I had a meeting with Leo's teacher, primary para/aide, and Supervisors M and E on 10/29. Here is what we discussed, as passed through my somewhat grumpy filter:
We are using icons and visual schedules to help Leelo follow directions and make transitions for such things as: put on shoes, bathroom, wash hands, put on seat belt. They are helping with compliance.
Aggression at Home
Leelo tends to “target” his younger sister Mali about 20x daily, he doesn't get her at all if we can help it, but there are days when he gets her once or twice and then we have to isolate the two as much as we can in separate areas of the house; after an incident we focus on soothing Mali and do not give Leelo any reinforcement whatsoever.
His aggression occurs more often if he has been denied something, or been doing something for a while (boredom). Maybe latest upswing in aggression has to do with Therapist R going on vacation for two weeks, or the fact that Seymour and I have had eight trips between us in past six weeks, or the fact that allergy season has begun in earnest and we have not put Leelo back on Claritin after we stopped giving it to him in the early summer so his system could take a break.
We are taking Leelo for behavioral/aggression/meds/psychiatric evaluation in two weeks. It was recommended that we bring video clips that include incidents of aggression (though this will have to be under controlled circumstances), and repetitive behaviors.
OT at School
Leelo has an OT named Liesl who visits on Fridays for an hour, and who has come twice already. No one knows her last name, or where she comes from. I found out about her just one week ago.
Leelo's his previous OT just sort of didn't come back this year. She thought she'd notified me, Supervisor M, and his teacher, but she hadn't. So the district was out of compliance with Leelo's IEP for the entire first month of school before we discovered this lapse. I kept calling the district and getting no results, so I spent a lot of time on the phone with various occupational therapists (most of whom had wait lists) to see if we could get Leelo some private OT and then charge it to the district. Finally, one very awesome woman -- M. of Firefly OT -- called me back and said that she had two therapists who would be willing to do push-in OT onsite at Leelo's school. I called to let the teacher know and she then told me about Liesl.
There are some communication issues with the district, evidently, as they are the ones who recruited and placed Liesl without notifying anyone officially. Overall this is good news, but I am irritated about busy people duplicating effort.
Leelo's class staff will try to get more information, including contact information, for Liesl.
School staff hard work with 1:1 correspondence is coming along. I notice this particularly at home because Leelo is starting to tell me that he has two ears but just one nose, whereas previously he always had two noses.
Leelo is starting to be able to use past tense (with picture prompts) to talk about what he did that day, e.g., "I ate," "I played" etc.
Copying letters continues to be challenging for Leelo. His teacher uses the Handwriting Without Tears program. His progress has degraded a bit (I have noticed that his written "Leelo"s are not nearly what they were last year) in the absence of an OT so his teacher will see if Liesl can help with this.
His school staff have been working with Leelo daily to introduce two food items -- orange pieces and hard-boiled egg white pieces -- to his diet, using a therapeutic and consistent food tolerance sequence. (I do food tolerance work with him at home using less-preferred foods.) Supervisor M and the class staff consider the program somewhat “stalled” as it is difficult to get Leelo to open his mouth and put the food in (he will touch it, pick it up, kiss it, and rub it on his lips, but nothing further). He is better with the eggs when they're dipped in salt, it was noted.
So, we're all going to take a two-week holiday from food program and resume before Thanksgiving. We will not let him have any of the veggie chips he loves so much during this time and save them as reinforcers for the reinstated program, to provide extra motivation. When food program resumes we will do ONLY 15 trials per session.
I am going to send the girls and Seymour off to his parents' house for Thanksgiving and put Leelo in food tolerance boot camp. It'll be just me and my boy for four days: no therapists, no school, no small children to injure when he gets frustrated after offerings of novel and less-preferred foodstuffs. Our current schedule and home environment never allows for those long windows necessary to become hungry enough to be motivated to try something new. He needs more fresh food in his diet, and some protein besides peanut butter and the eggs in his pancakes.
Leelo is doing well with typing on the computer even though there have been some computer set-up changes since last year. We all need to begin working again with Leelo on word processing, starting with his name (we will ask for OT assistance). He should continue learning to play five new games. Conveniently, I used to work for a children's software publisher, and still have CD-ROM software that will work with the ancient computers at his school. I will send in several.
School Problem Behaviors:
Supervisor M showed us some graphs illustrating that Leelo's aggression incidents are actually fewer now than in spring and summer, about three per hour (this includes aggression towards himself as well as towards others). What she admitted that her graphs didn't illustrate was the occasional Intensity of his outbusts, and how dangerous they can be. The staff should complete incident reports when either Leelo, staff, or another child is injured, and should contact me that day. This discussion was quite effective as Leelo got written up the very next day for pushing another student; I discussed the incident with the teacher and told her that unfortunately in my opinion the safest thing to do is to try to keep Leelo more isolated when he is more agitated. There are a number of continuous screamers in his room; when he's in a good space he can tolerate them and keep working (which is amazing to see) but if he's easily distracted then the screamers make him crazy.
In general, we will all try to be more aware of Leelo's high risk times: For starters, everyone should be on their guard for:
- Attention turned away from Leelo, attention to others, general lack of attention
- Many people suddenly arriving
- Less-preferred direction / demand
- Removal/denial of something he wants (especially straw, certain foods)
- Many consecutive demands without any reinforcement (e.g., during work time)
Leelo consistently takes shoes off on the bus, and most often has them off during school; he is more likely to take them off when the weather is warm. Leelo needs to put his shoes on when he comes off the bus; in general, he should have them on during school EXCEPT when in the motor or sensory rooms, or grooving on the sand between his toes during outdoor recess.
Leelo needs to keep his hands clean and wash them after recess: Leelo currently washes hands upon arrival (after bathroom), before snack, before lunch (after bathroom); while washing, he still needs to wet his hands more thoroughly, and rub them under running water for longer. Staff will help him do additional handwashing in AM, and PM, and will work with Leo to be do a more thorough job.
Transition to Third Grade:
Talked about his placement options for next year. I am fairly bummed that he can't stay in his lovely little wonderful cocoon of a class with his wonderful teacher and fantastic supportive staff. Supervisor M and I will have to start to look around at other classrooms. And there aren't many of them for a boy like ours. There's a third grade class at his school, but so far I've not heard much about it. There are satellite classrooms on a regular campus one town over, which is where two of my friends' kids go, but the campus is totally unfenced. And I was reminded that an "open" campus with a 1:1 dedicated aide may in fact be more restrictive for Leelo than a segregated site like his current school and its rotating staff model, experientially.
Time to start with the site visits.