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. 

This is why I advocate

This. This is why I advocate. This is why I go on and on and on about the right supports. This is why I get all worked up about accepting people who are different than us. 

click here to watch the video

My kids have another difference than these kids, but they live in the same society- one that holds such strong prejudices that these kids see themselves as different and therefore less and bad and ugly simply because that is what society tells them. This is horrifying. 

This is why I advocate.  Because when I fight for "disability rights" I am really fighting for human rights. Because when I stand up for justice for my kids I am also working towards making a change that will support all kids who are treated unjustly simply for not fitting the "norm". 

This is why I advocate. This is why I will never stop.




*this blog entry is a copy of one I published originally at different kinds of normal

Exploring a train of thought- The problem isn't Autism?

I haven't done this before, but I am going to share with you all an unfinished train of thought. I've been tossing this around in my head for a while. It's still very broad in terms of concepts explored.... but it's a start. 

Image source 

I've been wondering, since I honestly believe that Autism is not a "disorder" but instead is a different kind of neurology, where that leaves me in terms of calling it a disability. 

I have tried to identify key things that make an Autistic person different, and then figure out what is behind each thing that is actually in common with a person who is not Autistic (or a "person lacking Autism" which is a phrase I read this week, and L O V E).

So, if (in the case of my kids)......
Meltdowns = not having sensory regulation needs met
Not wanting heaps of social contact = introvert 
Struggling to keep pace at school= system designed in a way that doesn't suit his/her learning style
Stimming= society believes some stims are inappropriate based on some arbitrarily decided-by-no-one-in-particular set of constructs

Then I come to this.....
Theory- autism is not so much a disability in itself, but society disables Autistic people by being unwilling >to accept some differences as part of the normal or >make accommodations to support their needs.

Thoughts?