Resources: Notes from Leelo's Team Meeting
Here are my notes from Leelo's team meeting earlier today. We covered a lot of ground. Probably the materials most helpful for other parents/caregivers are the sections on compulsive vs. anxiety-based behaviors, and how to manage/prevent crisis situations by modifying school behavior plans for home use. We also discussed implementing a more thorough visual support system for Leelo at home, since he is so skilled with and so centered by using an extensive visual schedule at school.
Leelo Rosenberg Team Meeting Notes 5/1/08
Supervisor E: When researchers did MRIs of people on the spectrum while they asked them to identify emotions, the subjects’ brains didn’t fire up the way typical people do, so it’s really important to use real world emotional models as well as pictures. Otherwise it’s just rote memorization and not generalization.
Squid will make more emotional model photos, esp. of her and Seymour
Improved hand washing. Currently he gets the soap, but then washes it off before he has a chance to lather.
Supervisor M suggests hand-over-hand
Supervisor E suggests turning off the water after wetting hands, or using hand sanitizers and wipes.
TEACH TOWN/COMPUTER USAGE
The current goal of this program is to teach Leelo mouse skills. The games are fun and reinforcing for items that he already knows, like vocabulary and numbers, to introduce new vocabulary, cover gaps, reinforce concepts like “same & different”. It’s okay for Seymour & Squid to use it however we see fit; data collection has not been active since Therapist L left, so other people using the program will not affect any calculations.
Currently most activities result in an on-screen reinforcer, but Therapist R and Therapist L frequently have/had to use tangible reinforcers to get Leelo to tolerate the interval before the reinforcer. Supervisor E suggests modifying the intervals before he gets to the on-screen reinforcer.
Squid & Seymour & Therapist A have not been able to get past the preview mode, so will set aside time to work on figuring it out.
Leelo is currently able to independently navigate Starfall.com and many PBS kids.com programs because he is good at clicking and dragging. Although he will perseverate on many small intervals (one screen over and over) and sometimes needs prompting to get out of these cycles. Supervisor M suggests getting Leelo more varied software to play with, e.g., Reader Rabbit.
The last couple of weeks have been challenging. Lots of aggression and hitting, occasionally escalating to full-scale freak outs with scratching, hair pulling. He is also targeting his sisters a lot, though he resorts to hitting or pushing them and usually does so for the reaction he gets from them or adults around him (Squid tries to comfort his victims without giving him any eye contact or input whatsoever) He is generally less able to tolerate the usual demands we place on him.
Therapist A question: is there a correlation between dropping demands and giving him a less stressful environment; does this contribute to his rigidity? Supervisor M and Supervisor E says only if it happens when you’re in a situation where you’ve asked him to do something and you drop your demand because of his behavior. That is very reinforcing, negatively. Different than dropping your demands across the board when he’s grumpy.
Roots of aggression: Many, many changes in environment: Therapist L is gone and he’s realized that she’s not coming back, pool access is unpredictable, trampoline is off-limits (Seymour has taken it apart to replace worn parts), his school days are longer, allergies flaring, he has been having absence seizures and possible migraines.
Squid talked with his pediatrician Dr. M this morning. She would like us to try dissolvable Tylenol tablets for his headaches, and move from Claritin to Zyrtec for his allergies (Supervisor E mentions that Zyrtec can cause sleepiness, and that we should dose him at night). Note: there is anecdotal evidence that Zyrtec can make some kids hyperactive.
Squid’s litmus for a good school day: When he gets off the bus, is he wearing the same clothes he wore to school this morning? At least he has stopped having the several-times-per-day toilet accidents he was having a few weeks ago, though he did have one at school today.
Existing plan was written for school. Supervisor M brought a copy with highlighted areas appropriate for home guidelines. She wants to work with Therapist E to rewrite it for home.
- Know high risk times.
- Reinforce good behavior using praise, tokens, & tangibles (e.g.: currently he’s having problems with transitions between tasks at school). Supervisor E: “Gentle Reminder” is a pager-like object that can be sent for a predetermined interval (every minute or so) to remind grownups to give constant verbal reinforcement.
- Careful about the attention and not use it when he’s using problem behavior.
- Use of straws: they try to manage straws in the classroom, harder to do during recess. It’s okay if he’s engaging in other things when using a straw. If he has a problem behavior while using a straw: count to five, and then take the straw. He can earn it back by completing a simple task. (Rule at school: he only gets new straws 3x/day [during a 9 – 3 day]; he gets a straw when getting off bus, in the middle of the day after his independent work time, and at end of day.)
