It's OK to Have a Bad Day

Lately, I've been trying really hard to find the silver lining in everything. I tend to be a glass half empty person, just by nature, and so I work hard to see the positive side of things. A lot of the time it's easy. A lot of the time, since I don't allow myself to be felled by something not going the way I imagined, I am able to find the good in our Plan B. Or just letting go of all expectations and finding something that makes my girl happy. I was able to do that Monday when we took a trip to the aquarium, and K literally lasted 2 minutes. We are talking she walked in the door, and then back out. I left B with the husband and my sister-in-law, and K and I trekked over to a nearby (almost deserted) carousel, where she could ride to her heart's content, and come back from the brink.

Was the plan to spend some family time at the aquarium? Yep. Did I care that K and I had to make a quick escape? Nope!

That time away allowed us to return to the aquarium (which had thankfully gotten LESS crowded after our carousel trip and snack stop), and K had no issues.

                                     

                                                It's fun to try and open all the touchscreen things at once!

 Eskimo kissing a baby seal on the screen. Almost too much cute.

She was having fun, and was happy. B was having fun, and was happy. All that matters!

We even all went back to the carousel after, for a couple more rides.

But then Tuesday happened.

K had been asking to go ice skating for a while, so we decided to go New Years Eve day. Now, I am not a skater. My feet hurt almost immediately upon putting them in skates, and I am not known to be the most coordinated person. Still, the kids were excited, so we all went.

At first things were OK. K was having a bit of a difficult time, and falling a lot, but was handling it well.

When things were still OK. 

B was a speed demon with his crate.
A speed demon who didn't exactly look where he was going ;)

When K was done, she was D-O-N-E. She wanted to leave the rink, but I told her she had to wait a second so I could tell daddy we were leaving the area. That request didn't go over well. To make a long story short, there was some scary bolting, some of me running outside wearing only socks, and a massive meltdown (K on the outside, me on the inside.)

I was pretty mortified. I know we're supposed to take it all in stride, and not let "the staring" get to us. I know we are supposed to be OK when things downhill, because our kids are autistic, and they aren't doing anything on purpose (K has told me through tears, before, that she can't control her body".) I know I should have stayed perfectly calm while trying to tear off my rental skates to chase after my kid, and I know I shouldn't have allowed myself to get angry as she stood there screaming at me.

I mean, that's what perfect parents do, right? At least that's what I'm told.

Well, I'm not perfect, so there was panic, and embarrassment, and anger, and me gathering our things to wait in the car until the rest of our party was done skating. There was me telling K I couldn't talk to her right then because I needed to cool off. There was me not being able to find any silver lining, and just wanting to go home and hide under the covers.

And of course I felt guilty. I did pretty much everything "wrong". I know there are some who wouldn't hold back on their attacks towards me because of the choices I made in the moment. I'm sure there's even one or two who would say I did some deep seated damage to my child's psyche. Trust me, those things don't even come close to plain old mama guilt.

It was just a bad day.

But...

We're allowed bad days. They happen. Whether your have a child with special needs or not. Sometimes there just isn't a silver lining, and no way to salvage what happened. Sometimes everything goes wrong, and the day just sucks.

It doesn't make us bad parents. Not in the least. We love our kids. We are great parents to our kids. We are also human. Having an autistic child doesn't give you superpowers. Sorry.

So, there it is. The honest truth. Sometimes you just have to pack it in and remember tomorrow is another day. And that's OK.

What I Mean

Yesterday I wrote how we are in a better place than we were this time last year, which is true. However, in an effort to be totally honest, and not make you think that I discovered some secret to the perfect life (ha!), I want to tell you what I really mean.

1)School. We are definitely in a better place when it comes to K and school. This time last year we were about to start her in the district autism program. Little did we know, we had a big fight ahead of us to get her somewhere that was actually therapeutic. K's brand of autism is such that, right now, LRE for her is really a school considered most-restrictive, but it is 100% what she needs. We have successfully taken away one of the biggest causes of K's behavioral/anxiety issues by placing her in this school. It is a wonderful thing, not fighting your child every morning, or having them come home totally burned out, and in an awful mood. Not fielding phone calls each and every day. We are incredibly grateful she has this placement, but, and this is a big but, changing schools does not mean everything is perfect. It just means her educational experience is going well, but there's a whole life outside of school, and with that we still struggle.

