Day 6. Year 6.

I think one of the hardest things for me is living in fear. It's a fear that's like no other that I've ever had. And I'm not exactly sure how to describe it.

For the most part, I would say this week was a *good* week. Vicki was able to get on her bus at 7:37 every morning. {On Monday, I needed my husband to get her up out of bed, if he hadn't... then this week, I'm sure, would have played out very differently. Tuesday I had to do a lot of physical assistance and timer/clock work to get her through her morning routine. By Wednesday she had started to internalize her 'new' morning ocd routine. And Thursday and today went about as well as I could have asked for.} You would think that would make me happy. It did. I was very happy with the progress we made. I was so proud of Vicki, and also proud of myself for keeping things calm and flowing as much as I could. And proud that we found something that works, for the moment. It felt good. And dare I say, it felt comfortable and secure by the end of the week.

But most of the time I try not to get too comfortable or too secure. And I think it's partly because of fear. Sometimes I don't enjoy the moment as much as I know I should. I don't celebrate a victory as much as I know I should. Because I am always waiting, always anticipating, always afraid. Especially this year.

I wish I knew. I wish I had a very specific list of *triggers*. Things I could always avoid so that we keep flowing. But no one can avoid things altogether. Not even if you know what you need to avoid. Oh, I have my gut feeling, I have a hunch. I have past experiences to draw from. But I can never say with certainty what it is that will set off a spiral that we have trouble recovering from.

I keep waiting for that something. Sometimes I can pinpoint that something. Other times I have nothing. It blindsides me. I understand that life is full of uncertainty and no one can anticipate how something is going to play out. I do.

But, in a very general scenario, most of the time I know that when Joe and Ally get up in the morning, they will get dressed and catch the bus for school. But with Vicki, I don't have that. I have no idea what the morning will bring. We could be flowing along in a very specific, very detailed OCD scheduled scenario. Vicki has to complete one task in the way that only she knows how it has to play out, before she can complete another. The kicker is, I have no idea what that is. Ever. I have no idea how her brain is firing. I have no idea what has to happen or what is happening that makes things go so wrong.

There tends to be a predictability, a familiarity, in mundane tasks.

But with Vicki, the predictable can rarely be predicted anymore. For instance, we were flowing through the morning routine on Wednesday... I know the places in her schedule that we *typically* have hiccups at. {For example... physically sitting up and getting out of bed has been a big deal breaker lately. And I will say, even if my husband is home and he tries to get her up, if there is something stopping her, something in her head stopping her, even he won't get her up. And if he does, then because we interrupted the sequence of what had to happen in her head, the next step and the next step are thrown off. And we won't make it on the bus. Because she can't get through it. She will fight and fight hard. Another stopping point is either before or after her shower when she is sitting on the potty. If she doesn't pee, then sometimes she won't move. Or it could be something way more complex than that in her mind, I have no idea. But, usually, once she is getting her clothes on and I am combing her hair, I know that the rest of her morning routine will happen and we will make it on the bus in time.} But on Wednesday, the whole morning went so well, so smoothly, that we were ready a few minutes ahead of our normal schedule. And that was different. Because the extra time was thrown in, or for some other reason I was not aware of, Vicki froze at the top of our driveway. And there was that fear that I am talking about. It wells up inside of me. The moment I feel her freeze. The fear is there, strangling me. If I can't figure out the reason she has stopped, or what will make her go again, then we are screwed. We could potentially be standing at the top of the driveway all day long. You probably read that and though... no. That can't happen. I am here to say, yes it could. It absolutely could. Because sometimes it doesn't make sense on the surface, but it does to Vicki. And I have seen how long it can take to "un-freeze" her, or wait her out, or whatever you want to call it.

So that's it. That's only one of a thousand examples that occur each and every day. That's why I live in fear. That's why when I sit in meetings  and someone talks about fading back certain supports we have in place, I cringe. I, of course, want to see Vicki be successful and I want to pull back when we can. But, I also know that things can change in an instant. The wind blows. And we need that support back. I can't anticipate what day of the week it will be or whether it will be 2 weeks from now or next month. But I know it will happen. And I don't want to be left without a back-up plan.

It's really hard to explain this if you think in terms of behavior only. I know, deep down inside, I know it's not just a behavior. It is so much more. And until we can find out how to help Vicki, it will keep happening.

Just one more example for tonight... I just got done saying how this week was *good*. And I use the word *good* very loosely. Because even thought it is better than last week, it's really hard to define good. Good to me is my Vicki smiling and laughing and being able to get into and out of the car. Good to me is being able to do the things she could do 4 years ago or last year. How good is good if you can't even try anymore? Sorry, Squirrel. Anyway... the example. Based on my description of this week getting onto the bus, you would think that most of her bus transitions would be pretty decent. Well, on Wednesday, I noticed that her bus wasn't pulling up to our driveway within the usual time frame after school. Maybe there was a bit of traffic. Maybe another student had a little trouble. But even thought I didn't know why the bus was running a bit behind schedule, the fear started creeping in. I just knew. I knew Vicki was having trouble. And by the time the bus pulled in 25 minutes late, I knew why. She was having a good day, until she wasn't. And that's when a struggle ensued. Sometimes it takes everything everybody working with Vicki has to get her onto that bus. And I appreciate it. I really do. I know they love her and care about her and want to help her. But when that block comes from Vicki, that's it. It's hard for anyone to get past it. Most of the time I don't want to describe in detail what anyone has to do to get past it with Vicki. And I won't now, either.

I just used this as another example. And example of living in fear. It's not easy.
I will admit something here. I wanted to end this post with a cute little quote about fear. But when I googled 'quotes about fear' and started reading them, I just got really sad. I just read a quote that said:
Don't lose yourself in your fear.
Sometimes I'm afraid I already have. xoxo