One was a testimonial for the local regional center, as they want to reduce his respite hours by two-thirds. If we are to avoid that cut, we needed to detail just how difficult Leo makes our lives. This writeup, though brief, was a painful exercise.
The other document was a "Leo cheat sheet" for the school we're hoping Leo will attend in the fall. Leo is going to tour the school tomorrow, but before then the school staff wants to know what Leo's like, how fantastic he is, and what his strengths and challenges are.
The thing is, both the testimonial and the cheat sheet are 100% true. Both of them. But the former is a negativity distillation, the second is a loving, pride-filled declaration of Leo as a whole.
I could choose to live my life as though the respite testimonial was my only reality as Leo's mom. But that would be a lie. I have a choice. And I choose positivity, I choose honesty, I choose to see the best in my son.
We all have that choice.
Leelo is a sweet boy with autism who unfortunately cannot be let out of visual supervision at any time, and needs active monitoring during his waking hours to keep him from injuring his sisters, soiling himself, or destroying household property. His current allotment of XX hours per quarter reflects this need. A reduction to XX hours per quarter would cause hardship for our family.
Currently we use Leelo's respite hours for activities that are challenging or impossible when Leelo is at home, such as:
2) Making homemade meals instead of purchasing them (latter is much more expensive)
3) Attending church
4) Spending one-on-one time with Leo's two sisters, who are otherwise in perpetual duck-and-cover mode.
Leo is currently at Loma Prieta, a segregated County elementary school site for children with severe behaviors. We are in the process of transferring him to The World's Most Fabulous Autism School, an even more restrictive site, in part because their student population includes children with severe behaviors up to age 21. This will help with the long-term management of Leo's behaviors in a school setting, but not at home.
Leo's behavior has warranted a Behavior Intervention Plan for the past four years. I have attached the most current version.
LEELO ROSENBERG CHEAT SHEET
PERSONALITY AND PREFERENCES
Leo is a sweet nine-year-old boy who laughs easily, especially when people engage him.
- He loves music, "scatting" and having people imitate/engage him, stories with repetitive rhymes, "dancing," paging through books, simple puzzles, playing on his iPod or iPad, swimming, straws, hiking, and jumping on trampolines
- We call him "The Cobra" as he is very wily and will quickly steal other peoples' food or straws. Beware!
- He likes to eat: vanilla yogurt, PB&J sandwiches, croissants, pancakes, fruit smoothies, cheerios, Burger King french fries, apples, and bananas. He enjoys Pirate Booty and Goldfish crackers but they give him indigestion except in limited quantities. We try to limit his sugar and chocolate intake as both are overstimulating. However he loves any kind of pastry or cake.
- He is very smart when it comes to routines whether through instruction or observation; once he learns a routine he rarely needs prompting unless it is a less-preferred activity.
- Leo can attend to tasks for up to 20 minutes.
- Leo has good receptive language, especially with requests involving objects (e.g., "Dude, your shoes need to go back in the closet"). However he is not yet typically conversational, and struggles with abstract or non-concrete topics.
- Leo's expressive language is mostly requests (he speaks “fluent requesting”), descriptions/observations (“India is crying”) and responses to direct questions ("The circle is … blue."). He is currently in a period of echolalia, which we suspect is helping him process language.
- Leo knows the names of all letters, numbers, shapes, colors, etc.
- He can recite numbers past 20 in sequence. However 1:1 correspondence is an ongoing challenge.
- He can read his first and last name, and a few other words
- He can write "Leo."
- He can type in his first and last name and other personal information.
- He is spectacular at sorting/categorization/matching.
- He enjoys doing jigsaw puzzles.
- For further information, please see his IEP documents.
- Leo can dress himself from head to toe. He sometimes puts his clothes and socks on backwards, but will adjust them correctly if his error is pointed out.
- He does not wear clothes or shoes that require buttoning, tying, belting, or snaps. He is working on mastering zippers.
- Leo wears underwear and can use the toilet completely independently. At school he may need reminders to:
- Go every hour
- Stand up to pee
- Wipe adequately if wiping is needed
- Flush toilet
- Wash hands
- Straighten clothes afterwards
- He occasionally has accidents when he is stressed, however other accidents are generally intentional/an escape technique. Again, they are rare.
- Leo does not yet have the fine-motor skills to manage zippers, buttons, etc.
- Leo can hold a crayon/pencil and write his name.
- He is an absolute expert at navigating on an iPad or iPod.
- Leo has very good gross motor skills. He is good at climbing, running, swimming, and jumping, and has excellent balance. He can ride a tricycle and a scooter.
- His upper body strength is not as developed as his lower, and so he needs to be encouraged to hang from bars/trapezes, etc.
- Transitions can be difficult. Both verbal and visual cues/reminders are helpful. Leo is a pro at using an extensive visual schedule.
- If Leo is upset, he will hit his own head. Sometimes if he is really frustrated he will push other people. Reminding him to check his schedule or distracting/redirecting is usually helpful.
- Leo is currently taking the medication Risperdal to help manage his aggressive and self-injurious behaviors.
The photo above is Leo at the Monterey Bay Aquarium, in a mood. He's not always smiling. And that's okay, neither am I.