Saturday, August 31, 2013

Interacting with people who are not accepting of Autistics

Over the last couple of months, I've had a couple of experiences with members of our local community who are aware of Autism, but not very accepting of it. It's a hard situation for me, because I like to think I can be tolerant of and gracious towards all people, but I am learning there are some people I just can't. I'm going to tell you two stories, and you will see what I mean.

Quite a few weeks ago I posted on my facebook page about a conversation I'd had with a man at playgroup. When it came up in conversation that I have Autistic children he said "Oh no! So what do you do? Are they like real members of the family?" Of course, when I write it down his intonation is gone, and it is impossible to read the intent behind his words. Face to face I could tell that he did not mean to be offensive. He was trying to let me know that he knows enough about some Autism to realise that there are Autistic people who struggle significantly with communication and socialisation. He was way off base in his interpretation, and so I tried to calmly point out to him that his comment was inappropriate and take the opportunity to help him learn about acceptance of people with differences (which is everyone!). This kind of person I am happy to talk to and engage with because I believe they are honestly trying to understand and are open to learning. 

Last week I was subject to what I believe to be an unprovoked written attack by someone in my local community while she was contributing to a  discussion with a mutual friend in a public facebook discussion. This attack stunned me in its viciousness and the strength of the disdain this person has toward me. I honestly don't know why or if I have done anything real to provoke it. Twice in the past I have done things I knew would upset and result in my being publicly attacked, but I did them anyway, after attempting to explain to the other people involved, because I believed then (and still do) that it was the right thing to do to serve the needs of the community. This time I am sure the person thinks I have done something, but I don't know what it is. 

So this is what she said......I will not quote her, as I did in the first story, because the words she used I don't care to repeat, and because she referred to my children using a word I wouldn't use against my worst adult enemy (I don't actually have a worst enemy, but you know the saying....!!), let alone against a child. The polite summary of her beliefs about me is this:  
your children are not Autistic, they are just poorly behaved. They are poorly behaved because you need to back off from parenting them the way you do. You only had your children labelled with Autism because you are lazy, you want attention and you want access to government funding. And six children is too many. The comments were not said to me, they were said about me in a conversation I had been tagged in, so she knew I was aware of what she was saying. 

Now, to be clear, I actually don't really care what this person thinks of me. My response on facebook was to not respond. I gave it no public air time. I vented privately to a couple of friends about the language she used to refer to my kids and that I couldn't understand why a person would find it necessary to be so openly disagreeable. I didn't mention it to anyone else, because it is not that important to me. 

I mention the situation here only because I know others of you out there have faced similar situations and might like to know that you are not alone. It is not your fault. You do not need to second guess your parenting, your childs diagnosis or anything else just because someone who doesn't know your life or care to try to understand it says something to you, or about you, when they are in a bad mood. 

In this instance I chose to completely ignore the tirades because I believe the person was not at all interested in changing her mind, she just wanted to say mean stuff. Maybe she was fishing for a reaction. Maybe not. Maybe she was trying to make me look bad. Maybe not. Maybe she was looking for support from others. Maybe not. I don't know. I never will know. I don't need to know. My life is full and busy enough with things that are important to me that I do not have time to spend on people like the one in my second story. For people like the one in the first story, who may speak awkwardly and inadvertently rub me up the wrong way, I will continue to make time if I can see they are open minded. But the people who are only interested in attacking, justifying and demeaning, I have no time or even anyinterest in making time for. 

I hope that those of you who have experienced similar things can see that it is not your fault and that you needn't spend your precious time on it either. Instead, let's spend time putting our energy into our beautiful, unique families and our wonderful, brave and strong children! 

Thursday, August 1, 2013

The first lost tooth

When MissK lost a tooth a few months ago MissG was quite concerned. She wanted to look at it, and at the space it left. She remembered the discomfort of the dental work she had done last year. She asked lots of questions.... will it hurt when I lose a tooth? Will I be able to eat? Will the new tooth be big? And most importantly, will it bleed?

MissG doesn't really cope well with blood. We have talked about how clever her body is, and that when she bleeds her body sends platelets to clot the blood and form a covering over the cut so her skin can heal underneath. We have tried to convince her that seeing blood is good because it means her body is doing what it should.  We have told her the sting is temporary, and will pass soon. These days, she can talk quite calmly about it, and knows in theory that she doesn't need to worry. But when the moment comes that she cuts or grazes herself..... she panics! It's a quick rush to cover up the wound and soothe and calm her until the initial surprise and pain subside. Depending on the injury and her general state of mind at the time, this can take a while.

So MissG and I have both been a bit nervous about her losing teeth. I have been working on "wobbly tooth readiness" for a while. We have talked about what happens to cause your tooth to wobble, how it feels, how long it might be wobbly for, and what happens and how it will feel when the tooth falls out. MisG's older brothers and sisters have been drawn in to the preparation process, and have all told stories about how cool it is to get big teeth and that it doesn't hurt much when the baby ones fall out. 

Then her front tooth wobbled. And she got excited! 

We talked about what to do if her tooth falls out at school. We told her teacher that her tooth was wobbly and that MissG wants to save it and bring it home if it falls out at school.
We waited.
She wobbled it.
We waited. 
She got me to check it.
We waited.
She ate crunchy foods. It hurt. She ate soft foods.
We waited. 
She wobbled it more.
We waited.
She said, "this tooth has been wobbly for AGES!"

And then last night, while I was at the shops, my phone rang.



I couldn't quite tell if it was an anxious yell or and excited yell. I went with excited...

"wow! That's great!!"


She was *so* excited. 

I was so relieved. Preparation had been successful, and she was happy. It doesn't get better than that!