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.

 

 

Barely Breathing

It's been a rough few days.

On Friday I had someone tell me that K will always be how she is, so it doesn't really matter where she goes to school, or what we do. How it is, is how it will always be.

I was told that if K needs to be in a self-contained class her whole academic career, that is fine.

I was told that it's my fault K has a lot of anxiety, and behaviors at home. That the private therapies we do are overwhelming her. (We do one social group/week, and counseling every other week. That is all.) That we need to quit them, hire a home aide, and take some time for ourselves, Kai and I. As a couple. Sounds great, right? Except, to me, it sounds a lot like throwing in the towel.

Maybe I am living in a fantasy land, but I have high hopes for K. Like, college. A job. A family. She's 9, and supposedly "high-functioning", so why shouldn't I have these dreams? I don't care if she does live with us forever, but I also think there is a great possibility she can do great things.

But, not if people give up on her. Not if people believe she can't even hack it in the mainstream for one class. Not if people aren't willing to give her whatever she needs to succeed. Regardless of cost. Because she is important. Her future is important. Because after all she has been through, she deserves it.

She's 9.

I'm not ready to call it quite yet.

But, being told these things? It has left me unable to catch my breathe. Unable to stop crying. I can barely leave my bed. I feel like I am failing my daughter, if there are those out there who believe these things. I feel like I am in a free fall. Literally. Flailing about space, having absolutely no idea what to do.

But, I also ask myself, are they right? Am I the foolish one? Am I deluded thinking K can have any semblance of the life I imagined for her? That she imagines for herself?

I am a strong person, but suddenly I feel very weak. I know I have to keep fighting for my child, regardless of what the peanut gallery thinks. I know that. But I feel that I'm living in one anxiety attack after another, and what if I can't get K what she needs? What if, at the end of the day, I fail? What if they are all right?

But, she's 9.

Others might give up, but I won't. I will fight until the bitter end.

Determined

Lately, I've been reading blogs authored by adults on the spectrum. I have fought against doing this for a long time. To be frank, part of me doesn't believe I can learn anything from a person who made it to adulthood without a diagnosis. We don't make it through a day here without autism ruling the roost, let alone 20, 30, 50 years.

But, I am trying to remind myself that things were different "back in the day". That their lack of a diagnosis in childhood doesn't mean they weren't autistic. They just lived in a time where doctors knew too little, and help was non-existent. Where parents were told their children might be schizophrenic, or bi-polar. Or shy, introverted, weird.

Even if these adults aren't exactly like K, they deal with a lot of the same issues. As she approaches her 9th birthday, and as things are really starting to bottom out, I find myself wanting to know anything about what the future might hold.

And, honestly, if K is more severe than these adults...I'm scared to death.

These are people who got through college. Living away at dorms, even. But, who still have an immense amount of difficulty in daily life. Whose autism gets worse as they get older. I can't imagine K ever living in a dorm. At least, not right now. And if things only get worse with age...

One thing I read really struck me. A woman wrote on her blog that, although people never really knew of her issues when she was a teen, throughout her whole high school career, she just wanted to die. Every night she went to bed, hoping not to see morning.

For her, "faking it" took it's toll. Now, as an adult, she can no longer fake it at all. She needs a lot of help just to make it through her day. She cannot work, drive. Her college degree goes unused. She's had multiple hospitalizations due to suicidal thoughts, and unbearable anxiety. And, while most adults on the spectrum write of neurodiversity, and the ways in which their autism makes them better, she is honest about how her life would be better if autism didn't play a part.

We have such huge issues now, and have for years, I can't imagine what the future holds. Or, rather, I don't want to imagine. I am completely fine with K living with us forever. I will accept whatever she chooses to do or not do. What I cannot accept is her ever wanting to die because of  expectations we, or anyone else, set for her.

I never want her to feel that she has to be "normal". That, no matter the cost, passing is the goal. Those who have followed me for a while know that I just want her to be happy.

Just.Happy.

I have feared for a long time that I could end up with a teenager who feels so lost, so depressed, that...well...I can't even put it down in words. Her self-esteem is already so low, I can't fathom it getting lower. Add in puberty and hormones, and it's like the perfect storm.

I really just feel frozen. I am so unsure as to what my next step(s) should be, and I don't want to make the wrong choice. Do the wrong thing. Make my daughter feel like some of these bloggers...who think life isn't worth living because of their autism.

In a way, reading these blogs is probably like Googling a headache, and deciding you have a brain tumor. Autism is a complex thing, and it isn't going to affect everyone the same. I should remember that a lot of these adults didn't receive any help as children, and maybe that's why they struggle so much now. That K's road might be different because we have fought for her, and we want to understand her needs, and give her the best life possible. Not a life we have planned out, but a life that will make her happy.

K turns 9 next month, and birthdays are sometimes more worrisome than they are joyful. We have so much going on right now, I wish I could just stop time, catch my breath, and figure things out.

But, alas. Time stops for no man (Or woman. Or child). Awareness on my part is key, and I hope K lives a fabulous life, where she looks forward to every new morning. If I have learned one thing from these adults on the spectrum, it's to accept and love my children as they are. To be understanding. To focus on their gifts, and not their deficits. To make others do the same.

For that, I am grateful.