Thinking about … advocacy

As the parent of special needs kids, I’m often asked about advocacy.

How do you do it?

How do we fight for [insert kid’s name] at school? In the community?

Where do we turn for more help?

But that’s not fair, how can we change it?

That last one? That’s a biggie. Because it is easy to complain about all the little things that are unfair when you have a special needs child. Sometimes you feel guilty about it, but the fact is,  you don’t feel like anyone is ever listening to you anyway, so why not? Why not complain? Show of hands, guys, and be honest: have you ever felt like it was just you and your family against the world?

You can’t see it, but my hand is raised high.

That’s one of the ways advocacy comes into play. It forces you to look outside your family and think about the issue and what you want to do about it. You might want to change your child’s IEP – who do you talk to who will explain it to you? Do you have an education advocate working with you and your child? Maybe it’s time to consider one (ps – this is something I and some local advocates do and I’d love to share information with you.  Send me a message!).

Maybe, like us, you’ve been affected by a larger issue. In our case it was restraint and seclusion. It was no longer some unknown catch phrase when it was our little Logan being placed in a rifton chair constantly. But what were our rights? What could we do? Lots of things.  I contacted our advocate, plus I contacted state-level folks. When the answers weren’t coming fast enough, I contacted our superintendent. I contacted a lawyer. I spoke with friends and family. I researched and found out that this was a much larger issue.

And that, right there, was the start of advocating for one specific cause. For us, it began with advocating for our child and has led to letters written to legislators and other persons in a position to effect change. It began with something inherently personal, inherently emotional, and led to a passionate stance on something that I can be a personal advocate for – the restraint and seclusion movement.

Spend five minutes with me and you’ll see I have lots of little things that I am passionate about, that I advocate about. See, advocacy doesn’t start large and organized, it starts with something small, something personal, something that you can feel passionate about. And it grows. As you find ways to become involved in advocating for something you believe in, you find ways to become involved outside of you and your own initial arena. In our case, it has simply meant speaking openly about what happened to our child and what we want to change as a result.

Advocacy starts with one person deciding that they need to make a difference, make a change. And it can start with you.

What are you passionate about? What inspires you to act? To care?

I’ll be posting more on this subject, and have decided to add a page to Kat’s Cafe about the topic. Stay tuned to see what you can do.


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Filed under Advocacy, Special Needs

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