Sunday, April 3, 2016

Day 3. Year 6.

I'm going to write a little earlier tonight. And it's probably not going to make any sense. But this is our life, and sometimes nothing makes sense. I love a good puzzle. I love a good book. But sometimes.... it's just too much for me to process. And right now, this moment, is one of them. Today was filled with exciting highs and heart-wrenching lows.

So, I wrote last night about how we had spring break this past week. And how Vicki hasn't been out of our house (with the exception for our backyard for a few minutes a few times during the week, which, don't get me wrong, was exciting in and of itself because she hasn't been able to go in our backyard but a handful of times this past year.) I think, no, I know, that Vicki misses being out in the world. I know she does. All week she had been asking for trip and hotel and restaurant. But when the time came to see if she would actually be able to follow through with her requests, she couldn't do it. She would freeze and become very anxious. But today she kept asking over and over again to go in the van and go to a restaurant. And, again, she's done this quite frequently over the past year. But then when she would have to stand up to go get into the van, she couldn't. Anyway... you know that when you are highly motivated to do something, the probability that you will complete the task increases, right? That's usually the case, except with whatever is going on inside of Vicki right now. Call it whatever you want. All I know is that her brain and body are not cooperating with each other. And sometimes I can physically see her fighting herself. It's in her body language and in her face. It's so hard to describe unless you see it. And I hope most of you never do. It is heartbreaking to watch. But in the same breath, I want all of you to see it. And I want you to see how it changes. And how it stays the same. And it drive me to the brink. I don't understand any of it. Not one bit. And that is very hard for me to accept. It's not a fluid behavior. It's not tied up neatly in an ABC data form. Here in the antecedent. Here is the behavior. Here is the consequence. This, whatever this is, with Vicki... it doesn't work like that. It's so obvious now that it doesn't fit a mold that the behavior company we work with no longer attempts to figure out how to get Vicki through it. They tried for a few weeks. Stood and watched her not be able to transition for 6-8 hours. Took data.. And then stopped.

Sorry, I can feel myself drifting off from the original intent of this post. It's a very hard decision for us anymore. To try or not to try when Vicki specifically asks to go somewhere. You may think that's harsh. But we have reasons why we don't try. For instance, the more we try and then fail, even if this behavior wasn't serving a clear function, we would end up reinforcing her not completing a task. Because you never know how hard it is going to be to force Vicki into the van. Even when she really, really, really says she wants to go. And if you think about it.... when you go somewhere in your car, you usually have at least 4 different transitions, right? Unless you are strictly going for a drive. You get in the car, you get out of the car when you reach your destination. You do your thing. You get back in your car and then you get out of your car when you return home. Just think about that for a second...  everything we take for granted. I take it for granted. It's easy for me to get in and out of the car. Now maybe when you have a toddler, you don't want to take that toddler into a store... I remember those days... but ultimately, even if your toddler was throwing a temper tantrum, you could technically still pick your child up and take him/her into the store, or wherever you were going. It might not have been the easiest, but if you really had to, you could do it (always different in different situations though, I understand that). But with Vicki now.... I don't take any of those transitions for granted. And no one but my husband is successful at getting her through those transitions. And even when he does, it's usually not pretty. Not pretty at all. We are scared. We don't want to create more anxiety for Vicki. We don't want Vicki to get hurt.. We don't want to get hurt. And we don't want the world to see how we have to live.

So, what usually happens? Lately all 4 of those transitions have been heartbreaking.

But even if you have 1 of those transitions that goes fairly well (like today!!) and you start having hope again... thinking... maybe this is it. Maybe she is turning a corner. Maybe just like that this torture is over for her and for us and for her brother and sister. And then we have the next step in the transition process. And it takes an hour. And you know she wants to. But she can't. She's stuck. So you split up time... just like a lot of parents do with kids... I take Joe and Ally in to eat and play and Daddy stays in the van with Vicki. Trying just about everything he can think of to ease her fears. He sits beside her, he holds her hand, he talks to her, he walks her through the time because she keeps asking to get out at 7:10, no. 7:11. And then when 7:11 comes around, she changes it to 7:14... you see this pattern, right? And then he'll ignore her. And then he'll sit quietly beside her. And then, all of a sudden, she can move. And she tells Daddy where to move to and how to stand and then it's over. She's out of the van. And then she starts walking. And then she stops. And she freezes. And she can't move forward. And then she can. And then she sits down in the restaurant!!!!!!!! Oh my goodness. And then she watches the timer. And then when we ask her what the timer is for, she doesn't respond. And then when there is 2 and a half minutes left on the timer she jumps up and says, Vicki. She wants to. Vicki go to bathroom. And then the fear that I have... what if she gets into the bathroom and I can't get her out? Oh yeah, that's happened before. But we make it. And we all leave. And then we get home and she can't get out of the van again. I wrote most of this while she was still sitting in the van, not being able to move and get out. It's heartbreaking. Finally Daddy had to get her out forcefully. And then I got to start the waiting process of having her pee before bed, not knowing how long she was going to stand naked in the bathroom until she was able to move and sit down.

It's all like a horrible game of childhood freeze tag gone wrong.

I told you this probably wouldn't make any sense.

But that's what it looks like, and that's why sometimes we don't even try. But tonight we did. And we were rewarded with 1 absolutely amazing transition. And we heard her giggle. And we saw her laugh and smile as she sat at Chuck E Cheese and ate a slice of pizza while watching her timer. I should be over the moon. And I am. But it's so hard to  sometimes when you've also seen the fear and anxiety and difficulty. And you know that you have to immediately fight another battle. Unsure of how long it will take you. How long until she sits down to pee so she can go to bed. And then the fear as I am sitting here now... wondering if I will be able to get her out of bed tomorrow morning so she can get on the bus and go back to school after a week off. And then worry that if I can't, then we will have to cancel the IEP meeting that we have tomorrow morning and reschedule it. And know that as soon as I am done writing this post I will print off a draft IEP that was just sent to my email an hour ago by the school. And I have to stay up and review it tonight. Sometimes it seems like just too much. But I know we will never stop trying and fighting for Vicki. Because, damn, that smile is so beautiful. And Vicki deserves every happiness and every smile and every laugh.

Thank you, as always, for listening to my nonsense. You have no idea how much it helps me. xoxo




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