I talked a little bit yesterday about Vicki's OCD, and how it can be triggered by a seemingly simple change to her breakfast. In general, I probably throw the term OCD around too loosely. I think it's next to impossible to categorize and label Vicki's multitude of, for lack of a better word, idiosyncrasies. And in the end, it doesn't really matter how they are categorized. What matters is how I can help her function within them and around them.
As I said before, I am not a professional; and I don't feign understanding of this disorder. When things with Vicki get really hard, I do try to educate myself as much as possible on the issue of the day. I don't, however, research things as much as I used to. Generally, I feel overwhelmed. And I can easily get lost in the sea of information available at the click of a button. But I've found that no matter what a beautifully put together power point says, or what an intervention looks like in a book, or even what is supposed to happen when you are talking through protocols, there is no easy answer. Not with much of anything in life. And definitely not with Vicki.
Obsessive-Compulsive Disorder (OCD) is characterized by having a pattern of unreasonable thoughts or fears (obsessions) that lead you to do repetitive behaviors (compulsions). And a key component of OCD is that these behaviors interfere with daily activities and cause significant distress. {as defined by the Mayo clinic}. When I read the first part of the definition, I think so much about those early years of autism. And the many, many forms and questionnaires that I have to fill out tracking Vicki's progress/behaviors, etc... Words such as repetitive and ritualistic. Does the child have hoarding tendencies... Does the child line things up in a certain way? He's obsessed with dinosaurs. She carries around her books all the time. They line things up in a certain way. She has to turn the lights on and off 4 times every time she goes into a room. He spins around in a circle for exactly 3 minutes.... And so on. Is that all OCD? I don't know. But what I do focus on with Vicki is this. I look at 1 instance of behavior and I think... does this interfere with her daily function? Is she unable to move on? Or is it just annoying and time-consuming? Quite often, I don't know the answer to that question. And yet again, another instance where I wish Vicki could tell me what it feels like.
A few treatment options that I've studied and looked into over the years have include ERP and CBT. {Sometimes I feel smart when I am with my husband, who speaks in abbreviations all the time with his work, and a doctor or therapist we are talking to mentions an abbreviation that I know, and I nod my heading knowingly. Ha!} Exposure and Response Prevention (ERP) is when the patient is exposed to the feared stimuli and is simultaneously prevented from engaging in a ritual. Cognitive Behavior Therapy (CBT) helps patients understand the thoughts and feelings that influence behavior. It sounds easy enough on paper. Not so much in real life with Vic. Yet again, a perfect example of how language is so important. Yes, Vicki is verbal. And I am forever grateful for that. And she works really hard at aquiring words and building her communication skills. But it is very difficult for her. And many people who don't know Vicki well can't understand her. And many professionals take things at face value with Vicki. When in reality, her echolalia is in play, or she is scripting, or she is repeating the last choice you gave her... And a lot of the time she answers yes/no questions incorrectly. Or her responses are not correct, but most people wouldn't know that because they aren't privy to knowing her daily schedule. But, what I miss with Vicki, is the ability to have a back and forth conversation. And the ability for her to reach within and tell me about how she feels. Oh, she can definitely tell me how she feels, as I've described before. But I mean, really tell me. And that makes it hard to be successful with either of those above interventions.
I'm sorry if this post doesn't make much sense today. I feel like I'm spinning off in a thousand directions today and I have a lot of stuff on my mind and my to-do list. I plan to write more about how Vicki's OCD and anxiety impact her daily function and what it looks like on a typical day. But I need to stop for today. Much love to you. xoxo
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