Thinking it Doesn't Make it So...

The other day I was thinking back on K's end of year performance with her Adaptive Dance class. It made me smile, how she took her part so seriously. How proud and excited she was to "lead" the group. How she got everyone to bow at the end.

K is a verbal kid, but rarely, if ever, will she speak up for herself. There have been times in dance class when she's had a really rough time. Something bothers her, words fail, and she just walks out in tears. 

It's not because she doesn't enjoy class. It's not because we are forcing her into an activity that just isn't the right fit. It's because verbal doesn't always equal having words. She still has language deficits that make it near impossible for her to say what she's thinking, sometime.

So behaviors happen, and I am sure those around us are thinking, why does her mother drag her here every week if she's not happy?

The truth is, I don't drag her anywhere. Anyone who knows K knows that's impossible, anyway. If she hates something, she won't do it. I am certainly not driving an hour each way, early on a Saturday morning, for my own benefit. She wants to go. She wants to be part of the class. Sometimes things get hard because of how her autism affects her. Because of the language issues being autistic brings to her table. Language issues that fuel her anxiety, and lead to meltdowns. Everything is intertwined.

I'm not saying that in a derogatory way, it's just reality. Each autistic person has their own strengths and weaknesses, and I won't deny that being autistic comes with challenges. There are things I love about K that I know only exist because of her neurology, but turning a blind eye to the other side of that doesn't help anyone.

There's been a lot going around, lately, saying what autism is, and what it isn't. While I agree with some of it, I'm not on board with it all. I think there are a lot of things that go hand in hand with autism, and some of those things make life a bit more difficult for K. Even when she's doing something she loves. Seeing that, understanding that, will help me in situations like dance. I can pass along what I've learned...what I've seen...and hopefully ease the burden for K.

Her teacher knowing that she so badly wants to be given extra responsibility, but doesn't know how to ask, will help. Him understanding that sometimes K just needs a break because she becomes overwhelmed will help. Knowing what doesn't help, like trying to cheer her up when she's devolving into her own, personal, sensory nightmare, is also important.

I want to walk in on that first day and tell him how proud K was during the performance, and how much we want her to keep that feeling. K can tend to get lost in the crowd, and it's our job to help her find her place, and know that she's valued, loved, and understood.

I guess the moral of my story is, I don't force K to do anything she doesn't want to do, and, yes, like it or not, being autistic sometimes makes even the things she loves, hard. That's just reality.

Just her flavor of autism.

Just K.

Too Bad, So Sad?

Fair doesn't mean everyone gets the same thing, it means everyone gets what they need.
(photo credit) 

Another Disney post made it's way around social media yesterday. I read it, but didn't pass it around, myself. I figured I'd beaten that horse to death, and I don't seek to be purposely annoying. People know my stance, and since all my (one-way) communications with Disney fell on deaf ears (hey, I'm not a super blogger that's going to tow the Disney line just because), I basically let it go...for now.

So, yeah, dead horse, except...something I read made me really angry. A comment made by another parent, who basically said if your kid can't access Disney like everyone else, then they just shouldn't go. I'm paraphrasing, here. There were really long comments, listing all the reasons why kids like mine shouldn't be allowed(?) to ever go to Disney, and that, sure, they'd miss out on certain experiences in life, but people with neurological or medical issues don't deserve special accommodations, so they just shouldn't go. It's just not fair to everyone else. Oh, and we are being irresponsible parents taking them, knowing it will be hard.

Now, I'm no shrinking violet, and in non-shrinking-violet form I responded. I wasn't especially nice in my comments back, for which I did feel a tad bit guilty, but I suppose when you know you're fighting a losing battle (kindness and compassion just can't be taught), you don't feel the need to play as nice as you would otherwise. I will admit I took the comments personally. Maybe they weren't meant to be taken as harshly as I read them, but the message was the same, whatever the tone.

I am sure a lot of people feel the same way as this commenter. That because my kids face certain challenges when visiting someplace like Disney, going there should be off the table for our family. Never mind that my kids, especially B, want to go, and ask to go, they just have to miss out because they aren't typical.

People being OK with any form of discrimination is bad. Teaching kids that everyone needs to receive the same exact thing, or life isn't fair, also bad. Sometimes there are individuals who need more help than others. Is it their lot to just hide away at home? Miss out on life? Live on the fringes of society, because they don't deserve to be accommodated?

This type of thinking goes against everything we say we want, when we talk about inclusion. It's separating people. Saying there are those who don't deserve happiness alongside their typical peers, because they access things differently. It's taking a group of people and seeing them as less. As not worthy. Only everything I'm trying to fight.

My kids work hard to fit into the world around them. Especially K. I mean, that girl works her tail off just to make it through the day, and I don't think it's wrong to expect others to work just a fraction of the amount to accommodate her, at times. I don't think I should feel guilty about wanting those accommodations. I don't think expecting human beings to show a little compassion for others is beyond reason.

So, to those who say I should just keep my kids home (unless I want to give this blog an over 18 rating, I can't say how I really feel), just know, we refuse to hide. I refuse to limit my children's lives. I refuse to give in to those who are mean-spirited, and who were actually born without an empathy gene.

All of this goes far beyond Disney, and it doesn't just have to do with autism. Every person on this earth deserves to be treated with respect, and dignity. Telling them to just stay home, well you might as well tell them to just not exist. None of us should stand for that.