What does Pandas feel like?

[LNN]

For about 2 years, I've had a dream of developing an "empathy" course for teachers to help them understand what it feels like to be a kid with OCD, tics, ADHD, etc. I'm finally in a position to make this a reality and thought I'd ask for your ideas. In this class, I plan to have teachers experience the discomfort of each symptom and then educate them - not about Pandas specifically, but on each symptom as a condition unto itself. So "here's what it feels like to have OCD" - now here's 5 min of info on OCD, how to treat it, what ERP is, how to help a child cope in the classroom..."here's what it feels like to have ADHD" - now here's 5 min of info on ADHD and coping ideas...

 

The goal is only to help an adult realize that "just stop doing xyz" isn't very helpful to anyone. To get them to apreciate just how hard it is for a kid and to drive home the point that behaviors aren't acts of rebellion.

 

For OCD, I will have everyone put their finger on one eyebrow and rub the hair toward the bridge of their nose (i.e. in the opposite direction the hair normally grows/lies). Then don't fix the hair for 2 minutes and try to concentrate on what I'm saying, not on the discomfort of the eyebrow. This is what it feels like to have "feels right" OCD - you just need to make things feel right before you can concentrate on something else. Next, I'll have everyone dip their index finger into a cup of honey. Rub fingers together. Then leave your fingers sticky for 2 minutes while needing to write, shake hands, use an object that's recently been made sticky by someone else - this is what it feels like to have germ contamination OCD. You just have this overwhelming need to clean your hands.

 

For sensory processing, I'm going to pin a small, bunched up ball of Tulle onto the back of your shirt and ask you to concentrate on my lecture as you get annoyingly scratched by the Tulle. I may put a pebble in your shoe and tell you not to fidget with it. I may play an amplified tape recording of the hum of flourescent lights.

 

For tics, I'll talk about how people can get itchy just from the power of suggestion. I'll go on about how just talking about being itchy can make you want to scratch your nose or cheek. How the need to scratch can become very distracting. Yes, you can suppress the urge to scratch for a time, just like you can suppress a tic for awhile. But the distracting urge to scratch doesn't go away. Then, when I finally tell you you can scratch, you'll probably have the need to scratch like crazy, just like the way someone with a tic will tic like crazy when they finally get to tic in a safe place.

 

I need ideas on how to make someone experience ADHD, anxiety, "senior moments" where you knew something but now can't recall it, rages, etc...

 

Does anyone have any ideas on how to make someone experience these symptoms?

[emmalily]

This might be a little technology heavy but could you make an audio recording of intrusive thoughts, put it on a cd player or mp3 player for the teachers and have them listen to it for five minutes while they try do a particular activity? I think that's one of the hardest things for non-OCD sufferers to grasp, how completely out of control thoughts can get, just popping in out of the blue.

 

This is great--so glad you're getting a chance to do this!

 

emmalily

Edited January 5, 2013 by emmalily

[pr40]

Great idea. The difficulty in explaining how PANDAS feels is that one has no control over those "feelings" and behaviors. As I understand it, our ds and dd's "personality" is not there when they are in an exacerbation. They even look different, possessed in some ways. So, how do you represent possession to someone else who had never experienced it?

Tolstoy in Ana Karenina has this great character that is possessed, Nicolai Levin, brother of one of the main characters Konstantin Levin.

there are, of course, other literary accounts of possession. I am not sure that that is what you had in mind, though.

[LNN]

No - I don't want my audience thinking I'm crazy by bringing up "possession". I'm not even trying to explain Pandas. My goal is broader. I want to teach teachers what it feels like to have a hidden disability - regardless of cause of label. Remember Doug the Dog in the movie "UP" when he's talking and all of a sudden he looks away and says "Squirrel!" - totally distracted by the sight of a squirrel. That so explained ADHD to me.

