The title is “Naughty Auties” battle autism with virtual interaction, and it’s about an area in the virtual world Second Life that has been made specifically for autistic people (including Asperger’s) – for things like practicing socialization, hanging out with others. Neat!!!
Some of what I’m about to say is in direct response to comments of his, but some of it is just trigger-association stuff. Because “Cookie Gimp” is a disability activist and was born a “gimp” as he puts it, he has some strong feelings about rehabilitation in general, so we go off on all sorts of interesting tangents.
He pointed out that on the Geriatric Depression Scale, which has standardized questions, the elderly are asked if they feel worthless. Yet that is not a question typically seen on scales meant for those with physical disabilities, to the best of his (and my) knowledge. He also pointed out that oftentimes, able-bodied people assume that people with disabilities are depressed because they would like to be “normal”. This is very NOT true. For example, people assume that deaf people would want to hear if they could, but Deaf culture doesn’t necessarily work like that.
He shared a really interesting article about a blind OT,
Guitard, P. Lirette, S. (2005). Overcoming Barriers: Becoming an
Occupational Therapist When You Cannot See! Occupational Therapy Now
I personally cannot fathom being a blind OT, but I guess anything is possible, with enough modification. I’m going to try and get my hands on that article.
Finally, he e-mailed me regarding our Little People project, where we stated that according to Person-Environment-Occupation theory, the environment is easier to change than the person. He gave me permission to post this verbatim:
****In your project, you say that one assumption in your research design
is that the person is harder to change than the environment. Now to me,
OT is fascinating as a discipline because it lies at the intersection
of psychosocial individual change and structural change. But what is
the basis for this premise? I assume you get it from your
literature/field and that’s not your own idea. And for people who have
accidental trauma, it might be true. But many people born disabled
(which surely includes little people) face a lifetime of constant
adjustment. And I realize it’s outside the scope of your project so I
again point out that in terms of wheelchair access, I am only about ten
years older than you (not much in lifespan terms) and yet not one of my
three public schools that I attended is now wheelchair accessible. I
would say that individual change is easy and structural/environmental
change is virtually impossible. But I think by environmental change,
you are contemplating installing grab bars in people’s homes, not in
public places. Yet how can people work or participate in activities of
daily liviing without structural change? Here’s a challenge. OTS of the
world: when you go home, why not visit your high school alma mater and
do an accessibility audit of your school. I think you would be
Doesn’t he have some great points? I DO tend to focus on private environmental modifications, not public ones. Anyway…my e-mail box is almost clear and I got a ton of work done this afternoon at OTS Kerri & Brent’s house, so I’m thrilled. And I even got my dreaded dishes done. But I still have 20 handouts to go on Well Elderly, and a lot of work on Tai Chi research, plus SOAP notes, so augh! It’s okay though, just breathe….la la la
Common reasons for wandering:
Resident is bored
Resident is looking for a way to leave or get home
Felling hungry or thirsty
Needing to go to the bathroom
Feeling anxious or afraid
The goal is to keep these patients safe and out of other individuals’
rooms who may be sleeping or not appreciate the “intruder” as well as
to make sure they are properly engaged in meaningful activities as able.
1- Involve in physical or movement activities (dancing, exercise, parachute activities)
2- Set up a “wandering trail” with interesting things to stop look at
and/or do long away 3- Normalization activities: sorting jewelry or
stocks; tying laces; untying or unknotting socks; sorting and folding
laundry; sweeping; testing
4- Set up “comfort” areas (chair, pillows, couch, music playing, things to look at) that draw resident in to rest
5- To keep the resident out of areas that may be unsafe try using
large, colorful signs such as: Detour – Do Not Open – Men Only (for a
female wanderer) – Women Only (for a male wanderer) – Danger – Out Of
Order – Sometimes it may work well to actually personalize the sign
with the resident’s name, such as “John, Do Not Open This Door”
6- As you approach a person to try to redirect them out of an area use
a calm tone, converse about topics of interest to them while walking
with them and then as you gain their trust, gently lead them back into
a more appropriate area.
