I talked the other day about "Vicki watching" and how it was the most the most rewarding activity ever. I love telling stories about Vicki. I love sharing little phrases she says and things she does. That stuff is so easy for me to share. But like I was saying in last night's post... it's hard sometimes to talk about the flip side. The heartbreaking side of "Vicki watching". I don't think I can adequately describe how I feel when I am "autism watching", when I am "PANDA watching", when I am "OCD and anxiety watching". And I HATE that all I can do sometimes is WATCH. All I want to do is take away whatever is hurting my child. And I can't. And sometimes I get so frustrated. And angry. And sad. And depressed. And that's nothing compared to the mental anguish that I am afraid Vicki is feeling.
Let me give you an example. I don't know if I can attribute this behavior solely to any one of Vicki's diagnoses.. and I don't think it really matters what crappy neurological thing to blame it on. What sucks is watching Vicki go through it. There is so much talk about finding the function of the behavior and doing compliance training... etc...etc.... It all sounds so good on paper. I do love data. I love graphs. I love fill in the blank answers. What I don't like is "all of the above" answers. Never did like them on tests. I can't stand all of the "always, sometimes, never, kind of, could be, who knows". I love sorting things into definitive categories. It's when something can be placed under a few different categories that I don't like. Which one do you put it under? Does it change the function?
Sorry... I got off topic for a second. The example. I can't remember how much I have talked about Vicki's eating. You all know that Vicki loves food. She loves smelling it. Preparing it. Everything about it. And I know she loves eating it too... But here's where the heartbreak comes in. She has been struggling. And I don't know how to help her. Or how to fix it. We've tried a zillion different things. Some things work sometimes. Some things work never. Some things just make it worse. One of the things we've always tried to do with Vicki is include her in everything we possibly can. We try to do as many things that we can as a family. Together. The 5 of us. And on Tuesday of last week it about broke my heart. We had to separate it. It was the 3 of them and the 2 of us. (As a side note and a topic for another post... I do try to make time for each child individually... and also plan activities for Joey and Ally so they can escape to something that is just theirs and not laced with autism. So I do understand the importance of that as well.. We made sure that I had some 1:1 time with Ally on the beach early in the mornings where we would walk and collect sea shells and talk. And my husband would take Joe out to the beach to play some football and take some big waves. We definitely do that kind of stuff... ) But for this example, it's just something we've always done together and to have to separate it... well, it was sad for me.
We have little routines that we build into our vacations. And Vicki actually does pretty good with them. In the mornings we sit around and eat breakfast and hang out, then we get our swimsuits on and go down to the beach. Then we head to the pool. Then we come back to the room and get showered and go do some other activities. Anyway.... it was breakfast. And maybe it's Vicki's addiction to routines or her OCD or whatever... but Vicki always asks to eat cereal, specifically Recees Puffs, when we are on vacation. I don't pour much into the bowl because quite frankly, I'm not sure she likes them all that much. I think it's just something she had years ago on a vacation and it has stuck with her. Anyway, the kids were chomping at the bit to get down to the beach. And Vicki was sitting at the table. Not eating. That's very common as of late. She wants to eat. She wants to move on to the next picture on her schedule. She just can't. For whatever reason it it, she just can't. She will go through her verbal scripts that she's been saying a lot lately... (I think I told you about the 'pink cut' story from when she cut her hand a few years ago.) She goes through that whole story. And she keeps adding onto it. She will pick up her spoon with cereal and milk on it. And she will put it up to her mouth. And she will open her mouth and even sometimes put the spoon inside her mouth without closing her lips. Then she puts the spoon back down into the bowl. Then she will say :"Vicki good girl" over and over again.. She will just sit there sometimes and stare off into space. She will yell. She will make noises. She will cry. She will pick up her spoon repeatedly and put it back down. She will go through this scenario over and over again. I know I am not describing it right. Because if you would see her struggle, if you would see her eyes, you would cry. It took close to 2 and a half hours that morning for her to begin to eat her cereal. When she finally ate it, she finished her cereal in 5 minutes. Then she stood up and said, :"Vicki bathing suit. Vicki beach. Vicki water." And it was over. Just like that. So we went to the beach, I got the amazing moment on camera of Vicki's eyes dancing and her smile so wide you would never have guessed in a million years what I just witnessed for 2 and a half hours. That is why I choose that picture and that moment over the 2 and a half hours of eating breakfast. Because I have to. Because I need to. Because it is too painful to dwell on that time. Thanks for listening. xoxo
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