Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘advocacy\

Wordless Wednesday 14 Jan 14

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I saw this in Edinburgh, and thought of you!


Written by Spectrummy Mummy

January 15, 2014 at 7:00 pm

Self Advocate

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At the doctors with Cubby, I mentioned to her what a wonderful self-advocate he is.  She had laughed, he had winced, and told her it was too loud.

“And I don’t like people touching me too!”

A statement of fact, but also a warning to the doctor who was about to do just that.  I marveled at him, this little wonder.  It comes so easily to him.

For Pudding, it has not been so easy.  She has always had her own mind, and known her own mind, and every day is a step closer to better expression.  Language is giving her the words and phrases to let us all know what she needs to be.  At her feedback session today, her OT told me how she now makes all her own choices for self-regulation.  I marvel at her.

This kind of advocacy, self-advocacy, is what I most want my children to do.  And yet…I’m only now learning to do it for myself.

This year has been a tough one, with a lot of changes and challenges.  I went to the doctor last week to talk about some of those challenges.  Back in March I wrote a post about a difficult time I was having.  I’d ended the post hopeful that things would get better.  And they did, but I haven’t.

I haven’t really got over the violent crime that happened in our front yard, and even though we were at a safe distance, I replay over and over what might have happened if they were playing there as normal.  The doctor informs me this is PTSD, which lately is manifesting in panic attacks.

On top of this, I’ve always had some social anxiety.  I’m the kind of person who is fine in small groups, but gets overwhelmed by crowds.  My new job puts more social demands on me than anything I’ve done before.  Whereas I’ve been able to avoid many social situations before, now I have to take responsibility for them, and at times it has been overwhelming.

I’ve carried on, because there is no reason why this should be so hard for me.   The doctor and I talked about some of the traits I have in common with the children.  But we also talked about how I give the kids support not because of their diagnosis, but because of their need.

It is time for me to start talking about what I need.  Like time alone to recharge after big events.  Such as knowing that I won’t be required to speak in front of an audience.  Perhaps being okay with the fact that I’m more comfortable writing than speaking.  Or just acknowledging that I can’t function normally if it is loud, or busy, or people are too close to me.  And then playing to my strengths, rather than my weaknesses.  You know, just like how I preach for my children.

It wasn’t easy for me, but I approached my boss.  He is awesome (and I’m not just saying that because he sometimes reads this!) and willing to accommodate my needs so that I can keep doing this job I love, but pushes me in new ways.

I think that with that support I can go from strength to strength, because I’ve seen just that with Pudding and Cubby.  Maybe one day I’ll learn to advocate like them too.

Written by Spectrummy Mummy

November 29, 2012 at 8:19 pm

A is for Advocacy

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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.

Written by Spectrummy Mummy

September 26, 2011 at 8:19 am