7- Make sure the person’s basic needs are met, ie, that they are not
looking for food, water, or the bathroom. Sometimes you can ask them
what they are looking for
8- Use sensory stimulation experiences
9- Utilize gliders and /or rocking chairs
describes the benefit, which raised money to buy Appalachian dulcimers
to help autistic children benefit by learning to play music. Also on
her website she describes her recovery from Radial Tunnel Syndrome, which was brought on by years of playing the dulcimer incorrectly.
OT/PT and also because Sarah is a remarkable young woman with a great
future ahead of her.
You have enough to read,
but maybe during the next break definitely add “Where is the Mango Princess?” by Cathy Crimmins to your list.
a caregivers experience with her husbands traumatic brain injury. It’s
awesome, filled with facts, but also an incredible personal journey.
Oh and it mentions her experiences with OT…. that’s cool too : )
Anyone else have some good books to recommend that have to do with personal health-related stories?! Or movies? I want to rent Away from Her or whatever it’s called. I’m starting to lose track of all the stuff I want to read. There are not enough hours in the day, augh.
Right now I’m cleaning out my email box, hence the many random posts.
Hello. I just stumbled upon your blog. I wanted to tell you how
wonderful I think it is that you have “So your Daughter has been
diagnosed with Rett Syndrome” on your list. my daughter has Rett
Syndrome and it is so difficult to find doctors and therapists that are
familiar with it. If you contact the International Rett Syndrome
Foundation you can purchase the new edition of the Rett Syndrome
handbook. Thankyou for caring about the children.
Also another one for you: Schuylers Monster
you can find us at caitlynsfamily.blogspot.com
Today was day 5/10 of my geriatric Level I fieldwork at an Alzheimers Day Center…in other words, I finished my first week!
I realized I never fully explained how this place works. You walk in to a lobby and sign in. You take the patient to the giant room by pressing a button, and then help the patient find his/her name tag. Then the patient joins whatever is going on. There is one massive room plus several smaller rooms/areas, including one with a fish tank and one with a bird cage. They set up circles of chairs in these various crooks and have simultaneous events going on – one event is doing current events while another group is doing trivia or bingo or jingo or balloon ball or who knows. The biggest issue is noise level. Overall it flows smoothly and they try and do different things every day. They do breakfast, HOLY CRAP THE RAIN JUST SCARED ME HALF TO DEATH AUGH. Okay anyway, my heart is now beating ten thousand beats a second, okay so um, yeah, breakfast, then lots of activities, changing every 30 minutes to an hour, then lunch at 1230, activities, snack at 330ish, activities…And there is a TON of PCAs, I think the ratio is 1 to 4, so there is always a helping hand or a distracter or calmer.
Overall today was um, interesting, I guess I'd say. A little less ordinary in some ways. I kind of have some random stories so sorry if there isn't a lot of flow. I helped feed people, I helped people walk, I helped transfer people, helped weigh people, listened to people talk about things that made no sense, you name it. Helped pass out the food, get people to the tables…The only thing I don't do is help out in the bathroom. Mostly because I don't feel ready, but also because I don't know these patients the way the PCAs do, as some of them tend to get combative in the restrooms. Since I don't have an OT to guide me and the point is to keep them calm, I think it's best that I not try to deal with that. The PCAs are very nice to me and help me with anything I ask about, but it goes without saying that they won't appreciate it if I go around accidentally agitating patients.
This morning a local preschool daycare came and I think it was impromptu, I don't know, but we were in a frenzy setting up. My nonstop talker/singer was obviously going to affect their singing, so I took him to the furthest corner of the very large room, near the birdcage. He did his nonstop talking although at one point he asked “How old are you?”. I was blown away by this because him being able to ask a question or say ANYTHING meant he had either been startled or had an INSANE amount of motivation. He told me he had a daughter named Bonnie that age before lapsing back into mumbling and singing. I think he really likes me (not in a bad way), but we've spent a lot of time together and I guess he feels safe around me.
