Phew. It has been one of those weeks with Amy and her autistic ways. She has had a wee head cold this week and this has triggered her big-time. I suppose none of us are on our best behaviour when we feel poorly. This is especially so for Amy.
A lot of her more hostile behaviours have exhibited themselves this week. At Kindy she was pushing, hitting, pinching and even attempted to bite another child. Her Kindy haven't seen her in full flight so it was kind of good she showed her true colours as such - especially as they (via the Ministry Of Education) are applying for a teachers aide for Amy when she moves into morning Kindy (around mid-May).
As her Mum, I can read Amy like a book. I can pre-empt a lot of her behaviour. In fact, managing a child with ASD is mainly about being several steps ahead of your child. Sometimes it is like living with some kind of a child-God. If conditions aren't set up in the way they want them, or people aren't responding in the way they'd like them too: they lose it big-time. Of course it's all a lot more involved than that. A lot of it has to do with the fact that the ASD child is unable to put his or herself into anothers shoes. This makes just about every social encounter very difficult.
Tuesday morning I went to the Nelson/Marlborough support group meeting for parents with ASD/Aspergers children. It's the third meeting I've been to. Yet this was the biggest one - there were approximately sixteen adults present. The other two times I took my daughter but this time I left her with a friend. Just as well as it was a rainy day and there were no children present. I am the newbie ASD parent on the block making Amy the youngest child with a diagnosis. Amazingly a lot of the children had a diagnosis made quite a lot later in life. However the founder of this particular support group set it up around twelve years ago when she her two children were both diagnosed with ASD. I am very lucky as a parent that there is so much support out there.
I stayed for an hour at the support group. It was very casual - just parents talking to one another. It was interesting meeting other parents. But like anything, just because I have something in common with someone else; it doesn't mean I'll click with everybody. Antenatal classes spring to mind - another situation where random people are thrown together because of a common thread.
I find talking to others who have some experience with autism can open up a big can of worms. There are so many theories around why it exists, for example. And every parent is going to differ on how they choose to manage their child with autism. Just in an hour the gluten/dairy-food topic came up, mainstream versus putting a child into a special education class (more for children with low-functioning autism) and when was the best time to tell their child they had autism/aspergers. (There are some lovely children's books around on the topic, apparently).
As I say, I am a newbie Mum of a child recently diagnosed with autism. Six months post-diagnosis and I am just getting my head around the support available. I'm taking it all One Day At A Time. I'm not ready to get into it too deeply just yet.
I have been reading excerpts from How to live with Autism and Asperger Syndrome: Practical Stratagies for parents and professionals by Chris Williams and Barry Wright this week - given to me by an early intervention teacher. It's very interesting but even all that information was a bit of autism-overload for me this week. I related and identified with a lot of what I read and this was both a relief and a bit upsetting. There are examples of children with autism and aspergers in the book and I found it hard seeing my daughter in those children. Especially older children, still struggling. I have tried not to think too much about Amy's future and to just work with what we know today. But I have been a bit churned up this week around Amy starting school in a years time. She will be mainstream but I am worried her social delays may cause a few problems for her (without Mummy holding her hand!). This is our aim for the next year: to get her prepared for school as best as we can.
I got an email from Autism New Zealand this week indicating that actress Jenny McCarthy was going to be on Oprah talking about her son who has autism. I watched the show but didn't agree or identify completely with the message coming through. No doubt there is some controversy around whether autism is something a child is born with - or whether it is brought on. Jenny strongly believes a vaccination caused her sons autism. She is also a big advocate for dairy and gluten being taken out of a diet for a child with autism. She's written a book about her story and does say that her ideas may not work for everyone - but it's worth a try.
Like I say, I'm not in a place for exploring autism too deeply right now. I don't actually care why my daughter has autism. The fact is she does! All my time goes into helping her socially. We play together all the time and I organise regular one-on-one play-dates. She also goes to Kindy in the afternoons and goes to Music once a week. The point is, she is out there socialising like any other preschooler. She just needs more guidance than some.
What I understand about autism - and all I need to really know for now - is she is simply socially delayed. Because Amy looks at things in detail, it takes a little longer for her to see the bigger picture. Yet she is moving forward in leaps and bounds right now. Sure, a lot of inappropriate behaviour happens but she is getting there. She has friends, seeks out other children and has fun socially. That tells me she is doing okay.
I'm choosing to just deal with what is right in front of us instead of focusing on why-did-this-happen. This week has been proof to me that too much information about autism just does my head in. My fight against autism is simply looking at my child and working out what she needs to achieve to "fit in" socially. A lot of my time and energy is centred around play. I get down on her level, and spend a lot of my day on the floor when we are at home and we play, play, play. Sometimes Amy will initate play. For a long time she would simply line up her toys in rows. But now the toys are coming out of their rows and are starting to talk to each other. Other times I will set up more complex games such as using play money and setting up a toy shop. The more we repeat these games, the more she starts to play them on her own, with less guidance. Her play is evolving and that is all the proof that I need that her social world is shifting.
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