Good morning! So, for starters, I said yesterday that I would describe how Vicki puts puzzles together. And in describing this, I hope it gives you a little glimpse into the complexity of Vicki's world and a chance to begin a discussion on OCD. Before I go any further, I want to be very clear. I am writing this from the perspective of being an expert in 1 field and 1 field only. I am writing this as Vicki's mom. Period. Yes, I believe I am as close to an expert as anyone can be in discussions that revolve around Vicki. I have the advantage of observing her behavior day in and day out, just about 24/7 from the day she was born. I have seen her grow and change; I have seen behaviors emerge, disappear, and circle around again and again. But to be clear, the only expert on Vicki is Vicki herself. And what I wouldn't give to be able to talk to Vicki and have her describe how and what she is feeling. Now, that's hard for anyone to do, talk about our feelings and motivations, but it is especially hard for Vicki because of her own set of unique challenges. I want to talk about Vicki's forms of communication but will save that discussion for another post. I also want to stress that I am not an expert in the field of psychiatry or psychology, or in the field of behavior analysis. I do research, I do the google dance, and I observe and theorize a lot. I've seen interventions that work with Vicki, I've seen interventions that fail with Vicki. I have a collection of 'tools' that I try to use to help her navigate the world on a daily basis. And that's about it. A lot of the times I wing it, or look like that little girl in the meme world - the one who has 2 pigtails and shrugs her shoulders, makes a dumbfounded face, and throws her hands up, like 'I have no freakin' idea'. With all of that being said, here we go.
I always wonder when Vicki is completing an activity, 'Does she like it? Is she enjoying it?' That's such a hard question to answer, and I really can't. When I look at Vicki's behaviors and tendencies, I absolutely compare them to the behaviors and tendencies of her 2 siblings. I don't look at it as comparing a-typical to neuro-typical or look at it as a competition... well, Joey knew his colors and numbers by the time he was blank years old and he blank blank blank. But there are always comparisons. And that's not always a bad thing. Because for 1, I look for expectations in certain situations. You hear all the time that for children with developmental delays and autism and other conditions, that there is too much focus on what they can't do, and not enough on what they can. There is too much focus on their deficits and not enough focus on their strengths. And I agree with that, to a degree. I try very hard to celebrate Vicki, in all of her uniqueness. She has taught me so much, she has so many strengths, I could fill up pages and pages and if I keep digressing on this post, I will. :) But, she also has weaknesses, as we all do. And so much time and energy is focused on goals to get her to a certain level. Is that bad? Coming from a background as a physical therapist, goals are ingrained into my thought processes. SOAP notes. Subjective. Objective. Assessment. Plan. Measurable and quantifiable goals. Yes, they are needed. They are needed to measure progress, assess whether your plan is working, or if you need to change strategies. And, bottom line, for just about anything in life, you need to prove that what you are doing is working so that the appropriate professions can get reimbursed and paid. Anyway, sheesh. Squirrel. I can't seem to actually put a complete thought together. Sorry. I was talking about looking at expectations in certain situations. Because we have so many interventions and strategies that we use with Vicki, sometimes it's hard not to get bogged down with analyzing every moment. Sometimes I have to take a step back and say to myself, what would I expect in this situation from Joe or from Ally?
