Tuesday, July 16, 2013

The End of an Era...

For as long as I can remember, or, as long as K has been in school, we've had issues. From her behaviors not being understood, to her off the chart anxiety. Social issues. Extra-curricular failures. Fights over homework that could go up against the best war movies. Or actual wars.


School was always the fuel on the fire. Something we couldn't escape, no matter what accommodations were made, how long the IEP was, or what therapy was tossed in the mix. Every morning I had an upset little girl who sometimes had to be physically put in her van, and every afternoon I had a child who stormed into the house, angry at the world, and set off my the simplest things.

Each August my own anxiety would rise when I saw the back-to-school commercials. Our break had been far too short. Sure we had ESY, but a few hours a week was nothing compared to the actual school year. I tried to remain positive. Maybe this was the year things would turn around. Maybe maturity would be on our side. Maybe my kid would make a friend she couldn't wait to see everyday, and that would get her on the van. Maybe we'd only have one IEP meeting the whole year, instead of one almost every month. I wanted things to go well. I wanted K to be successful. I wanted to experience school like every other parent, and not like I was looking down the barrel of a gun.

Then this year happened.

Third grade. When everything changes. Students are expected to be independent in their school work. Socially, things start to change. Kids get mean years earlier than when I was growing up. I really can't explain the pain you feel when you go to the school to drop something off, and catch a glimpse of your child eating lunch in the cafeteria, alone. At a table by herself. It's an image I won't soon forget. My heart still breaks thinking about it.

And that was the most benign issue this year presented.

A lot happened this year. So much went wrong.

Very, very wrong.

And we knew we had to get K out.

With a lot of help, and after many sleepless nights and anxiety-ridden days, we finally did. We were able to move K to a new school that held so much promise. It took me a while to relax. To say I am a worrier is an understatement. Every time the phone rang those first few weeks, my heart stopped.

But, gradually, the worry got less. K was happy. She didn't even complain about getting up early to catch her van.  I knew she would be OK at the new school, and started praying to the universe that our district would allow her to stay.

Last night it really hit me. Life isn't perfect. A new school didn't magically make K's autism go away. We still have our really trying times.

But, one problem we don't have?


And that's huge.

I no longer have a child who is a constant ball of anxiety, living in a perpetual meltdown. For those six hours every day, I'm not curled up in a fetal position, crying, feeling desperate.

For those six hours a day, my kid is happy.

It's an experience I never thought we'd have.

Like I said, things aren't perfect, but they are a hell of a lot better. It's a whole new world of school not being a catalyst, or something we all fear.

And it's about time. 

Saturday, July 13, 2013


Hmmm, where do I begin?

Today...did not go as planned. The kids were invited to a birthday party at a local glow-bowling place. The last time we were there was for B's birthday in the fall, and though we've had issues in the past, K did awesome. So, I assumed today would go just as well.

And then the universe laughed at my assumption, and dumped a whole pile of steaming crap on the day.

First, K had to wait to bowl, since her name was the last one on the screen. This triggered the descent. Then she thought she was the worst bowler ever. Then her fingers got pinched between two balls. Then she got a few gutter balls, even with the bumpers. Then the pizza didn't look right.

There was screaming, crying, throwing of bowling shoes and glow necklaces. There was kicking of arcade games. There was trying to run away from the bowling alley, itself (which is next to a divided state highway, with no lack of cars).

She thought because the other kids were having fun and laughing, they were laughing at her.

She thought that because she always causes problems (not being a good enough bowler was the "problem"), I hated her.

She thought the bowling alley wanted her to lose.

She wanted to just run away forever.

Spiral, spiral, spiral.

And one very helpless mama.

My husband was out mountain biking, and sans phone, so I made a frantic call to my mom. B was having so much fun, and I didn't want to force him to leave. I needed a huge favor. I needed her to come get K.

Thankfully she did.

The worst part is, even in the midst of the meltdown, K so badly wanted to stay. She couldn't calm down, but she also didn't want to leave. She wanted to enjoy being there, but her brain just wasn't having it. I knew she would be better off going with Grammy.

When I picked her up later, she was still upset over leaving the party. She missed the cake (an ice cream cake, so I couldn't even bring a piece home). Sure, she got McDonald's, ice cream, and saw a movie, but she missed birthday cake. The other "fun" stuff didn't matter.

Perseveration, we know thee well.

I debated writing this post. K's personal life should be sacred. Should I share how hard today was? But the thing is, I've been talking a lot about acceptance, and I feel that sometimes any message of acceptance can come across as loving everything autism brings to the table. It's a slippery slope. I want K to love herself. I don't want her to hate life because she is autistic. I want her to focus on her gifts, and understand what a wonderful person she is, and not feel broken because of her neurology.

But days like today? They suck. Hard. I couldn't do anything to help my girl. My anxious, crying, stimmy, crawling out of her own skin, thinking the world hates her, girl.

And, you see, I don't accept that. I want to do everything in my power to change those feelings. To make her happy. She'll always be autistic, but I won't sit back and watch my child be in that much emotional pain, saying I have to accept it, if I am to accept her.

I don't want to change K just because she's autistic, and I want her to love herself as much as I do. But these bad days? These horrible days when my child tries to run away, and thinks she's an awful person because she isn't a top bowler?

I don't want anyone to mistakenly think I love or accept that.

Friday, July 5, 2013

Really, it's OK

I grew up going to our town's 4th of July parade, and once I had children, I was excited to share the experience with them. When K was little, she liked the parade. She would stand watching all the trucks go by, totally enraptured. She'd dance when the bands walked by, collect the candy thrown from the passing floats, and genuinely had a good time.

Until one year, she didn't.

Two years ago she had camp on the 4th of July. I had given her the choice of attending camp, or coming to the parade with us, and she chose camp. Heck, *I* would have chosen camp. They had their own festivities there, and when I say she loves her camp, I mean it.

Last year, I decided not to enroll her in camp for the 4th, because I wanted her to be home with us. Except, she wasn't having it. She couldn't take the heat, or noise, or waiting. She ended up staying with my mom at her house until the parade was over, and I felt bad I hadn't just sent her to camp, after all.

This year I gave her the option of coming, or staying with Grammy. Let's just say, that choice was a giant trigger. Making any decision is always overwhelming for K, so I finally made the decision for her when I saw how hot it was going to be. To say this kid has an intolerance to heat is an understatement, and I knew we'd go from zero-meltdown before we even made it to our seats. She was relieved, I think, after I told her she'd just be staying with Grammy, and I knew it was the right choice.

So, yesterday morning I dropped K off with my mom, and headed with B to the parade. He and my niece had a lot of fun together, especially collecting all the candy, and K had a relaxing morning playing on her iPad somewhere cool, and fire engine free.

Now, I suppose I could write about how heartbroken I was that K wasn't at the parade. Make a big deal out of how autism robbed us of this experience.

Except, it would be a lie.

I won't be heartbroken because she can't sit at some parade. If we always look at what our kids can't do, and equate it with heartbreak and sadness, we are going to end up equating them with heartbreak and sadness, which, no.

Just, NO. 

If tomorrow we head out to the fireworks, and decide that it's not something K can handle, it will be OK. I'll happily miss a fireworks show so I can snuggle with my daughter, and watch Pound Puppies or Littlest Pet Shop on Netflix.

And the last thing I'll be is sad about it.