So a few random stories…One of the things I think is silly is that there is this one woman who is ALWAYS worried about hunger. She asks for reassurance every few minutes about food coming. The food always comes to certain tables first, and the snack order happens to be opposite. People just sit anywhere, and I think the staff should work a lot harder to make sure she sits at those tables that get fed first, to save herself, the staff, and her seat-mates a lot of grief. That's one of those little things that actually makes a huge difference.
Let's see, what else. The anguished wandering lady is on medication that should calm her, but they didn't really work as expected. She was a mess today. She was so tired she was practically falling down as she wandered, and scooping up imaginary things on the floor, and muttering vulgar things about “knocking the *(#&(# out of …” etc. She is the only one there who truly breaks my heart. She lives in a world of anguish and despair and there is almost no way to ever reach her.
During a break, one of the PCAs was telling me how she got slapped in the face the other day, and how some of the people do occasionally get combative, especially in the restrooms, and do end up hitting them. Luckily nothing too serious, and since they don't have access to like, knives or scissors, so things are pretty safe.
One of the ladies I spend a lot of time with, who is a lot younger than many people there, appears to have some lesbian tendencies (although she was married at one time, according to the charts). She likes to hug and kiss a LOT, and put her arms around the girls. Today she had her hands on my sides and they were dangerously close to my :cough: breasteses, and I was like whoah nelly. One of the PCAs confirmed she'll kiss your neck or mouth if you don't watch out. lol.
I found some hand lotion that I used to do hand massage on a few people …I want to keep a small bottle of hypoallergenic hand lotion with me in my volunteer smock pockets next week so that as the opportunity presents itself I can spend some one-on-one time with participants touching them and giving them attention and learning more about them.
This morning, I walked into a room that was doing a session on current events from the newspaper. The PCA read “Today it is February 28th” and I said February?! And the PCA giggled because she had messed up, and one of the participants said “Honey, I think you and I need to change places. It is you that has this Allenheimers memory loss stuff.” lol
I realized on day 1 – but kept forgetting to share – that the tables are somewhat high and the chairs somewhat short. This means when the participants sit down, the table is practically at high-chest/neck level sometimes. At first I was puzzled, but it actually makes sense…it takes a lot less energy and a lot less mess to get food to your mouth if it's practically that high anyway. That's my theory at least. (They also wear little aprons backwards as giant bibs before eating).
There is one woman I haven't talked about before, who just wanders around silently. Her face is expressionless. She is a hoarder, and she'll hide things in her pants or put stuff randomly away somewhere. For example, I was in the art room when she walked in, and I watched her carefully. She picked up a small metal tray and walked around the room with it, and I saw out of the corner of my eye that she laid it down on the floor. When she left I went to collect it, and there was also a pile of badges there (it's kind of a spot where no traffic ever is). I had apparently found one of her squirrel spots, lol. It was interesting. Oh and a girl found a clean diaper under a chair today, that that lady probably put there also.
Also, this afternoon, I implemented the first part of my art project. They have a big art room with lots of art supplies and huge glass windows overlooking the (currently barren) garden. I had Miss um, lets call her Marjorie, come with me to start decorating construction paper flowers and other garden-like scenes, to be taped onto the glass windows. She spent almost 2 hours in there. She was content and I learned a lot about problem solving and conversation by watching/interacting with her (she is one of the highest-functioning people there). I also was busy cutting up things to prepare it for people. I wanted to get a rudimentary garden scene up so that I could have people come in and see it and grasp it, so that we could work on making more flowers for it, or bugs or whatever, and also hot air balloons. It could be graded easily up or down, but honestly, even the highest functioners could probably not do much more than color in a flower, unless I was alone with them to really assist. This Marjorie made a star and moon and apple even after a lot of talk about it being a garden scene, so I think it's going to be a rather interesting garden scene, but you gotta start somewhere, and she enjoyed it. It took her forever to make these few items, but she was happy. I asked her about drawing at home and she said they didn
9;t have any crayons. I told her they sell really cheap ones at the dollar store, and she got excited about that and said she'd ask her daughter to go this weekend and that she hadn't thought about the dollar store having them. That would be great as a leisure occupation for her at home. Yay!