For example, I started off by talking about Vicki completing an activity and wondering if she enjoyed it. Does Vicki like to do puzzles? I'm not sure. One thing I absolutely HATE completing, and I have to do this on a regular basis, is 'preference assessments'. Trying to figure out the things that Vicki prefers to do so that we can see what kind of reinforcers are meaningful. I really dislike analyzing leisure activities. Maybe I think too much about it. Ha. Me overanalyzing something. Unheard of :) I think it's an interesting question tho. What do you enjoy doing? If you didn't have the language to describe it to someone, how would someone know what you liked? Maybe looking at cues, right? Looking to see, well, first of all, if there is an activity set up at the table and you are in the living room, would you get up to complete the activity? Sometimes a question seems so cut and dry, doesn't it? For anyone, not just for Vicki, but maybe at that moment you just aren't interested, right? Sometimes you have to be in the mood to do something. Maybe at that particular moment, the thing you enjoy the most is being a lazy bum on the couch. Doing absolutely nothing. Getting lost in your own mind. Daydreaming. {As a side note, what I wouldn't give to be a fly on the wall in Vicki's daydreams.} If I had a puzzle box set out on the kitchen table and asked Joe or Ally if they wanted to come out and put a puzzle together with me, would they? They would probably moan and complain and whine about it, or they would ignore me completely and stare zombie-like at their twitter feed, or Instagram feed on their phones. Does that mean they hate puzzles? No. But, will they come out and help me? Probably. Because a lot of the time the puzzle ends up being a backdrop for conversation and enjoyment in back and forth banter. And that, that social interaction, can be a huge motivator for a lot of people. And that social interaction is something that many people crave and could be what draws Joe and Ally out to the table to do an activity with me. Is that what would draw Vicki out? Probably not. I also wanted to point out one other thing. When I was talking about preference assessments, how do you find out what someone wants if they don't have the verbal strength to scan their memory and tell you? One of the ways is to set up a field of view for the person. For example, set out a puzzle, a coloring book, and a game. See which one the person picks. But one thing you have to be careful of with Vicki, and with many people, is how you set up the choices. Sometimes Vicki will pick the one on the left side consistently. Or have some sort of pattern that she chooses from that only she knows. So, you have to vary the location of the choices. It's the same with spoken language choices. Do you want blank or blank? You always want to make sure you switch around the choices because the pattern may be that she chooses the first answer all of the time. Or it could be that she just repeats {echolalically} the last thing she hears. Ok, back to the activity.
When someone is completing an activity, you look for clues to see if they are enjoying themselves, right? Do they smile occasionally? Do they talk amicably about it? Do they stick with it? Do they seem interested in completing it? Do they actively seek it out? With Vicki, it's hard to interpret some of the clues/cues you see, and some things just don't occur at all. So, how does she put a puzzle together? She regularly completes 50 piece puzzles, and she can do a 100 piece puzzle. She does like to look at the puzzle box as she is putting the puzzle together. If I were to just put the puzzle in front of Vicki and strictly observe her, not say anything to her, or cue her in any way, she would put the puzzle together starting in the upper left hand corner of the puzzle and work systematically through the puzzle from top to bottom, left to right. Piece by piece. She wouldn't move on to the next piece until the piece that touches it directly is found and put in its place. She will work at the puzzle this way until it is all complete. She's actually really good at puzzles. She has a knack for finding the pieces and putting them in quickly. And most of the time, she just sees it. Like, she won't have to turn the puzzle piece each different way to see if it fits. She sees the piece, picks it up, and places it correctly in its spot on the first try. It's actually pretty cool to watch.
Is there a woo-hoo moment at the end of her puzzle when she triumphantly says, I did it! Come check this out! No. Have I occasionally seen a little smile tug at the corners of her mouth? Yes. Does she talk to anyone while she is completing a puzzle? Not usually, unless forced to, and you can tell she's not happy about it. Does she allow someone to jump in and help her? Not usually. And if that happens, she may yell or try to block you from assisting. Will she randomly get up on a Saturday afternoon and grab a puzzle to do? No. Does she ever ask to put a puzzle together? No. How does she handle that moment when she realizes that there is a piece of the puzzle missing? Not well. For so many things, it's hard to tell whether she enjoys an activity or whether she is just checking off the next thing on her to-do list, her schedule. So she can move on to the next thing and then the next thing. Does the enjoyment come from the activity, or is it the completion of the activity and moving through her list that gives her satisfaction. Or is it satisfaction at all or a compulsion. I could go on and on with my musings, and unfortunately for you, I have. I will pick up tomorrow with more about OCD and how it impacts and imprisons Vicki's daily life. As always, thanks for listening and being here. I hope you got some kind of satisfaction from reading this today. :) Much love to you all. xoxo
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