2)Labels. K is "high-functioning" so there are some people who believe I cannot relate to real autism. Or that K is so far above their child on the spectrum, our life is peaches and roses. That what we deal with cannot compare to their own struggles. I'm pretty sick of the comparison, honestly. Like really, really sick of it. The outside-of-school part of K's life is not going well. She is struggling like I've never seen. What makes her "high-functioning", I think, is her verbal ability? Not that she is able to ever tell me what is wrong, and she mostly uses her vocabulary to talk about whatever she is perseverating on at the time, but she speaks, so life is easy peasy.

Obviously.

There is something I want to be clear about, and that is that K does not have Aspergers. B has Aspergers, K does not. She has autism. She might have a different brand of autism than your child, but it isn't Aspergers.

I probably shouldn't concern myself so much with labels, and whether or not they are accurate, but it's hard when people make assumptions, and have a totally wrong picture of your kid. Right now I am just trying to figure out how to best help my child, and we are up against some hard decisions.

3)"Changing how I look at autism has taken away all our problems". That statement is not at all true. Changing myself has helped because I am no longer fighting my kids. I am no longer trying to make them as "typical" as possible. I've realized how they are is how they are, and my job in life is to make sure people understand they are worthy as is. That "passing" is not my goal, because pushing for that can do more harm than good. However, even though I've changed doesn't mean the world around me has changed. Passing will always be the goal for most people when it comes to autism. Every expert will have you therapy your kid to death in order to get them as close to normal as possible. The quest for a normal kid goes hand-in-hand with an autism diagnosis, so it will always be a constant battle to make sure my children don't fall victim to those who cannot, will not, accept them as they are.

However, my kids both still face a lot of struggles. I don't believe autism is a gift, but I also don't think it's a curse. It just is. It's my children's neurology, and how they were born. There are good times, bad times, and in between times, just like in everyone else's life. Acceptance to me is not forcing them to be people they aren't. I'm sure I let them get away with things some people view as terrible, because I am giving in to their "autism", but, really, I'm just letting them be themselves.

Allowing them to just be doesn't take away the anxiety, though. The behaviors. The depression. The struggle to make friends, or the need to be flexible in their very rigid worlds. It just means I am trying hard to help them navigate the world as autistic beings, instead of pushing them to fit in as non-autistic. I don't believe making life more difficult is the answer.

I have found a lot of peace since I've stopped forcing my kids into the car for different therapies they clearly hated, and that weren't adding anything positive to their lives (and, hey, maybe your therapy schedule is working for you, and your kids are 100% happy. That is fantastic! That just wasn't our life, and don't be like me and hang on for too long once things stop working.) Finding peace, and having a peaceful life, are two different things.

Why am I writing all this? Because I don't think I was being honest enough. I think what I wrote yesterday could make some people believe I found some Holy Grail, and that our life had suddenly become easy. I don't want to make people think if they follow my lead, life will be perfect, and the struggles will end. K is almost 10 (in 2 weeks!), so what I share has to be limited. She deserves, and wants, privacy. I know that not sharing everything leaves readers to "choose their own adventure", but I needed you to know that while we are in a way better place than we were a year ago, we still have a long road ahead. So don't think I can't relate if you are going through a really rough time. I can probably relate more than you know.

If you've stuck with me this long, I thank you. I know I have a tendency to ramble. This life is a complicated one. I'm just trying my hardest to make sure my kids know they are loved and truly accepted for who they are, whether we're close to falling down that rabbit hole, or having the best day ever.

Bucking the mainstream doesn't mean everything has gotten easier, it just means I've stopped making things harder.

So, that's our truth, lest you think I've wandered off into some shiny, happy, fairytale land, and can't understand the struggles others face.

I get it. Trust me, I do.