Leelo Status Report: Early June 2009

Yesterday began with a disappointment: The weather report predicted rain, which meant I needed to cancel the planned SEPTAR/families of kids with special needs picnic.

I had really been looking forward to bringing all our kids to a local park and taking it over, would not have entirely minded if the mommies and toddlers that usually dominate decided to leave rather than conceptualize my son and his friends, and had wanted to have a good, worry-minimized outing with all my kids, their friends, and my friends.

Instead, Signora Blog and her family came over for pizza and a rollicking good time, and we all watched the sky not rain. D'oh!

Leo's therapist, V, was here for part of the evening, but left at 7:30. All the kids were still tumbling like puppies in a cardboard box, and Leo jumped right in when SB's son Alfredo encouraged him to come jump on the trampoline. Leo. Playing. With other kids. For a long, long time. Watching them bounce and run made me grateful for just how beautifully Leo is doing right now.

We have documentation, strategies, and next steps for trying to keep that beautifully going.

Seymour and I met with Leo's two program supervisors on Tuesday (Supervisor M runs his program but concentrates on the school angle; she subcontracts Supervisor E to do QA and run the home program; the school district pays for both).

I don't know if it was the caffeine-fueled environment (I love you, Coffee Bar) or just how well Leo is doing at the moment, but we charged through a very full agenda with focus and results. Here are Supervisor M's notes, slightly modified.


Home/home program: Headsprout reading: computer phonics-based, to supplement reading instruction at school.
  • Action: Squid and Seymour will do 30 day trial, consider purchasing 1st half of the program
Reading at school. Leo is only doing about 10 minutes of EdMark sight reading program each day, because Leo's teacher is the only one of the classroom staff trained in its use.
  • Action: Squid and Seymour will request teachers to dedicate more time to teaching Leo to read, less time in unstructured recreational activities with no clear goals (indoor play, walks).
PANTS (and how to keep them up)
All agreed Leo’s body shape not able to combat the forces of gravity; solutions to be tried this summer:
  • Dedicating time to teach Leo to better pull up underpants, then pants, using mirror for feedback
  • Trying alternative types of pants (e.g. zipper and snap, briefs instead of boxer-briefs)
  • Trying a belt
  • Keeping pants cuffed so they don’t get pulled down from being too long
Further slowing Leo down when he eats; Supervisor E noticed great improvement, after not seeing Leo for five months; at school, trying to further slow him by having him chew for 5 seconds prior to drinking water; caution being taking to prevent Leo from becoming insistent/dependent on adult counting.

S: I would note that we have encouraged Leo to take a drink of water between bites, and to "take a small bite." He has made this part of his routine, and now asks us to repeat the quoted phrase before beginning to eat. He does continue to take the smaller and alternating bites for the remainder of the meal. Not sure if this is a negative; at the moment he's not capable of making his own meals and we don't leave him unsupervised around food, so an adult will always be there to give him that first prompt.

Night-time training; preliminary data suggests Leo withholding BMs in daytime and going in pullup on his bed; also suspicion that Leo is often dry when he wakes, and then wets pullup once awake if not taken immediately to bathroom; also drinking a lot in pool/tub- primes him for accidents.
  • Action: Supervisor M will send out questionnaire this month for Squid & Seymour to complete, to gather more info, identify objectives, make a plan.
  • Action: Squid & Seymour will resume the use of food reinforcers for spontaenous & successful BMs during the day.
Behavioral definitions of aggressive behavior and self-injurious behavior: review, revise to make sure we are all describing what we see the same way:
  • Aggressive behaviors- have potential to injure others: hitting, pushing, pinching, scratching, kicking, elbow grinding, head-butting others, throwing materials
  • Self-injurious behaviors- have potential to injure Leo: slapping self on face and stomach, hitting head against surfaces; hitting hands against surfaces;
  • Precursor behavior: stomping
  • Action: Supervisor E to review with Therapist V, Supervisor M to work with Squid to incorporate on google spreadsheet (see below), Supervisor M to incorporate clarifications at school.
Changing emphasis on home programming; shift towards quality of life arrangements, and away from precision programming more typical of intensive early intervention; in general, all programming should: increase access to reinforcement, reduce exposure to situations associated with problem behaviors.

Strategies generally include: using visual supports, maintaining consistency and routines while introducing variety and novelty in controlled, manageable ways, making most of periods of reduced behavior problems.

Squid & Seymour gave examples of how Leo is participating more in family and other activities that increase his access to “life reinforcements,” such as trip to the Maker Faire, hiking with family, kicking soccer ball back and forth with Iz and Seymour for about 10 minutes, playing with siblings on trampoline, took off with Squid to go hiking, stay in motel and swim.

Now is a great time to make the most of Leo's current low rates of behavior in terms of teaching replacement behaviors, social interaction skills.

Leo better tolerating Mali when she is crying, screaming; important first step for replacing hitting others with an actual skill/behavior; consider having dedicated weekly time for Leo to do specific activities with each sister.

Seymour: idea of having Mali participate by sharing materials with Leo, especially things he likes (e.g. getting him his straw, swimsuit to go swim, etc).

Critical to all of the above: repetition. Leo learns best with frequent, brief, repeated opportunities to practice. So:
  • Action: plan regularly for soccer, or hiking, or other family fun.
Squid & Seymour indicated Leo resistant to doing independent work, possibly due to boredom.
  • Action: Supervisor M and Squid will create 6 bins of activities for Leo to do during independent time, possibly including “my busy kits” activities. Bins can be rotated weekly to prevent boredom. About every 2 months, consider adding new materials and toys to keep it interesting, varied, and fun for Leo.
Important strategy for increasing independence, further increasing Leo’s tolerance for new things and changes in routines; Important to expand schedule, and increase Leo’s independent use of schedule, rather than fade it out. Keep in mind- we all use schedules, datebooks, blackberry/iphones to maintain our schedules too.
  • Action 1: continue morning routine, switch “new straw” location, so Leo maintains flexibility around this
  • Action 2: begin using schedule for evening routine or “witching hour”
  • Action 3: next steps to increase independence- Leo should independently travel to schedule, and/or keep modified version of schedule on his person
  • Action 4: Leo should set up parts of schedule in which there is some choice
Revising the online google spreadsheet: make more quantitave for more effective analysis, also quicker to complete.
  • Action: Supervisor M gave Squid sample of more ideal formatting, Squid will implement.


  1. [happy cheers, claps and dances in the background at all times throughout this comment]

    Thrilled plus to read how well Leo is going and thank you for writing out what he is working on, what he will be working on, and the programming involved. It's really helping me review some thing with Charlie----he needs to keep increasing his independent leisure activities, too, and to have continued access to visual activity schedules. Further, teaching a child to use the schedule independently is key; Charlie tends easily to become prompt dependent.

    It was really this year that Charlie started to be pretty much 100% (give or take) with BMs. At school, they have it on his schedule for him to go every 2 hours. But after he gets the card to use the bathroom, he then has to go find a therapist or teacher and tell them he needs to use it, and this extra step of communication seems to be helping.

    Happily thinking of Leo and the other kids on the trampoline, together.

  2. Anonymous7:53 PM

    Just a quick remark re: the pants -- What about suspenders?

  3. @kristina thanks for the reassurance about the BMs. I have confidence that we'll get there eventually, given that his skills slowly but steadily increase, but it's good to hear about Charlie truly arriving.

    @anonymous: Suspenders: We may get there!


Respectful disagreement encouraged.