zac was still upset and then the guy turned to us an yelled at the top of his voice, "Will you f...ing shut him up...smack him or something."While that sinks in, yes its true and no, not one bit of it is an exaggeration. Needless to say we left, leaving a few choice words behind us,.
Ignorance does not just relate to the general population, I know of parents who refuse to accept the diagnosis that their child is on the spectrum as if ignoring it will make it go away or if accepting it means their kid is different. Hey, they are the same kid you loved before the diagnosis, Autism is not a death sentence, nor is it a disease...nor will it go away. Parents need to accept it – and as soon as possible because your kid needs you to fight for them!
Do I want more people to understand Autism? Sure. It cant hurt, but what I want more is that society becomes a more accepting place for my kid and other ASD kids to grow up in without fear of judgement or misunderstanding, but I cant stop that, I can only do what I can. That's why I love the website listed here. Zazzle.com.au has clothing specifically for autism. Tee's with great slogans like "If you stare long enough you might cure my autism, then we can work on your problem." There are some real pearlers and if it means that by wearing a teeshirt my kid gets less stares and moreunderstanding, hell, I will dress him head to toe.
Check out the website, its great! http://www.zazzle.com.au/autism+tshirts
There are a few kids at a school I know that have been diagnosed with Asperger's and other spectrum disorders early in their lives and the parents have either chosen not to divulge the information to their kids, or not gotten the kids retested when they were encouraged to do so (I'm not sure, but think their kids were supposed to get tested again in early teenage years??). So these kids end up without funding from these decisions and without any help in the classroom - which can be pretty stressful places even for 'normal' kids! Bit sad when parents can't accept their own - from one of my favourite Australian movies and one of my favourite movies that deals with thye theme of Autism - The Black Balloon (This is paraphrased)
ReplyDelete"Dad, do you ever wish Charlie was normal?"
"I guess I did at the start, but not anymore. Charlie's Charlie. Your mum reckons we were given Charlie because we're strong enough to deal with him."
"Do you think that?"
"I dunno, your mother is that's for sure... All I know is he's my own. And you're weak as piss if you don't look after your own..."
Ahhh this post brought a myriad of forgotten memories to mind, and the attached emotions... I have an 18y/o sibling with a disability, Down Syndrome to be precise, and distinctly remember the stares, whispers, rumours, comments, frowns, glares and most of all the frustration that accompanied this. Of course it still goes on, but I guess I have learned over time to steel my tongue and ignore the ignorant.
ReplyDeleteJust the other day I was standing near a doorway at a regional organisation for adults with disabilities and a lady who I believe had Down Syndrome walked through that door and bumped into an oncoming taxi driver who was collecting another young man. The lady had an obvious speech impairment as she attempted to verbalise an apology. The taxi driver looked straight over her shoulder to ME and said "Ha ha, yeah.. yep whatever, no idea what you're saying anyway weirdo." With a wink, he then turned and left me standing there dumbstruck... The only feelings that I could decipher in myself were indignation and that of being violated; in no way did I wish to be a part of his heartless parody.
Love the shirt idea. I also discovered a few four letter words which worked when I was at school, although I now consider that I'd like to remain above their level. My brother is a much greater asset to society than they could ever imagine, and it's entirely their loss.
I think we have the upper hand on this one. ;-)
... Am loving your blog. Flicking back the older posts, enjoying every minute of avoiding study. Thanks!!
Thank you anon....I appreciate the confidence boost and the fact you are enjoying it!
ReplyDelete