 

What I'm looking for is short exercises that leave someone with an idea, a feeling, that will come back to them when they're in the shower, or in the classroom a week later, or while they're grocery shopping. Give them "AHA" moments of understanding. Not trying to educate them about any particular disease or its cause or even it's treatment, as teachers aren't really in a position to tell parents how to treat their kids. What I want is to give the teacher an idea of what any of these symptoms feels like to a child and help them feel empathy.

 

For example, I've tried to get some adults to do the eyebrow thing and they immediately say "No way!" with a little fear in their body language. My first reaction is to try to goad them into it, because I so want them to experience my "lesson." Which is the same thing a teacher is tempted to do when a child won't participate in a lesson - they try to belittle the fear or feelings the child has with an "oh, it won't be bad, you'll see" which of course causes the child more fear and gives him a feeling of not being understood or respected, feeling powerless and wanting to avoid even more. I want the teachers to understand what it feels like to be goaded when they have a fear, so that maybe next time, they'll be more sympathetic.

 

So this isn't a Pandas-specific class. This is more general.

 

Emmalily- what sort of intrusive thoughts loop would you create - a loop of "you are a bad person, you have no talent, you're dumb..." or would you go with more extreme thoughts?

[smartyjones]

LLM - i'll try to go through my notes -- there was a seminar at the DC OCD conference -- i think about anxiety -- something like what if you discovered your child was missing, but you were not able to contact anyone or do anything about it and you had to go through your normal day with everyone expecting you to act normally -- yet you were horribly worried and feeling as if you need to act.

 

anyone else have that scenario posed more eloquently than i just did -- if not, i can go through and find it after the weekend. KaraM - i think i remember you were there for that - ??

 

i think she also had some stats about anxiety being more commonplace than ADHD.

[MomWithOCDSon]

I think Emmalilly's loop tape is a great idea! In our experience, relative to an academic situation, it would play something like "This is hopeless. I'm never going to get all this done. I'm going to make mistakes, and then I'm going to have to redo it. And my pencil feels sticky . . . I bet somebody else used it. I can't use this pencil, but I don't have another one. I can't do this. I can't use my pencil and I'm never going to get it all done anyway. This is hopeless," and on and on and on.

 

For the ADHD/ADD piece, maybe you could have a video running on a screen in the front of the room in one corner, while you give instruction or read a chapter from a book in the other corner, instructing the teachers to ignore the video because what they need to focus on and remember is the information you're delivering at the same time the video is running.

 

Or maybe you could "be" the ADHD yourself, as you're leading the class, bouncing from subject to subject, changing your position in the room while talking, thus requiring the students to constantly shift their focus, the position of their bodies (turning their chairs, etc.).

 

Anxiety is so personal, so summoning up "faux" anxiety may be really hard. One thing that occurs to me, but may be really hard to pull off, would be to arrange to have a fire or smoke alarm go off, or a fire truck or an ambulance pull up outside the window of the classroom, and then just keep your lecture/talk going, as though there's nothing unusual. I'm sure that would induce some temporary anxiety in some of the participants, but I suppose it could also go horribly wrong, tipping somebody too far in that direction. That's what I get for thinking out loud and not censoring . . . .

 

What a fabulous undertaking, though, LLM!! You go, girl!!

[Kayanne]

Great Idea!

 

How about trying to ask the audience to recall the last time someone jumped out and scared them...and explain that someone with panic disorder can't shut that scared feeling off? I thought about actually scaring the audience, but I'm not sure that would be wise...

[LNN]

Yeah Karen, I thought about telling them some horrible story, like "imagine your spouse is on his death bed and you need to deliver a speech to the governor and smile for photographers and...." but not sure how graphic or morbid I want to get. It's one thing to illustrate a point, but another to get people so upset that they miss the other 95% of the message.

