10

K's birthday came and went. She was excited for double digits, although sad she would no longer be nine. Each year she cries a little, missing the age she was before. The epitome of not liking change. At least 10 is special. She had a fabulous (and I mean, fabulous) birthday party, complete with a man who brought all her favorite animals, a My Little Pony cake, and a sleepover with a couple friends. Her first real sleepover. Something she's seen on TV, and something she desperately wanted. Make-up. Nail polish. Snacks. Hanging out in our playroom, sans annoying parents. I am pretty sure there was a My Little Pony episode she used to plan the event (not kidding.)

K thought the day was perfect. The sleepover, perfect. I chose girls who are nice to K, and ones I knew wouldn't cause tween drama. Sure, there were times K was off doing her own thing, but there were also times she was totally engaged with her friends, as they slathered on pounds of make-up, or watched TV. The next morning she happily sat and did Shrinky Dinks with one of them. K declared it her best birthday, ever, and it was. She was happy, like really happy, which is something I don't often see.

Of course, I had a more difficult time with her turning double digits. Eight years until 18, kept going through my head. Where are we? Where are we going? How will we get there?

She's still young, people tell me. She is, but these past 10 years have flown by, and we are still gasping for air at times.

She's doing so well, people tell me. Except, they don't see when she's not doing well, and I am not one to overshare.

We have 8 short years until she's 18. We have puberty. We have the hardest years of a kid's life ahead of us, and it scares me. I know I'm supposed to be positive all the time, but the older K gets, the easier it is to let doubt take hold. There are so many things K wants out of life, things she wants, but the way she is wired makes her path so hard. It just does. I know there are some who don't want to hear that, but it's the truth.

We recently had some new testing done, and it makes me sad. Let's just say, being treated a certain way, and basically traumatized by certain people (you can guess where this all happened), have killed any ability she has to cope. She has so much potential, but reaching it? Not easy. Finding good school placements? Not easy. Having faith it will all be OK? Not easy.

I know these tests don't define K. I know they aren't always accurate. What the psychologist saw was a true representation of K, though, beyond academic skills, which can wax and wane. Beyond any box she checked off, or circle she filled in. She saw K as a person, as we see her, and that part is the most important. It's what gives us the most accurate information.

Her doctor said K was one of the hardest kids she's tested. Heck, they didn't even finish all the tests. So, she's a kid you might look at and say is high functioning, but she doesn't function highly at all.

I shouldn't be sad, but I am. I can't help it. I'm a mom, it's what we do. I desperately want K to be accepted and loved and given a chance. I will always fight for that. Unfortunately, we don't live in a perfect world ready to love and accept and give kids like K a chance. We don't live in a world where it's easy to be different.

I do need to live in a world where my my kid is happy and fulfilled, though, and even that, right
now, is hard to imagine.

I wish everyday could be like her birthday. Where she was excited and happy and unconditionally loved by everyone around her. I wish I looked at 10 the same, innocent way, she does. The one thing that gets me through is reading blogs by those who are young and autistic (Autism Speaks debate, aside.) Yes, we only have 8 years, but we also have 8 whole years. There's hope, and I just need to focus on that.

10 is magical to my girl. I hope I can see the magic, too. For now, I'll just sit here and relive that perfect day.

 

 

And Then There Were Two

I quickly mentioned it in a previous post, B's newfound diagnosis. One that isn't all that suprising, for those in the know.

Aspergers.

To be honest, since B was a toddler, I've had my suspicions. The sensory issues (OH the sensory issues!) The way he uses language (I sometimes call him my little, old  man, because of the vocabulary he showcases). The ridgity. The stim-like behavior. The restricted interests. The way he prefers older kids, and has trouble getting along with those his own age (sometimes, 4yo's don't appreciate being chastised because they don't understand the finer points of astromony).

Yet, there was a part of me that thought some of his behaviors were learned. The only model he had for a very long time was K, and a lot of B's behaviors mimiced her's. But, there were definite differences, his language abilities being the most obvious. Although, having a first-born who was so language delayed, he could have been typical for all I knew!

I kept myself from having him evaluated for a long time. I wanted to see what happened this year in Kindergarten. If maybe being in "real" school all day, around his peers, would somehow help.

It didn't.

And so I made the call. Of course, in the world of special needs evaluations, time practically stands still. I made the intial call for an appt last September, and only last week did we recieve an official diagnosis.

As I sat in the meeting, going over his testing results, I wanted to tell the woman to just get to the Aspergers part, because I just knew. I had also been down this road before, and didn't need my hand held. Give me the report, make the diagnosis official, and let me get on with life.

But, I kept my mouth shut. I allowed her to go over the testing, piece by piece, forcing myself to not blurt out that I already knew the results, and just needed a copy to send to the school. The whole point of the evaluation was to get him what he needed at school. Period.

You see, B doesn't really bother me. He doesn't worry me. He is an intense kid, yes, but I embrace it. I don't look at him and see a list of deficits. He's happy. He's so, so smart. He has his moments, and struggles, but I just don't have the same concerns I do for K.

His diagnosis made me realize something else. If K was a typical kid, and I knew nothing about Autism beyond Aspergers, I would have a completely different opinion of the "disorder". I understand where people are coming from, who either have Aspergers, or a child with Aspergers, who don't see it as a bad thing. B is only 6, and I know things can change dramatically as he gets older, but right now, it's not a hugely negative thing. I get it.

But, I get both sides. I also get having a kid who was non-verbal for a long time, who throws meltdowns of epic proportions, has no friends, hates life, and is generally unhappy. Who struggles academically. Who has immeasurable anxiety. A child for whom I worry constantly.

If I only had B, my perspective on any Autism disorder would be a lot different. I am grateful that my experiences allow me to see both sides, and how different things can be within the spectrum.

SO.VERY.DIFFERENT. 

Am I saying all those with Aspergers live care-free lives? No. Am I saying all those diagnosed with another disorder on the spectrum live horrible lives? No.

What I am saying is that within the spectrum of Autism, there is also a spectrum of how people are affected, and we have to remember that, and never, ever invalidate the feelings of others. I can personally attest to how differently people can experience Autism. I see it everyday in my own house. I think it's an important point for us all to remember.

As my kids get older, I am seeing ASD (autism spectrum disorder) as just as part of our lives, becuase it's here to stay. I've stopped fighting the diagnosis, the autism itself, and instead have put my energy into making sure my children have the best lives possible, being autistic, or with autism (whichever they choose, or don't choose, one day).

But, I continue to understnad both sides. I continue to support my friends who wish for a magic pill to take it all away, and I support those who choose to see only the positive aspects of Autism. The only life I live is my own. The only experiences I have are my own. I won't ever speak for anyone else, which I've said ad nauseum, and will continee to say.

I now have two in the "club".

And I'm OK with that.