There is just so much shit going on with Leelo that I have to spew it out here, or sit on the roof and howl. Which might confuse the coyotes. We've got good, we've got bad. We've got a humongous entry. Go get some coffee.
Leelo has been a crazy boy since last Wednesday. So much so that we had to cancel his Thursday therapy sessions. His schedule, supplement regimen, and diet are constantly fluctuating, making it hard to pin down any one cause (though it's amusing to read all those accounts of parents painstakingly introducing one modification per week so as to record results--we don't have time for that shit). I think his regression is due to either the addition of Ascorbic Acid (last Tuesday) or having to up his pear juice/sugar intake to mask all those foul-tasting supplements.
To get the official opinion, I called Leelo's DAN/biomedical doctor. He said that Leelo's marked reaction means our boy didn't get properly desensitized to Ascorbic Acid, even though the BioSet practitioner said Leelo was clear. Dr. P implied that the not-his-wife BioSet practitioner (who has been working with Leelo lately) may not be as good as his own wife the BioSet practitioner, and that we should have the wife redo the Ascorbic Acid desensitization. I'm skeptical of the whole you-should-really-give-my-wife-more-money thang, but am okay with two fewer pills per day for now.
The boy's oral tendencies are also getting out of hand. He's always got to have something in his mouth, which lately means chewing and sucking on his clothes. I'm wondering if maybe he has some sore teeth or cavities---he really really hates getting his teeth brushed, and refuses to open wide enough for me to have a good look--but don't really want to think about that as there's no way he can go to a regular dentist. One more thing for the list: find an autistic-kid friendly dentist.
Another to-do item is getting Leelo a neurological exam. Somehow I missed that one, or blocked it out. Temple Grandin's excellent book Thinking in Pictures suggests that kids like Leelo who "aren't there" or space out a lot may be experiencing low-grade but brain-damaging seizures. On re-reading Stephen Edelson's essay about what he would do if his child was diagnosed with autism, I realized that the neurological exam was one of his first action items. Fine, fine, fine. More fun to fit in his schedule.
But hey, we had a schedule victory today, to my amazement and delight: the occupational therapist who evaluated Leelo two weeks ago has an opening in her schedule during the only slot we could possibly manage. Hurrah! This takes the edge off her report, which rated most of Leelo's physical abilities as between one and two years delayed. He got no points for being a speed demon, which is totally unfair.
His speediness was not entirely a good thing today either, as it was an all-day, Leelo-centric photo shoot and many shots were missed. My friend JM the kick-ass photographer documented Leelo's doings from before they boy woke up until he got put to bed the first three times. The results will be made into a book, just as they were for Iz two years ago. (Write me if you'd like to see the online version.)
As the day wound down, JM rather hesitantly asked if we had had a typical day. No, I assured him, we don't go through that every day. I mean, every Monday means driving Leelo across town for school and then back home for one therapy session and then lunch and then another therapy session and then a facilitated playgroup with Iz and R and then our crazy Monday playgroup, etc. But, on a regular Monday Seymour isn't up all night being ill, I have help getting the kids fed and dressed, Seymour drives Iz to school, Leelo isn't too nutty to attend to his therapists, Seymour isn't lying in bed too weak to attend to his own needs, and Iz doesn't have a sugar-induced meltdown during playgroup (my fault, I brought Halloween cookies). An exhausting day. JM might be rethinking any yearnings for squallers of his own.
The coda to Leelo's day is the encouraging report below, written by Supervisor M. I gripe about her sometimes, but she is a phenomenal program director. If she had delivered this report in person, I would have kissed her feet.
LEELO ROSENBERG: Summary Progress Report and 10-Week Program Review
STUDENT: Leelo Rosenberg
DATE OF BIRTH: 11/09/00
PARENTS: Squid and Seymour Rosenberg
DATE OF REPORT: 10/22/03
Leelo is a 2 year 11 month old boy who was formally diagnosed by the Regional Center as having mild to moderate social language delays, and is considered to have autism. He lives with his mother and father and four-year-old sister. Due to chronic ear infections, he had tubes placed in his ears in April 2003. Since that time, he has also been attending group language and play therapy with clinician A.M. at Associated Learning and Language. An initial educational evaluation for intensive autism services was conducted in June 2003 by Spectrum Center. Since August 2003, Leelo has been participating in an intensive Applied Behavior Analysis (ABA) program designed to facilitate learning in children with autism.
When Leelo began the program he had a limited attention span of about 30 seconds for most activities, and was not responsive to his name or to simple directions. The initial program has focused heavily on increasing his attention span, and his attention to language and actions of his therapists, parents, and other people in his environment. In addition, emphasis is placed on facilitating his verbal communication, beginning with making requests and social greetings. Further, program features and instruction have been designed to promote generalization of Leelo’s skills as they are developing. Leelo receives up to 24 hours per week of instruction. Instructional procedures include Discrete Trial Training (DTT), Natural Language Paradigm (NLP), incidental teaching methods, and a facilitated play group. In addition to ongoing supervision, data analysis and program revision, other components of the Leelo’s program include bi-monthly team meetings with parent, both therapists, and program coordinator; 12 hours of initial training for therapists, family, and friends; quality assurance by an outside expert; cross-professional communication with therapists/teachers in other settings; prospective placement consultation. (See program components chart below).