 

One idea for explaining how people with obsessions/rituals get upset when rituals are interrupted - how many of us take a shower and do things in a certain order. I personally start with my hair, then my back, etc. Have you gotten halfway through your shower and not been sure if you washed the body part you always start with? Do you shrug and move on, or do you re-start your shower routine from the beginning? I re-start. That's what it feels like for someone whose ritual is interrupted. Or I imagine how it feels for someone who has autism or aspergers and they need things in order, with structure. Mess that order up and they can't move on until order is restored.

 

For the urinary frequency, where teachers always say "but he JUST went!" - How many of us women (sorry Dads) have gone to the bathroom then walked out of the bathroom, sneezed/coughed/laughed and wet our pants - even tho we JUST went a minute ago. Our kids get that urge and worry about having a "leak" and so need to return to the bathroom to make sure they're really empty (part physical contraction, perhaps part OCD "checking" ritual).

 

So what am I missing?

OCD - eyebrow, honey, loop tape of intrusive thoughts

ADHD - may have my phone alarm go off while I talk over it, or make an audio of various noises (birds chirping, kids at a playground) to play while I talk over it

Sensory - tulle on the back of your shirt, sound of fluorescent light amplified, pebble in shoe

Tics - talk about itches, yawning, the urge to sneeze

 

Dysgraphia? - writing with your opposite hand?

memory/cognition loss - ?? talk about senior moments? Trying to take the SATs with a bad head cold?

Rage - remind moms of how we've all lost our tempers over things we knew were stupid at the time yet yelled anyway? PMS?

Anxiety - what are things we, as adults, dread doing and try to avoid? What makes our hearts pound?

[MomWithOCDSon]

One idea for explaining how people with obsessions/rituals get upset when rituals are interrupted - how many of us take a shower and do things in a certain order. I personally start with my hair, then my back, etc. Have you gotten halfway through your shower and not been sure if you washed the body part you always start with? Do you shrug and move on, or do you re-start your shower routine from the beginning? I re-start. That's what it feels like for someone whose ritual is interrupted. Or I imagine how it feels for someone who has autism or aspergers and they need things in order, with structure. Mess that order up and they can't move on until order is restored.

 

Perfect example! This is actually what used to happen to my DS when the PANDAS was high. So he'd spend hours in the shower (if we didn't lose patience and drag him out, literally) because he couldn't remember if he'd washed this part or that part, so he'd keep starting over! Aarrgghh!

 

Dysgraphia? - writing with your opposite hand?

 

Or writing with your primary hand, but in an awkward position, like having the paper turned 45 degrees from the angle you would normally set it at. Or maybe writing from right to left, rather than left to right . . . same letters, same words, but having to process the act in a completely foreign way, like our kids feel when PANDAS interrupts their processing dramatically.

 

memory/cognition loss - ?? talk about senior moments? Trying to take the SATs with a bad head cold?

 

As in, where did you leave your keys? Where's your cell phone? What did you just walk into that room to get? Also -- for good, bad or otherwise -- anybody in here ever had a bad hangover after that fabulous wedding reception or holiday party? But the kids still want breakfast the next morning, and they still need help with their homework or finding their mittens to go outside and play, even though your head is fuzzy and sore and everything feels like 200 times the chore it normally would.

 

Anxiety - what are things we, as adults, dread doing and try to avoid? What makes our hearts pound?

 

Public speaking? Flying on an airplane? Going to that parent-teacher conference or 504/IEP meeting? Defending a thesis? Taking a driving/brokers/CPA/professional exam? Sending your kid off to school on his own the first time? Watching him drive away in the car on his own for the first time? Sitting, watching the clock 15 minutes after curfew and he's not home yet?

 

Gee whiz! I just realized . . . my kid makes me very anxious!

Edited January 5, 2013 by MomWithOCDSon

[emmalily]

 

Emmalily- what sort of intrusive thoughts loop would you create - a loop of "you are a bad person, you have no talent, you're dumb..." or would you go with more extreme thoughts?

 

You know, the funny thing with intrusive thoughts is that they're not always bad...I think we tend to talk about the bad ones because they're scary, but when in exacerbation I have different types of thoughts pinging into my brain all the time. So I think you could use some negative ones but also some positive ones...anything that would be distracting and random. And make them try do a math quiz while they listen They're always worse in the math test, aren't they ?

