The A-word.

This post may not make a ton of sense, as I'm feeling a bit all-over-the-map right now.
I wanted to talk about the A-word: Autism. Specifically Hadley's autism.
Here are probably the five most frustrating things about it at this very moment:

1. I feel like everyone around me is sick of the A-word, and don't want to listen to me talk about it. I can't help that it completely dominates our world right now. I couldn't begin to count the number of times the word runs through my head in a day and sometimes I want to talk about it. I don't know how to explain it, but it's like my child is wearing all red, but when I try to talk to someone about the fact that she's wearing all red, they shut down and don't want to talk about the red...even though they can see the red! Nobody asks us questions about it and I can't understand why. Are they scared to ask or are they sick of listening to me? I feel like it's the latter.
2. I can't fix her autism. This is so hard, as I like solutions. I know that this is our world now and that we're going to have good days and bad days, but sometimes I think I would give anything to have a day like the mom of a neurotypical child.
3. When Hadley is "stuck" inside her head, it nearly kills me to watch her and not be able to stop it. Tonight Hadley got stuck on a loop when we were putting her to bed. She was upset about wanting to read a book, but the particular book she wanted is falling apart. Something about that set her off and we lost her for about thirty minutes. She starts repeating herself, her voice getting higher and higher with hysteria, and soon she can't even remember why she is upset, she just continues to repeat random words and phrases. I try to hold her to calm her down, but she doesn't want that. I can't describe the pain of being pushed away by my child who is in distress. My arms ache from wanting to hold her. Sometimes, especially when she's lost in her own head, she looks at me and I can tell she doesn't even see me. She's seeing something play in her mind and no matter how hard I try, I can't get her to snap out of it. We've had some success using short phrases like, "Eye contact, please." which can sometimes force her out of the movie in her head, but sometimes she stays in that fog.
4. Trying so hard not to think of the future and focus on the present instead. I have always liked thinking of the future, thinking about where we'll be in five years, what fun things we will be involved in, but Hadley's autism does not allow me to even imagine where we'll be tomorrow, let alone five or ten years down the road. I can't have any expectations for her and I have to celebrate the small victories day by day. I don't know if Hadley will be even be able to go to regular kindergarten, so thinking about her life as a twenty-something is out of the question.
5. The frustration that no two cases are alike. I have joined support groups and I spend a decent amount each day on various websites and have yet to find someone with a scenario that matches ours. I feel so alone and there are days I watch other moms and kids at the park or museum and it nearly blows my mind.

Now, since I know nobody likes a total downer post, here are five awesome things that we're experiencing right now:

1. Hadley can read. Not just a few words. Like over 125 common words. I can write up any random sentence on her chalkboard and she can read just about all of it. She's been able to read some words since the time she turned 3, but now she has completely taken off. The Endless Alphabet and Endless Reader apps, and also the B.o.b. book app have been the biggest contributers to why she can read.
2. Hadley can ask for things now. I have to prompt her with, "What do you want?" or "What do you say?" and she will say, "I want ______ please." It's awesome. She still uses code words for a lot of things, like using the word "games" for her iPad, or "coins" for her piggy bank, but we get the gist of it. She also points a bit now, which for any parent of an autistic child will tell you is amazing.
3. Getting to be with her as much as I am. I will devote a blog post to how absolutely amazing it is to be a stay at home mom, but for now I will just say that I get an enormous amount of satisfaction being with her day in and day out.
4. She loves August and he loves her. She has never shown frustration towards him and really lights up when he laughs at her. I hope those two always feed off of each other.
5. She shows genuine interest in some people and some kids. She'll always be more of a peripheral player, but lately I have observed her approach kids and adults and even make a statement, like "Happy birthday!" if it's their birthday. Pretty exciting stuff!

Like I said, I'm sorry if this is a bit rambly (new word), but I have so many emotions about Hadley's autism and sometimes I think I just need to write to get them out. I understand if you gave up halfway through this post.