- LEELO ROSENBERG’S INTENSIVE EDUCATION PROGRAM COMPONENTS
- Intensive Instruction up to 23 hours/week
- Facilitated Play Group 30-45 minutes/week
- Program Supervision (includes ongoing coaching, data analysis, and program revision) up to 5 hours/week
- Team Meetings 2 hours/month
- Initial Training 12 hours
- Quality Assurance up to 4 hours/month
- Cross-Professional Communication (includes observations) up to 2 hours/month
- Preschool Placement Observations 2 hours
Since the beginning of program 10 weeks ago, Leelo has mastered 33 items. His mastery data suggests he is responding to DTT instructional methodology.
In general, Leelo learns new tasks best when a sequence of ‘most to least’ prompts is implemented and systematically faded. That is, therapists initially provide Leelo with the most intensive level of prompt, ensuring his correct response. After a specific number of trials, depending on Leelo’s response, they fade back to lesser prompts, eventually eliminating the prompts while maintaining Leelo’s correct responding.
As Leelo has become increasingly responsive to instruction, his need for many trials with additional prompts has been reduced. This is evidenced in his mastery data below. Whereas tasks introduced in the beginning of the program often required one to two months of instruction, with slow and systematic prompt fading, more recently Leelo is mastering new tasks in three or four days.
TASK DESCRIPTIONS: Tasks and instructional procedures are described below. Tasks are considered mastered when Leelo responds correctly to the direction without any additional prompts, the tasks are presented in an interspersed fashion, or mixed with other tasks, and the tasks are presented in a DTT setting, unless otherwise specified.
A. Greetings: In discrete trial setting, therapist says ‘hi (student’s name)’ and student responds ‘Hi (therapist’s name)’. In generalization context, when seeing therapist, student initiates ‘Hi (therapist’s name)’. Leelo may echo therapist’s initiation, so therapists have used echo prompt procedure and systematic fading, using a time delay. Leelo has mastered responding ‘hi’ and ‘bye’ in a discrete trial setting, and has mastered responding with a name ‘Hi L___’ and ‘Bye L____’ in a discrete trial setting. He is working on initiating greetings in context. Generalization: Leelo is working on greetings during his facilitated play group, and at home with a variety of people.
B. Eye Contact: In discrete trial setting, therapist says ‘(student’s name)’, and ‘Look at me’. Student is expected to look up, and to sustain eye contact for gradually increasing periods. Generalization: Student makes eye contact in real life context when variety of people call name and say ‘look at me’. Therapists began task using edible reinforcer at eye level on each trial. With systematic fading of reinforcement prompt, in a discrete trial setting Leelo has mastered eye contact in response to ‘Leelo’, and to ‘Look at me’ for one second, and two seconds. He is working on responding to ‘Leelo’ and ‘look at me’ in context.
C. One-Step Directions: In discrete trial setting, therapist gives simple verbal direction, and student responds accordingly. Generalization: Student follows directions in real life contexts, with family members, teachers, peers, etc. Leelo has mastered five directions, including ‘hands down’, which he is currently responding to in context. Generalization: Leelo is working on following directions in context, during his facilitated play group.
D. Imitate Actions with Objects: In discrete trial setting, therapist says ‘Do this’, and models an action with a toy/object. Student imitates model. Generalization: Student uses skills in variety of contexts, including during play with peers, and during small and large group instruction. Leelo has mastered 8 actions with objects. Generalization: He is beginning to imitate his sister and peers in the facilitated play group. He is imitating both actions worked on in DTT, and novel actions.
E. Receptive Body Parts: In discrete trial setting, therapist says ‘Touch (body part)’. Student touches correct body part. Leelo has mastered 7 body parts. Generalization: Systematic generalization for receptive body parts has not yet been implemented, due recent confusion in skill acquisition in a DTT setting.
F. Saying ‘All Done’: Student initiates ‘all done’ when he/she feels finished working at the table. Generalization: student initiates ‘all done’ in a variety of settings, with a variety of people. Leelo has progressed from spontaneously leaving the table every five seconds to one minute, to now spontaneously stating ‘I’m all done’ when he is finished with something. He also spontaneously uses ‘I’m all done’ in structured play contexts with therapists, and with parents in a variety of settings.