- Use of visual aids: Need to start using them at home. They override a lot of problem behaviors because he can’t argue with the icons. He is compulsive about obedience to icons and checking his schedule because they shift control from people to the schedule. He’ll even rearrange the schedule to his liking when he can get away with, which Supervisor M thinks is a good demonstration of thinking and engaging.
- A good start would be “walk together” (icon + phrase) which helps address the bolting.
- Visual Support icons we need for home. We need at least eight copies of each for home. Examples:
- walk together
- stay in car seat
- play with toys
Leelo is starting to refuse to stay in his car seat if he drops a straw, if he wants to take off his shoes, etc.. Yesterday he dove over the seat back and into the trunk because he knew there were cookies in one of the grocery bags located back there. While Squid was driving down the street.
Beg five-point harness car seat back from Jennyalice if possible. Start using icon for “stay in car seat” and give lots of praise (use Gentle Reminder) about what a good job he’s doing sitting in his car seat.
Might be that he will dislike returning to the five-point intensely enough to comply with booster/seatbelt again.
Squid says she will probably have to take out the non-Mali seat in the middle row of the car to use the five-point, as it is very difficult to strap Leelo into it in the back row of the minivan with that seat in the way, but if he sits next to Mali he may hit her.
What do we do to prevent Leelo from getting into a crisis?
When we see him escalate, first thing: straw out of mouth. Immediately give him his name card, then immediately give him an icon card for what he needs to do next.
When people are in an aggression crisis, we should not be approaching them and asking them what’s wrong. We should make sure that person and everyone else is safe, and let them de-escalate on their own. Sometimes they can learn to de-escalate on their own if they have a safe, designated space to do so.
GENERALIZATION of MASTERED SKILLS
Supervisor M has spreadsheet of mastered skills for us to practice.
Supervisor E suggests using visual prompt for “How old are you?” question.
RIGIDITY OR COMPULSION
Important to differentiate between anxiety (“wet” shirt) and compulsion (repetitive behaviors).
How to deal with rigidity and compulsive behaviors. Compulsive behaviors (stretching out car seat strap five or six times, touching everything in certain sequences, etc.). Supervisor M says this may be neurological path that gets stronger every time the action is performed; this is something that isn’t usually an issue unless Leelo is uncomfortable in his skin like he is right now.
Supervisor E says that this is something where you just block the behavior.
With anxiety issues (“wet” shirt) we need to get him through it however we can (reinforcers and distractions). We need to increase his exposure. We can block and delay. We can use the Wait card. We can also re-create the situation while he is doing something highly reinforcing like watching a video. Therapist R says it’s sometimes helpful to talk about it; this helps him relax. “Your shirt is wet. What should we do?” L: “Change your shirt,” introduce distractions; maybe eventually you’ll still have to change the shirt, but maybe not.
Also again with the positive reinforcement: “You are doing a really good job keeping that wet shirt on.”
Leelo has gained a lot of weight in the past few months, over ten pounds since the fall. Historically he has bulked up over the winter and slimmed down over the summer, but in his family’s opinion he is far too chubby right now (over 75 lbs).
Squid thinks Leelo eats compulsively because it’s something he’s mastered and it’s self-reinforcing. At the moment he doesn’t get a lot of food reinforcers; they have been completely eliminated from his home sessions, and he only gets food as a reinforcer for successful BM toileting or to distract him during times of anxiety/rigidity.
Squid thinks that if we were able to distract him more with things he was able to do independently, he might not need to eat so much. She also expressed concern over the amount of snacks made available at school; Supervisor M confirmed that Leelo was being given two bowls of goldfish crackers during snack time. Squid sent in some Veggie Booty today instead.
HELPING LEELO WITH TASKS HE CAN DO INDEPENDENTLY
At home it would be great to have bins in various places for mastered tasks.
Supervisor M distributed lists of mastered and ongoing tasks, as well as checklists for IEP goals.
Leelo has started to be reluctant to take his usual neighborhood walks with his therapists. Squid mentioned that Leelo can walk over two miles on trails, where there is a defined path to follow. She will accompany the therapists on their walks for now and show them how to get to the nearby nature preserve where there is a trail, so that Leelo can hike there.
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