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! 

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.

"Hello?"

"MY TOOTH FELL OUT!!"

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

"wow! That's great!!"

"I WAS IN THE BATH AND I WAS BLOWING THROUGH THE STRAW AND MY TOOTH FELL OUT AND I GOT IT AND PUT IT IN A BAG AND I WIPED THE BLOOD WITH A TISSUE AND I WANT TO TAKE IT TO SCHOOL TOMORROW"

She was *so* excited. 

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

best birthday ever

 MissG turned 6 this month. We try to keep her birthday celebrations pretty low key, because she really struggles with big gatherings and lots of noise and unpredictability. This year she asked to invite her whole class, but when we talked about it she decided 4 friends would be good. We made some invitations and handed them out at school. We made a calendar and she excitedly crossed off each day as she went to bed. As the day got closer we regularly heard comments like "I can't believe it's only 5 days until my birthday" and "I'm so excited I'm going to be six". She had chosen a dinosaur theme for her party, so we bought a few things, and she decided what she wanted her cake to look like. Anticipation was running high. She was disappointed that two friends couldn't come, but it didn't matter in the end. She had such a lovely time with the two that came, and the party was very relaxed and enjoyable for all. Just as we were about to wrap things up there was a little moment of anxiety over something not going as planned, but she took herself off to her room for a moment, and re-emerged back in control and ready to have more fun. All in all a great success of a party, and as her friends were going she threw her arms around my waist and declared "This is the best birthday EVER"!!!  

Mission accomplished! 

Respecting his privacy

I realised something this week after a conversation with my 14 year old Autistic son.

I realised he is growing up. It sounds obvious, I know. But I don't mean he is getting taller, or more competent or wiser. I mean he is wanting to start to understand and navigate some of the more complex issues in relationships.

Then I realised something else.

We are entering a period of his life in which a lot of the significant things I will probably want to write about him will actually be private.

And I will need to honour that.

This seems a shame to me, in that the sharing of these sort of things with you all would likely be helpful for many. Lets face it, navigating the teen years is a time when parents value the support of other parents. Possibly even more so when we are navigating them with children who struggle to interpret social situations at the best of time, let alone with raging hormones while the situations are all new and the rules constantly change.

However, while I'd love to be able to engage in those sort of conversations with you, this falls squarely in the category of things I would not want my kids to see in future years that I had published about them. Especially since there are quite a few of you reading this blog who know my family personally.

So, you might notice me talking a bit less about my boy over the next while. At the very least there will be gaps in what I will be willing to say.

Because I love him.

Because he has a right to do this growing up without the world watching.

Because I respect his privacy.

Wooooooooo!!

This picture tells two stories.

First- I caught MissG mid stim.

{I have talked briefly about stimming in this post at Different kinds of normal}

Nick Walker defines stimming this way-

"To stim is to engage in movement and/or in other activity that stimulates one or more of one's senses, for the purpose (whether intentional or purely instinctive) of regulating one's own sensorimotor experience and/or state of consciousness. Examples of stims include (but are certainly not limited to) such activities as rocking, hand movements, humming, drumming, touching a surface, or gazing at running water. Functions of stimming include (but are certainly not limited to) self-calming and self-soothing; inducing, enhancing, or responding to experiences of sensory pleasure; regulating sensory input; integration of information; and accessing specific capacities and/or states of consciousness."

MissG licks her face as a way of regulating sensory input. She does it when concentrating hard, when stressed, excited and tired. Before we realised the licking was a stim we tried to get her to stop. She would say "I can't help it". Now we know what it is we don't ask her not to do it, we focus on teaching her how to care for her skin by encouraging her to use a cream on her face to help protect and heal the skin. She likes the feel of the cream, fortunately, so it is easy to get her to use it. Now we are trying to help her remember to use it without being prompted. I hope that at some stage she will replace the licking with use of a chapstick or lip balm as it will mean her face won't be sore. In the mean time, she licks and her skin is often quite red. 

Second- "Josh and the Woo Woo" is MissG's favourite book. (This is NOT a sponsored post!) It tells the story of a little bunny who struggles with all loud noises, until he hears a steam train for the first time. It's cute, and she can relate to it. She also loves when I read it and do the Woo Woo's really loudly and as much like a train whistle as I can. She asks me to read it pretty frequently, and as she is beginning to be a reader herself likes to join in pointing to words she recognises. She pretty much has it memorised now. Tonight she asked for a piece of paper, and shortly after appeared to show me that she had written "Wooooooooooooooooooooooooooooooooooooooooooo" on it. She asked for her photo to be taken. 

So, here is a very proud and excited MissG, stimming and showing me her writing and her favourite book.  Wooo!

Reminiscing about the week of the helmet

MissG's birthday is approaching. I've been thinking about all the things that have happened in her life the past couple of years, and how much she is growing up. 

I was going through some old photos and came across some of her birthday week a couple of years ago, and they really made me smile. 

She had been wanting a scooter for a long time, so we bought her one for her birthday, and of course bought her a helmet too. She loved that helmet! We called it the week of the helmet and when she did something with it on we called it an extreme sport. 

Here are some of the things she did while wearing the helmet that week. 

Extreme candle blowing

Extreme cooking 

Extreme play dough

Extreme dress ups

Extreme movie watching

...... and of course, she wore it to ride her scooter

It feels good on the hands

I've been trying to get this picture for ages, but haven't managed to get a clear shot until the other day. Every time MissG comes to the supermarket with me this is what she does. We park downstairs and and have to use the travelator to go up to the shops and again to go back down to the car. I tend to get on the travelator and just stand there until I get to the top (why move my legs if I don't have to, right?!). MissG always runs up or down and when she gets to the end she stands between the two travelators and and lays her hands on the moving hand rails. She gets quite an intense look on her face while her hands rest there, like she is concentrating on something important. I asked her about it. She says it feels good and it tickles her hands. She says she likes that ones rail goes one way and the other goes a different way. 

While we were talking about it MasterL told me that there are railings around the stairs at his school that feel really good if he puts his jumper sleeve over his hand and runs it along the rail while he walks. 

No great break through or revelation, just part of our everyday.