Funny, that word is.
Advocate – as in someone who advocates
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.
#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.”
“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.