G. Saying ‘My turn’ to access toys: In discrete trial setting, therapist takes a turn playing with toy/material. Student spontaneously says ‘My turn’ to access toy. Generalization: Student spontaneously says ‘my turn’ to access materials with a variety of people, in a variety of situations. In discrete trial setting, Leelo is beginning to initiate ‘my turn’ to access toys. Generalization: therapists create a variety of opportunities for Leelo to say ‘my turn’ in context.
H. Pretend Play: In discrete trial setting, therapist says ‘pretend to ...’. Therapist models pretend behaviors, sounds, and actions with toys. Student follows direction/model. Generalization: student pretends in play contexts, student pretends with other children. Leelo has mastered 3 pretend actions, including pretending to be a lion and a cat, and pretending to sleep. Generalization: Leelo is beginning to use pretend actions during less structured activities, and in his facilitated play group.
I. Natural Language Paradigm (NLP): An ABA procedure used to increase imitated and spontaneous language. Leelo consistently imitates two words, and is working on imitating 3-word phrases using NLP. In addition, Leelo is beginning to do NLP with his sister and a peer. During NLP, Leelo also spontaneously uses 2 words or more about 20% of the time during NLP.
J. Making Verbal Requests: In both discrete trial and all other settings, student will spontaneously make verbal requests for things he/she wants. Leelo was saying ‘I want ____’ with his parents when he began this program in August. He now uses a variety of prompted and spontaneous requests with parents and therapists, including
‘I want _____’
‘Give me _____’
K. Spontaneous Language: Therapists and families use incidental teaching methods to provide rich opportunities for spontaneous language. Leelo is beginning to use language for a variety of purposes, including describing objects and people, describing actions, making requests, and asking questions. His spontaneous utterances are typically about 3 to 5 words, and can be as long as 8 words. He uses language with his parents and his therapists, and is beginning to talk with his sister and peers in his facilitated play group. Spontaneous language data is collected throughout Leelo’s program sessions, and by his family.
L. Facilitated Play Group: Leelo has participated for 3 weeks in a facilitated play group, which includes his sister and a family friend (both 4 years old) as peers. During the group, the peers learn how to play with Leelo by using getting Leelo’s attention, using NLP, using short phrases, and helping him to imitate play behaviors and ideas. Leelo’s goals include sharing with peers, initiating and responding verbally to peers, pretending with peers, and greeting peers. He has recently begun to do NLP with his peers, and was able to imitate up to 6 phrases and spontaneously verbalize with peers in a recent session.
Skill \ Introduced \ Mastered
1 Responds ‘Hi’ in DTT \ 8/28/03 \9/9/03
2 Responds ‘Bye’ in DTT \ 8/28/03 \ 9/9/03
3 Responds ‘Hi (name)’ in DTT \ 9/15/03 \ 10/16/03
4 Responds ‘Bye (name)’ in DTT \ 9/15/03 \ 10/16/03
B. Eye Contact
1 1 second in response to ‘Leelo’ \ 7/31/03 \ 10/7/03
2 1 second in response to ‘Look at me’ \ 7/31/03 \ 10/7/03
3 2 seconds in response to ‘Leelo’ \ 10/8/03 \ 10/14/03
4 2 seconds in response to ‘Look at me’ \ 10/8/03 \ 10/14/03
C. One step directions
1 Hands down \ 8/1/03 \ 10/6/03
2 Stand up \ 9/10/03 \ 10/7/03
3 Give me a hug \ 9/10/03 \ 10/9/03
4 Give me a hi-5 \ 9/10/03 \ 10/7/03
5 Stamp feet \ 9/24/03 \ 10/8/03
D. Actions with objects
1 Put block in bucket \ 8/28/03 \ 10/15/03
2 Push toy car \ 8/28/03 \ 10/9/03
3 Drink from cup \ 8/28/03 \ 10/15/03
4 Roll playdough \ 9/9/03 \ 10/9/03
5 Feed doll \ 9/17/03 \ 10/6/03
6 Put on hat \ 9/17/03 \ 10/9/03
7 Brush hair \ 9/24/03 \ 10/6/03
8 Kiss doll \ 9/24/03 \ 10/6/03
E. Receptive Body Parts
1 Nose \ 7/31/03 \ 10/7/03
2 Knees \ 7/31/03 \ 10/15/03
3 Head\ 7/31/03 \ 10/13/03
4 Elbow \ 9/17/03 \ 10/8/03
5 Tummy \ 9/18/03 \ 10/7/03
6 Feet \ 9/24/03 \ 10/9/03
7 Eyes \ 9/24/03 \ 10/13/03
F. Requesting to be ‘all done’
1 Initiating ‘all done’ in DTT \ 8/28/03 \ 9/17/03
G. Pretend Play
1 Pretend to be a lion \ 9/24/03 \ 10/15/03
2 Pretend to be a cat \ 9/24/03 \ 10/15/03
3 Pretend to sleep \ 9/24/03 \ 10/14/03
H. Natural Language Paradigm
1 Imitate two word phrases \ 8/1/03 \ 10/2/03