Friday, September 28, 2018

If Only Advocating Wasn't so Darn Exhausting & Uncomfortable...

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Let's admit it, advocating for your child's needs is exhausting and uncomfortable and it's overwhelming knowing where to start when it comes to how to advocate for your child. Here's a personal advocacy story.

Advocacy tips for autism parents

"I will be looking into this..." he says.

Thank goodness it's just a telephone call, because I certainly cannot roll my eyes hard enough as he spits out that sentence in the most confident, almost cheerful, tone he can muster.

But I don't believe him.

Not one bit.

My husband, on the other hand, is hopeful that things are being looked into as promised.

But me?

I'm a bit more cautious. Pessimistic even.

I mean I've heard lines like this before and in the end, nothing really happens.

Maybe if my son was more aggressive or a flight risk, I wouldn't be where I am at the moment.

Maybe if my son had more behavior issues in the classroom, I wouldn't have to be making this phone call right now.

Maybe if my son had meltdowns at school every single morning like he did two years ago...

I could go on and one with these maybe ifs, but the reality is my son isn't aggressive or a flight risk or a problem kid. He's sweet and quiet. He works hard. He's smart and goofy. He's probably the first one done everything asked of him in his class.

But that doesn't mean he doesn't struggle.

He still deserves accommodations and supports to help him be successful at school.

I am afraid he is flying under the radar because he's "high functioning" - and don't even get me started on that term, but that's for another time, another day.

It's not okay for his needs to be pushed aside because of budget cuts, priority, and whatever other canned response gets tossed my way.

It's not okay that I am back at square one trying to advocate for his needs. He's only been an identified student at this school since Kindergarten and he's in grade four now.

It's not okay that I have to be that parent just to get things in motion year after year. The squeaky wheel gets the grease after all, right?

Honestly, it's exhausting.

My son's going to be advocating for himself one day and you know what?

I'm scared for him.

I'm scared for his future self that has to constantly battle the system.

I'm scared that he too will be constantly exhausted.

I'm scared that he will decide that the fight isn't worth the exhaustion or the frustration that comes along with advocating for his needs.

My sense of worry kicks in on this thought and is often the reminder I need to push through the uncomfortableness of it all.

Because yes, I need to be the jerk of a mom who is constantly on the school's case. The mom that teachers warn fellow teachers about. I promise I'm still a nice person though. I'm just a pain in the butt sometimes!

And yes, I need to make these phone calls to the school board even though it often seems like a waste of time. At least it puts me and my son on their radar.

It's important to me to show my son that advocating is hard, but if we want to see change, it needs to be done. If he can see that I am a strong advocate on his behalf, then he can hopefully channel that energy and become a strong self-advocate for himself one day.

So the moral of the story?

Don't give up. Advocate hard. Be a pain in the ass. Because your child is watching you and depending on you.

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Advocacy tips for autism parents