Day #120 – Advocate, Part 2

Funny, that word is.

Advocate – as in someone who advocates

Or

Advocate – as in the action of advocating

Nerdy stuff, I know – but what is the power of being an advocate who advocates?  Yesterday I wrote about telling Tucker – today and tomorrow I write about what has happened since then.

I had a couple of people email me yesterday asking why I would even tell my child.  Especially since he is ‘high-functioning’ (again – I strongly dislike that label…but it is important to note here).  Why?  Well…thus comes the challenge of not having a child who has ‘classic autism.’  All of us on the spectrum have our own unique challenges.  I become very frustrated when parents within the ASD community turn on each other.  I once read a blog where the author essentially wrote, ‘Oh…spectrum….that’s where your child is?  I know exactly what that means.  Me?  My child has classic autism.’

Want to know what’s different about my Tucker?  You wouldn’t know.  It’s not obvious.  He doesn’t look a certain way.  He doesn’t rock (well…not often, anyway).  He can talk (although…quite peculiar at times).  This makes our challenge different – but still a challenge.  How do we get people to understand that his odd behaviors are real and not simply him being a sh*thead? It’s real.  It’s very, very, very real.

Maybe that’s why it’s even more important to teach him to advocate for himself…and for others. Ultimately, he will be the one responsible for creating change.

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#1 Reason to teach him to be an advocate?  So he can advocate for others.

He can tell the story of what it feels like to have autism.  In the study that I wrote about yesterday (Day #119 – Advocate) the researcher asked him if he knew other children with autism. His response, “Yes, and I know many kids.  I help them.  I understand them.  Sometimes I let Ms. Brandel [his special education teacher] know when something is about to happen.  I can often help explain things to them.  It’s weird…it’s like I have the words they are missing, so I just help them out.”

This is why I teach my child that he is differently, perfectly abled. He knows he is able to help others.  It’s all in the semantics of how we talk to and about each other.  Be kind.  Always.  Be positive.  Always.

#2 Reason to teach him to be an advocate?  So he can advocate for himself.

We are very lucky that Tucker has learned (albeit at times in tape recorder like form) to speak for himself.  He is beginning to sense what he needs and how he feels.  This past Sunday, worship was awful (read Day #117 – Osmosis).  It is also the very first time that he said to me, “Mom, I think I’m tired.  I think this is what tired feels like.”

Yes, he was tired.  I smiled at him and simply said, “Yes, that’s what it feels like.”  You see, when you are a spectrum mama you learn very quickly that there is NO point in saying things like…

“You think?!?!” (in sarcasm)
“Of course, this is what happens when you don’t follow your schedule like I tell you.”
“Duh.”
“Look at your eyebrows!  I’ve always used them as an example for when you are tired.  Will you believe me now?”

Nope – none of those things are useful.  They are, however, snarky.  Maybe everyone should love someone with autism…then people would learn that snarky is never helpful.  Like, never.  Never, ever.

So it goes with advocacy – learning, growing, and creating change a little at a time.  By the time Tucker reached 5th grade he was ready to tell his classmates.  We celebrated with blue cupcakes on World Autism Awareness Day (which happens to be on April 2 this year).  He called his grandparents and asked them to wear blue for the day, for him.

Tomorrow?  What’s happened in the past year…it’s great stuff…REALLY great stuff.

Stay tuned…

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6 thoughts on “Day #120 – Advocate, Part 2

  1. While reading your blog entries, I nod my head and acknowledge in my heart the many truths you uncover and realities you explain — and I can imagine all the other people who are doing the same. You are an advocate, absolutely. You’re also a leader, a visionary, an optimist, a role model, and so much more. I’m learning so much about sensory processing, autism, parenting, teaching, and how to more effectively interact with and support others. You are rocking this 366-day journey (and the life-long one of which it is part)! Thank you seems so inadequate to say, but I mean it. I’m grateful for your friendship and lifelong learning/teaching. I love you!

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    • Well…hello tears – nice of you to make your presence known after a 10 hour hiatus. I love you friend – and you are such a huge part of this. You helped me to grow and gave me confidence. YOu’ve loved me through good and bad and somewhere in-between – I am SO blessed by your friendship and support!!!!

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  2. I am a parent of an adult with autism. Helping my son understand himself and teaching him to advocate for himself was crucial. In college, he had to go to each instructor, tell them about his disabilities and what help he needed. Because he understood how he learns and what accommodations he needed, he was able to graduate with an associate degree from a small technical college.

    Now he is learning new skills in the working world. He told an employer “this is different from school and I am still learning what I need to be successful, but this is what helped me this week.” We have found that the working world may or may not have any clue about disabilities and that his understanding of himself is even more critical than it was in college.

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    • Mary,
      I cannot thank you enough for this message!! THis is what we have been working towards for 10 years. It was hard not ‘letting’ him really have a childhood – but I knew we couldn’t allow that childlike behaviors or language. He had to learn early on how to speak correctly. I knew ‘breaking’ habits for him would be 10x worse. I constantly hear that he sounds like a 50 year old in a 12 year old. Sounds like your son was much the same. I would love to hear more about how your son advocates for himself in the workplace. A friend has asked me to write a post for HR folks – knowing that the skills that some people with autism have (extreme focus, detail oriented) are perfect for so many jobs – but how do HR people account for odd behaviors/speaking in interviews. Tough question – but an excellent, necessary question (I think)!

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  3. Pingback: Day #327 – Indexing | 366 Days of Autism

  4. Pingback: Day #351 – Self-Advocating and Veto Power | 366 Days of Autism

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