 

Also, just thinking about how to express anxiety--perhaps you could have them run in place for a minute or two and then have to stand absolutely still. That feeling of your heart pounding while trying remain outwardly calm, that's a pure anxiety attack right there

[SSS]

Well, everyone here has summed it up beautifully, nothing I can add, except personally I have anxiety attacks (not frequently) and they are physical to me-

trying to calm breathing, heavy chest, trying to clear my head-

 

Also, LLM, when you write up your beautiful piece here about empathy and understanding OCD, PANS, et al

Could you please CC me a copy?

I need to tape it on my refrigerator door to refer back to in dealing with my daughter, thanks ;-)

[Missmom]

You could talk to the teachers and talk about medical issues. For example, let's say you are doing a monthly breast exam and you feel a lump in your breast. You immediately call your doctor to get an appointment but they can't fit you in for at least two more weeks... You then start to fixate on the lump and feel it every day wondering if it is growing or will it go away. Then your anxiety grows worse and worse every day until you know for sure if you are going to be ok. It is all you can think about until you have that reassurance Is your health.

 

I think this is the same type of anxiety our children feel everyday, until we give them the reassurance they need.

 

Anyway , just my two cents.

[kleek3]

LLM,

 

I just want to say thank you for doing this. Right now we aren't experiencing school issues. It's when we return home about 3pm that all h@&L breaks loose. Dr. T used an analogy with us the other day, he said its kind of gross but the tool is effective. Take the Gent who has a habit of picking his nose. He suppresses it all morning at his office, when he gets into his car, he is in a safe place to pick away. This is how we theorize DS4 behavior at school. He behaves the best he can because he knows what is and is not acceptable behavior in class. Then when he returns home he lets loose when he can no longer suppress the behaviors. Not sure where or if this fits your teaching. It has helped me understand a bit more.

 

KK

[Guest Alyssa]

It feels like a horrific cloud that comes over me suddenly and destroys every aspect of who I am. My personality, my behavior, my ability to move. It's like being possessed.

[KaraM]

Sorry to take so long to get to this...I still would have to look back at my notes to get more details.

 

The scenario she mentioned was just what you said, but she did it in stages if I remember correctly.

 

First, she said "imagine your child has been missing for 12 hours and you were expected to do your work as if nothing was wrong.

 

Then, after she got us to visualize that and feel it this best we could, she said, now imagine your child has been missing for a few days. Your house is filled with police officers, news casters are outside. You are frantic with worry.

Then, someone asks you where the milk is. (Aaaahhhhhhhhhhh.....It's in the f######g refridgerator!!!!!!! Where the f### do you think it is! What a stupid F#######g question!)

 

(I don't necessarily think that was very "eloquent," but you get the point... )

 

She compared this to a child in school who has OCD and who is so worried and scared about whatever they are obsessing about and about performing their compulsion. Then, in the middle of all this the teacher asks them to find something or do something. This might help explain why a child would respond to a teachers request in an angry or frustrated way.

 

She really tried to get us to visualize this situation and gave it time to sink in. Of course the room was full of parents, so you may have to modify for teachers that aren't parents and get them to just think about someone they truly love and care for and who is also somewhat vulnerable or dependent on them.

 

 

LLM - i'll try to go through my notes -- there was a seminar at the DC OCD conference -- i think about anxiety -- something like what if you discovered your child was missing, but you were not able to contact anyone or do anything about it and you had to go through your normal day with everyone expecting you to act normally -- yet you were horribly worried and feeling as if you need to act.

 

anyone else have that scenario posed more eloquently than i just did -- if not, i can go through and find it after the weekend. KaraM - i think i remember you were there for that - ??

 

i think she also had some stats about anxiety being more commonplace than ADHD.

Edited January 8, 2013 by KaraM