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Tuesday, September 27, 2011

Spectrummy Mummy: A is for Advocacy


Spectrummy Mummy

A is for Advocacy


I have decided to begin an A to Z series of postings. Because I’m the kind of person who just has to start at the beginning, here I am at the letter A. A is for many things. A is for Autism and Asperger’s, of course. A is also for ADHD, another diagnosis for Pudding. A is for anxiety, goodness knows I’ve written about that, and hardly covered how it impacts our life. A is for auditory processing dysfunction. I could keep going, but today I’m starting with advocacy.

Whenever power cuts and my lousy internet connection have permitted, I’ve been following the dialogue series between parent-advocates and self-advocates. I’m glad I have, it has been illuminating, and I’m very gladTGPA provided this forum to air this most necessary discussion. Are we as parent-advocates listening enough to what self-advocates are saying? Can we really be doing so when organizations involving autism research and support don’t consult with adults with autism, effectively barring them from the conversation about them. Who knows autism better? Someone who lives with it, or someone who parents a child with the diagnosis? Both the (ongoing) series of posts, and the many comments have left me with much food for thought.

We have to start listening to what adults on the spectrum are saying, and supporting them in their advocacy efforts, particularly when, especially when we as parents don’t like hearing what they have to say. As was mentioned in the posts and comments, there is a difference between parental advocacy and public advocacy, and it is clear that adults on the spectrum will do a much better role at the centre of the latter. I plan to embrace my role as supporter and ally, learning when to speak out for my child, and when to listen.

I can’t help but think of Pudding, and how she might feel as an adult if her opinions and advocacy efforts were dismissed in favour of mine. It would be absurd, it would be wrong. Yet this is the experience of many adults brave enough to advocate in a world that doesn’t welcome them or their opinions. It is hard, for us as parents who have nurtured and protected our dependent children to relinquish that role as our children age. I saw it in several families when I worked as a carer. I’m certain that I’ll struggle with it too, as most parents do. My job is to help Pudding become as independent as possible, even independent of me.

Pudding herself as an independent streak running through her. If she is able to do something herself, she will do it, and refuse any assistance. Our efforts as parents lie in encouraging and motivating her to do those things that she struggles with, many of which will be necessary for independent living. Her current educational/therapeutic program features some intensive occupational therapy. She makes a game effort, but sometimes the tasks are just too much for her.

One day last week I collected her from school, and her teacher informed me with a smile that Pudding had been “non-compliant” during a challenging activity. Struggling to find the right words to tell her she needed a break, she told the teacher that she (Pudding) was naughty and needed a time out. Her school has a calm room with a ball pit and swings, and her teacher directed her there for as long as she needed. We’ve established goals for speech therapy to learn the phrases to say when she has had enough, and we continue in occupational therapy to find ways to help Pudding learn what helps her to regulate when her senses are overloaded.

My girl is fortunate enough to be in a place where she can assert herself, and she will be listened to and respected for it. I only hope that I can say the same thing when she gets older. As parents, we don’t have to wait to start listening, not when there are adults struggling to be heard right now. It might be the greatest act of advocacy we can perform.


1 comment:

K- floortime lite mama said...

What a very important post
Thanks for writing
I frequently dont understand why parents dont take the advice of adult auties and aspies who really provide a very important perspective

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