Saturday, December 28, 2013

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.


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.

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