I continued to get to know the people, and I really enjoy them. My nonstop talker clearly tried to get my attention quite a few times, and in the afternoon when I went over to him, he was clearly somewhat agitated and was wanting to do something with me. He ended up sitting down with me in a quiet corner…I actually tried to take him into the glow light room and he paused and said “We can do this here” and sat down outside there. I acquisied (sp?) but I was like ????. I just sat with him and had no idea what he was trying to get across to me. I normally hate noise, but for whatever reason, his nonstop talking/singing doesn't bother me. Unfortunately, my FixxyLady also wanted attention, and she is also high maintenance so I couldn't handle them both at once. It worked out in the end because a PCA took him away. He was talking about us doing something together, and I really couldn't understand. He seemed to want to go fishing together. I don't know. I said goodbye to a lot of people as I went and everyone is so sweet.
You know, while I think I would have learned a lot by shadowing an OT, I think in some ways I've learned more by NOT having anyone. By having somewhat of a caregiver perspective (basically being a mini PCA) while dealing with a population that was totally alien to me, I've gotten a lot of insight. I also love how easy it's gotten to completely lie to people (ie go along with what they say or ask). “Is my dog inside?” — “Yes of course it is, I just checked on it”. lol. I think what I love about these participants is that they are soooo random and frequently inappropriate, JUST LIKE ME! lol
I have many goals for next week including finishing up my SOAP notes, getting as many people as possible into the art room to work on the garden scene, gentle hand massaging as an interaction tool, writing up a list of basic things that could be easily changed to help things…etc. Honestly they do a pretty great job.
By the way, I got a comment tonight that said she always wanted to work in pediatrics but my posts were inspiring her to consider older populations. That meant a lot to me. I too only say I want to do babies, but I'm really enjoying these patients. I don't think I could handle nursing homes, but assisted living and/or day care centers like this one, are pretty awesome. I plan to drop by occasionally to visit with the people even after fieldwork. They could really use someone to just sit and listen and hold their hand and nod/go along with things. If you are looking for an informal volunteer opportunity, this could be a great one. Or if you have little kid groups that would love an audience to sing to or whatever…consider calling up adult day care centers.
So anyway I got off at 4pm, then went straight to go pick up my little 13 year old friend.We went downtown to Peabody Place (like a mini mall), where we played at the ridiculously overpriced Jillians game area. Or rather, he played and I watched. Then we got mint malts at Maggie Moo's. Then we walked to the river, down the steps and actually against the river, where he practiced skipping rocks, and I kept warning him not to get his feet wet. It was cold outside and it was a long walk. He, a typical boy, wanted to just skip rocks in the water and make logs drift. We then went to eat sushi, he got a ton of it and he ate it all. He ate raw fish and wasabi and anything, the little freak :). Then we got Baskin-Robbins (hello growing double chin). Then I rushed home to see if my Internet was still down (it was), because it was 8pm and I work at 9pm. I spent some time with tech support and THANK GOD, it was fixed. I told the tech dude I fell in love with him. I meant it too, at least that second. I have to say this – I hate Comcast with a passion and would like to see the company fry in acid, BUT, their wait time has been really short and their tech people nice, and I appreciate those aspects. It makes their ridiculous policies and high prices a little more worth it. ::vomits thinking about Comcast:: okay moving on
ANYWAY just finished working my shift…well 30 minutes ago that is. I need to get to bed, gotta be up early to hold babies! In the afternoon, I have plans with several friends, plus a lot of project work to do of course.
