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Wednesday, June 29, 2011

Being A Know It All Parent.

From the moment I noticed Harri avoiding eye contact as an infant I began reading about Autism in young children online. At that time however I was struggling to manage his day to day behaviours and had only the opportunity to do some brief research. I also mostly dismissed Autism as an explanation for his difficult behaviours up to the point he was diagnosed about 8 months ago. However once we had the official diagnosis of pdd-nos I read voraciously on the topic, and continue to do so. I also undertook responsibility for most of Harri's therapy at home for the first 6 months post dx, and of course recommenced blogging and consequently reading lots of other blogs. This has meant I spend around 3 hours a day reading about ASD via either first hand accounts, parental experiences and forums and research online. I have also read many books on the topic and of course I live with a little person with Autism so have my own first hand experience. Oh and then there's the 2 hours of therapy each day that I sit in on. That's a lot of time spent thinking about Autism and I guess it means I know more than the average parent out there who is more comfortable with leaving it to 'the experts'.

What it also means is that I have become a know- it- all- parent.  Iv'e spent so much time analysing my sons behaviour, reading about ASD, wrapping my mind around current research and theories etc that I consider I am entitled to hold opinions about Autism generally and my son specifically that don't always meld with therapeutic intentions. I'm OK with that as I feel confident in my ability to articulate my reasons for thinking the way I do in a manner that would be coherent to most therapists. But I imagine from the point of view of the therapists I must sometimes be a pain in the arse. And intimidating at times also. I do try to act with humility most of the time and defer to the knowledge and expertise of those who work with Harri, in particular the senior psych who oversees his learning program, but at times I wish I could engage in more complex philosophical questions about their approach. Or that the parent nights we are expected to attend once a month didn't make me feel like I'm being taught to suck eggs.  These information evenings are great as an opportunity to meet other parents and hear the stories they share about their own young children, but the presentations are so basic, and I understand why, but being a know-it-all-parent, I've already read all the basic stuff. I want to get to the meatier more complex neurological and sociological questions. I've already managed to mention the word neurodiversity a couple of times at these sessions, and I have shared my DVD of Loving Lampposts with as many staff as possible so the senior psych probably already has her eye on me as a possible trouble maker in the ranks. And then last night when a parent was sharing a story about his sons extreme copying behaviour I pointed out Harri does the same and it is called echopraxia. The therapist said she had never heard of echopraxia before. This was shortly after a mum mentioned a book she had been reading written by a mother who had intuitively use ABA techniques back before ASD was well understood, I told her the name of the book was 'Let Me Hear Your Voice', and I'm sure at that point I could hear the therapist thinking, "smart arse". And she'd be right, I suppose I am.

So I'm out and proud as a know-it-all-parent. I am aware I still have a long road to haul with Harri and a lot more to learn, and I hope my smart arsery won't offend his team of lovely therapists too much, but I am what I am. A parent who wants and needs to understand what her sons world looks like, and what the intentions are of those who seek to help him. And just what is this fascinating thing called Autism that is now such a fundamental part of my life?

7 comments:

  1. Know what you mean. I used to be too timid to tell a professional that what they were doing went against what I had read about autism, but I'm over that now. I hope you continue to be a smart arse, because no one is as well-informed about their child and motivated to help him or her as the parent. And I also love that you share your wealth of information and opinions on this blog. Keep up the great work.

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  2. Good for you Christy, and thankyou so much for your very kind words.

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  3. Yay for being a smart arse! I used to keep my mouth shut but now try to be polite as I can and say something when the need arises. I'd rather be a smarty pants than not!

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  4. I wish I'd been as informed as you are, back in the early days of my son's autism. I can easily recall many times that my son's team of therapists and other helpers would suggest or do something that didn't sit right with me (or my son) but I didn't have the terminology or deeper knowledge to affectively question it. I would question it and raise my concerns - no doubt - but I didn't really understand the grounds of my objections, so I often felt rather powerless and confused.

    Now that I regularly blog and read blogs (such as yours), I find everyday I am learning something new about autism, and every so often I learn something that particularly pertains to my own son in a way that makes his and my life better.

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  5. Thanks Lizbeth, yes I try to be polite too. I figure these people are in my life for a long time and there's no value in an antagonistic relationship.

    A@O, I think one of my primary drivers is exactly what your comment brings up, being able to engage with therapists using their language. It's also evidence of my own tendency to become fixated on things. A spectrum trait without being on the spectrum.

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  6. Very interesting. The parents I mostly talk to have children attending the same ABA school my son is in, and actually most of them are like me and super thirsty for knowledge. I guess it's a different dynamic with the therapists because besides the lead therapists, there are a lot of college psychology students getting some field practice, basically, so most of us have no problem openly questioning them hahaha. I am glad you are not afraid to voice your knowledge to parents and therapists alike and question methods. I don't think I've ever heard of echopraxia, either, honestly. :)

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  7. Sunshine sounds like you are in with a great group of pro active parents. Lucky you. As for echopraxia, I wouldnt expect most parents or even psych students to know what it is, but the lead therapist who is board certified and been in the field for many years? That surprised me.

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