Wednesday, June 25, 2014

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.

Monday, June 16, 2014

She's In!!!!

I spent last night in the ER with a kidney stone (boulder?) A tiny little thing that made it feel like my left kidney, and everything below it, had paid $20,000 to be killed off on Game of Thrones. I had a real moment of wondering how much Vicodin is too much Vicodin.

After trying to save myself the $150 ER copay, I gave up around 2 am and drove myself to the hospital. It probably wasn't my brightest move, but I really didn't want to load the kids in the car, and mess up their schedule for today. Thankfully, since I showed up shaking, in excruciating pain, white as a ghost, and dehydrated, the ER staff took pity on me and I was immediately hooked up to good meds and hydration.

It still amazes me that something so small (I have yet to actually see a kidney stone with my own two eyes), can make me feel that bad. It is better than all the crazy alternatives my paranoid mind usually goes to when faced with that kind of pain, though.

I was sprung from the ER around 7, and was home around 8 (after stopping at the store for some Gatorade and Advil, because the answer to the Vicodin question is it just doesn't help this sort of pain at all, and the doctors don't send you home with the good stuff.)

The fact is, I've been under a boatload of stress, lately. K's school situation for next year, or lack thereof, has definitely taken it's toll. My auto-immune issues flare up, and I just get sick like it's my job.

This morning after returning home, and before crashing on the couch, I had a conversation with another school that was offering us a program that wasn't right for K. I drifted off to sleep upset, and not wanting to face the world.

Then something magical happened. A few hours after falling asleep, my phone rang. I immediately recognized the phone number as the one school we really wanted for K. The school that seemed like the light at the end of the tunnel for us. A place that could be life changing for K. The school that had already told us there wasn't a spot for her at this time, and had been the cause of me breaking down into sobs these past few weeks more times than I'd like to admit.

I almost didn't answer. I was just too tired and too sick to hear them tell me, definitively, it was over. There were no more "maybes" to be thrown out. I just didn't have it in me to hear that, or to cry anymore, so I almost let the call go to voice mail.

At the last second, I answered. I braced myself for more bad news, but instead I was greeted by an excited voice on the other end, telling me there was good news! They had a spot for K if we still wanted it.

If I could have jumped through the phone and hugged this man, I would have. I thanked him about 20 times too many, and could barely hold an intelligent, or intelligible, conversation. I was too excited, almost not believing this was happening.

I really cannot convey the weight that has been lifted. Or how incredible it feels to not have to trudge to programs we know aren't a good fit, but might be our only options. To finally feel like something is going our way! Especially after last night, we really needed this!

Hope (real, live, hope!) has been handed to us. To K. And you know what? We deserve it!

So now I can go back to my couch  nap and look forward to waking up, instead of being afraid of facing the world. That's a really good feeling.