Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

A is for Advocacy

with 13 comments

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 glad TGPA 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.

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Written by Spectrummy Mummy

September 26, 2011 at 8:19 am

13 Responses

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  1. Great post! I too have been reading the series on the TPGA, and my emotions are all over the place. On one hand, who am I to speak for my son? On the other, I’m the only one who can help him get his point across to get others to understand him. But he is only 5. How will he feel in 10 years? 20? I don’t know. Everyone’s voice is important in this conversation, no matter how that voice gets out.

    akbutler

    September 26, 2011 at 10:23 am

    • Exactly- we just need to make sure that all of those voices actually get a platform to speak.

      Spectrummy Mummy

      September 26, 2011 at 11:02 am

  2. I too have been following the dialogues, although I admit the stabbing is starting to get on my nerves. But it definitely has made me think. A few followups to it had me branching off to three or four different blogs catching correlaries, one of which was the “Wandering” video done by Landon Bryce on Thautcast.com. That had me thinking all weekend about some of the things my daughter escapes from in her life that she’s not verbalizing. Not that she is a wanderer, but just the idea of something bothering her that she’s not able to articulate that I unthinkingly force her to accept. . . like my singing.

    Here’s the video link, if you haven’t seen it. http://www.youtube.com/user/thautcast?blend=1&ob=5#p/u/0/MXfWoOQpEDU.

    *I* liked it, for whatever that’s worth.

    Jim W

    September 26, 2011 at 10:35 am

    • Oh, Jim W, that video took a LONG time to download! It was worth it though. Here is a direct link for anyone else interested: http://thautcast.com/drupal5/content/action-alert-autism-and-wandering

      It is interesting. Pudding isn’t a wanderer as such, but the one and only time it happened, it was a VERY bright sunny day, at a hot and crowded park. She has problems with her vision that seem to be intensified by too bright light. She has a tendency to withdraw when overwhelmed by her senses, which is her way of dealing with things. Funny you should mention singing, Pudding can’t abide my (admittedly tone-deaf) singing!

      On the other hand, I’m not sure that having the diagnosis necessarily means that the problem is then ignored, though (sadly) that will certainly be the case for some. I also don’t have a wandering child near a busy road or body of water, so that is a luxury in itself.

      All in all it is a huge grey area, and it is scary when the very things that are supposed to protect our children end up placing them in significant harm. Once again, I have more questions than answers.

      Spectrummy Mummy

      September 26, 2011 at 11:11 am

      • i had the darnedest time finding the link to the video on his actual page. Thanks for posting the direct link. Sorry for the download time.

        Jim W

        September 26, 2011 at 1:14 pm

        • No problem. Unless you’re responsible for the speed of the internet here, then I’m mad at you.

          Spectrummy Mummy

          September 28, 2011 at 10:33 am

  3. Btw, I’m really excited to see the K, Q, X, and Z posts.

    Jim W

    September 26, 2011 at 10:41 am

  4. I guess it’s hard to know when to let our kids take front seat, even if they might not be as eloquent as we think we could be in their stead.

    Somehow, though, I guess we’ll have to let them do it anyway, simply because they will be better people just for doing it- regardless of the results.

    It won’t be easy…

    Rachel

    September 26, 2011 at 11:12 am

    • Amen to that. Nothing about this parenting game is easy- we really shouldn’t be allowed to do without a course and test first!

      Spectrummy Mummy

      September 26, 2011 at 11:16 am

  5. I so know what you mean here. My son is almost eight and he’s asserting what HE wants. And sometimes thats not necessarily what I want or think is best for him. It’s been going well so far but I can see potential struggles as he gets older. A point well said–for our children to be independent of us. We work so hard advocating for them that sometimes I forget what our end goal is. Thanks for the reminder.

    Lizbeth

    September 26, 2011 at 5:30 pm

  6. Wonderful, wonderful post! Thank you for reminding us to listen to our children. That they do know what they need. That they are advocates whether they are five or twenty-five. We all work so hard to help our children “find their voice” you remind us that we need to let them use it once they have found it. Thank you!!

    Cheairs Redefining Typical

    September 27, 2011 at 5:51 am

  7. So excited about this series! Great starting post! You are a wonderful writer and a very smart mama who’s making us think. I have a great respect, right along with you, for those with autism who are brave and generous enough to share their viewpoints and experiences with the public in the form of advocacy or not. It helps to have that perspective in parenting a child who cannot effectively yet communicate with his/her receptive and expressive language. In our house, I’m still in the state where I’m not sure what my son is trying to tell me all the time, so clearly, I must remain his voice. As he gets older, I think the challenge will become to know when to start fading back and letting him have his independence. I’m not sure I will recognize that time, but I definitely will when he starts telling me! 😉

    solodialogue

    September 27, 2011 at 9:54 am


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