Today was Day 4/10 of my Level I geriatric fieldwork at an Alzheimers Day Center. It was awesome. I helped feed a woman this morning who hardly ever opens her eyes or responds, and I said crazy enough things that she once or twice looked at me and even briefly smiled. Until this week I've never fed a grown-up. It's a strangely intimate experience. I did a lot of wandering around with different groups, just observing how they were run and how participants respond to the PCAs as well as each other. I experimented by taking the nonstop-talker, let's call him Bob, to the small room that is almost like a mini Snoezelen room. Lately there has been this trend for really interesting glowy lights and such and I don't know why they are referred to as Snoezelen rooms. But anyway this room has this huge horsetail like thing of green glowing fiber optics, plus this bubble lamp thing that has moving bubbles and changes colors. I wanted to A) see if Bob would calm down some and not talk as much, and B) just keep him out of the general big area, because his talking is so disruptive to everyone else.
I had him sit down in the rocking chair, and then handed him the fake sleeping puppy. He was so startled by it that he said “What is this?!” which made me laugh. He basically can only say something appropriate if you startle him enough, (and only keep it up for about one sentence), so I thought it was funny the puppy was so startling. He prefers to just rock and hold his hands and do his talking and singing so we just sat in there a long-time. I'd try to startle him and get his attention in various ways and he would occasionally say appropriate things. I feel like all these patients have fragments of their old selves inside, and it's just a matter of finding those rare fragments. I also tried to get the wandering anguished lady in there, to see how she would respond to the Snoezelen sensory experiences, but she didn't want to.
Then I decided to take FixxyLady (the one who loves to talk but makes no sense), back in there, to hold the dolls again. We sat in there a long time with the baby dolls and stuffed puppy. She had all three dolls and puppy on her because that's how she wanted it, and when she seemed to express concern that I had nothing to hold onto, I assured her the pillow was enough for me. She seemed like she was trying to tell me a rather tragic story, and while there was no way to fully grasp the details, it appears obvious something bad happened involving children.
For both Bob and FixxyLady, my motives were mixed. I wanted to get them alone to give everyone else some peace, and also see how calming environments do, so I could try and get more “realness” out of them.
Let's see. I got to look at a few more charts – truly there is usually only one interesting line in the entire chart, which is what their previous hobbies/occupations were. And I thought it was hilarious that one of the responses to “What does she do during the day?” in one of the charts was “Aggravate the hell out of me”. AHAHAHAHAA
One of the questions that the center asks caregivers is about what the caregiver has told them about the center. Most caregivers tell them it's just a place to socialize and have something to do. Those with higher functions don't realize they have dementia, they just know there's an awful lot of interesting people around.
In the afternoon, after chart reviews, I took Bob to the art room to see if I could get anything out of him based on his previous hobbies/interests. I pulled out some butcher paper and crayons, and when I drew a few things that he had knowledge of, he might make a single appropriate comment, but would always lapse into his incoherent talk within a few seconds. The art room has a great view of the outside garden, and Bob would occasionally have his moments of clarity and say things like, Why that sure is the prettiest site I've ever seen. He would talk about dirt and stuff and finally I decided taking him out there was a good idea since he wasn't showing any interest in writing or coloring or anything.
We got outside and walked around some. He mostly did his gumbles but did occasionally break through and say things about clean up, bags, things like that. Now y'all may think I'm stupid, but he is so difficult to understand/grasp, that I really wasn't sure if he was talking about wood, or the garden, and what kind of bags. Eventually he just grabbed a pile of leaves and a Dorito wrapper and I realized he really did mean a trash bag to clean up the garden. I quickly ran to the door to ask someone to bring us a trash bag. We got one and although he needed a little bit of help, he started stooping over and picking up trash and leaves enthusiastically. We filled up a small trash bag. During this time, we had quite a bit of clarity talk, where he was actually making sense a LOT because he was discussing the cleaning up. It's not to say he was miraculously cured for 10 minutes because he still did a lot of his incoherent talking, but he showed more knowledge of reality in one small period than he has in a long time. The fact he was doing ANYTHING was miraculous though since normally he just sits and rocks with his hands together, and does not participate in any activities. I was really, really, really proud that we had used a meaningful occupation to him – cleaning up the garden – and he actually DID something and made some SENSE. I think tomorrow, if weather cooperates, I'll get him out there with some potting soil and stuff and see what else he can do. Granted, when picking up leaves, he had a tendency to not be able to let go – I'd have to wrap the bag around his wrist and then kind of tap on his wrist and pull at his fingers and remind him to let the leaves go. So I'm not sure how much higher-level things he can handle. Anyway.
