This Mom is Exhausted

Image is of myself with long brown curly hair, black shirt, pointing to the water, with my son in glasses.

(Note: I am a work in progress, and I am learning more every single day. Please note, if you see references in this post that feel ableist, that I am learning, and continuing to improve my lexicon when it comes to respecting the disabled community.)

Being the parent of a neurodiverse & disabled child is exhausting. Sometimes, I sit and cry, because it's just so exhausting.

Stop right there.

I'm not exhausted because of my child. He's an incredibly pleasant, fun, affectionate and generally 'easy' kid to be around. He has his own needs and challenges, but that's okay with me. That's not what makes it so exhausting to be his parent. The part that brings me to tears and makes my chest ache, is the rest of society. You want to know why it's hard?

It's exhausting to go to an IEP meeting, where you have to fight for your child to have a passable education, because all they can see are his disabilities. They try and force him to do the same three menial tasks over and over again, until he fulfills them in the way they think he 'should'. They see him as the lowest common denominator. They ignore his abilities until you shove them in their faces. Yes, he can. If you keep trying the same thing with no result, that is a you problem, and not a him problem.

It's exhausting to go on a field trip where nobody knows or cares about your kid. You walk past a group of students having their picture taken, and nobody invites your child to participate. Nobody introduces themselves to you, or your son. Nobody cares. He is a nobody in their world. You keep a fake smile on your face, while your heart breaks for the fact nobody has basic human respect for your child. Because he's 'different'.

It's exhausting seeing people act like they're afraid of my child. Afraid of how he will react. Afraid to look at him. His differences make them uncomfortable. Yeah, go ahead and watch him flapping. He's just communicating. Would you turn and face the other way when someone is talking to you? I doubt it. He's talking to you when he's flapping and shaking his head. Stop acting like it makes you uncomfortable. He's not wrong for being who he is. You're wrong for being uncomfortable with him being himself.

It's exhausting when you find out, two months into the school year, that your child isn't even allowed to be with his supposed 'inclusion class' during one of his few inclusion activities, because of 'scheduling'. Because, nobody ever bothered to keep you in the loop, until you bring up his lack of presence in pictures. Because, people act like the disabled should just be happy with whatever pittance they receive.

It's exhausting that nobody in the PTA gives a crap about making sure disabled children are included in activities. Their idea of 'inclusion' is to say, go ahead and pay the $25 and come anyway. Despite the fact that there are absolutely zero activities your child could physically participate in. Lots of talk, and absolutely zero action. Talk does not equal inclusion.

It's exhausting to watch the never ending parade of Autism fear mongering that causes people to hold onto their false notions about Autism. Hey, my son is mostly non-speaking and has physical disabilities. Don't you dare call him 'low functioning'. Don't you dare suggest he's suffering. Don't make assumptions about my son, because you choose to live in fear of anything different than yourself. He doesn't need to wear a flashing neon sign proclaiming he is Autistic. You should learn to respect differences, without needing a sign proclaiming them.

It's exhausting to watch person after person turn a blind eye to the lack of support to the disability community. There will be people who  fight all day long for the rights of people of color, immigrants, women, and LGBTQ+ (who all rightly should be fought for), and in the same breath, they will use disability related slurs and ignore the much needed plight of the disability rights movement. Even among those who consider themselves allies in justice, ignore the rights of the disabled.

I'm tired. My heart hurts. All I want is for the world to see the amazing person I see. I don't blame him. I don't blame 'autism'. I blame society. And, I won't quit screaming; I won't quit swinging, until I see a world that embraces people for who they are, and where they're at.