I crouched down near three people around a table and was chatting with them, and one of them asked me if I was cold due to my long sleeves. I said no, and asked this one woman, let's call her Kelly, if she was hot with all her layers on. She is in her 90s and usually dozing. She said, “Honey, I'm not hot, I'm just crazy.” I LOVED that.
At the end of the day, I ended up taking Kelly to the art room to see if she'd do anything with me. She ended up looking at a coloring book which had a story line, but didn't actually do any coloring. At one point she said “Do you know if my dog is outside? Because she'll die if she is outside.” I assured her her dog was fine. While she was looking at the coloring book, I was cutting out shapes from construction paper. I cut out a bunch of green stems and then various colors of different colors, as well as some hot-air balloon shapes. Tomorrow, I'm going to take the 3 highest functioning participants to the art room, and have them decorate the hot air balloon shapes as well as design flowers for all the colored circles. Then we'll glue the stems and flowers together and tape the hot air balloons and flowers to the very sunny window in the art room. It sounds very simple, but after what I've seen the last few days, very simple is actually pretty hard.
Over the weekend I'm going to kind of formally make up my list of things I've seen or not seen that I think could be altered, as well as work on SOAP notes on my chosen participant, and come up with more OT ideas.
My mom and I talked tonight and she asked me if we could touch the participants. I told her yes, and that in fact everyone is very touchy-feely. There is a LOT of hand-holding and hugs.
Finally, my little bragging moment. The development director was out in the front lobby when I was getting something, and she told me she saw me out there in the garden picking up trash with Bob, and how she was really enjoying watching that and wished she could keep me. She also said FixxyLady has been in a much better mood this week, and I'v
e spent a ton of time with her this week, so I was really pleased to know she recognized that I was working hard to use meaningful activities (occupations) to help the participants.
Anyway….the vast majority of participants and ALL the pca's are amazing and wonderful and sweet…I really enjoy it there and my only wish is that I could have access to the caregivers in order to interview them. I plan to keep seeing Bob and FixxyLady, TRY to interact more with Anguished Wanderer Lady (I'd like to bring her some poetry tomorrow, she loves reading), see what AlwaysHungryYetTinyLady can do, and do some mini group sessions with the higher functioning participants, as well as helping out with normal group sessions and coming up with more ideas for group projects.
Probably the best tools though? A big smile and some gentle sincere attention goes a long way.
Small world…you know how the lady who runs MIFA knew of my blog because one of their PR people forwarded it to her because it showed up as a Google alert? Well I went to a career networking event at my undergrad college tonight (hoping to promote OT) and I met a girl, a fellow Rhodes alum, with a MIFA sticker, and it turns out she does PR, and I mentioned we had to do MIFA, and then we realized she was the one who had sent on my blog. So we were completely unrelated but related. Neat huh. I made two new friends tonight too, both alums, woot woot.
Now I'm going to write my ridiculously long Alzheimer Day Center blog post for the day, and then I'm gonna finalize a communications proposal, and then make about ten handouts if possible for my well elderly project, so that I can focus solely on Tai Chi next week.
PS: Sarah sorry if I was short in my e-mail, I was really stressed at that moment, but I really appreciate you taking the time to share the book information with me, and I hope you have a great trip doing biomedical engineering prep stuff because you are ridiculously smart and overly cool, and I'm proud of you for starting a Future BME blog, okay the end. And oh yeah I will try to get through all my emails asap. lol