Leelo During a Lovely Phase

Leelo is in a good space right now, and has been since the year began. I like to think he is where he is because his medications and environment have been adjusted to ideal parameters.

I have not been writing about his and our good fortune for many reasons, one of which is my fear of post-hubris karmic retribution: the storming, aggressive, miserable, sleepless, bottomless-pit Abilified Leelo of November and December brought me as close to despair as I've ever been. While I realize that Leelo's ability to wear his own skin comfortably will wax and wane, I don't want my boy to revisit those dark lands any time soon.

So, for now, delight in our happier Leelo. Sometimes, when we've done something that makes him really really happy -- understanding what book he's asking for, or correctly guessing what activity he wants to do -- he jumps up and gives us bear hugs with locked-on eye contact, and laughs galore. Approaching Nirvana couldn't bring more joy than those moments.

We are fully indoctrinated into the use of visual schedules (mostly a portable hand-held one), and it makes life easy on both sides. Leelo wants to know what to expect, and we are trying not to abuse his unquestioning obedience of icons. As far as he's concerned, those icons appeared via a conversation with a burning bush.

Leo's Portable Visual Schedule

He's still eating too much, but at least he's got more variety than he had in the previous five years. He still eats at least an apple a day -- guaranteeing his health forever -- and is down with raisins and dried cranberries.

His new therapist, V., who started the day after Leelo switched meds and so has not yet seen Leelo in a black phase, is a wonder. It's as though we pulled a Weird Science maneuver for an ABA therapist instead of Kelly LeBrock. More happy days.

Leelo is waking up dry most mornings, and is back to relatively spontaneous pit-stopping. It still may be a few years before he achieves total self-sufficiency, but his overall continuing progress is undeniable.

He has a knack for soccer -- really good eye-foot coordination. He can stop the ball with his feet, and has excellent aim. Goofing around with a soccer ball is now one of our few whole-family activities; one-on-one play with Iz or Seymour (both of whom have skill) is particularly fun to watch.

I removed his five-point harness "throne" from the back row of the minivan in January, for reasons that now elude me. It took me two months to put it back, because I so enjoyed having him sitting on a booster in the front seat next to me (the only other seat placement in which he couldn't get to Mali). I still love it -- we hold hands, sing, talk as much as Leelo ever talks, and have some fairly pure and honest together time. As Jennyalice or Gollum would say, it's precious.

His ability to anticipate musical tones, and keep a beat, is still dead-on. I need to lure someone who really knows or perhaps even teaches music (**cough**) up here to figure out just what Leelo's abilities are and how far he can go. I won't torture you with the vocal exercises I create to test him myself, because then you would have to listen to me singing and then your ears would burst into flame, but I will embed the video which gets him to pogo in perfect time:

He has two camps coming up. TWO! One weekend in May, and one six-day extravaganza in August. He's going to be so happy! The rest of us are too dazed by opportunity to figure out what we'll do with that free time.

At the moment he is the star of his classroom, and is able to stay on task most of the time even when the other students are screaming or otherwise vying for my son's former "most disruptive child" mantle. He is even starting to go on field trips with the big kids.

These classroom improvements mean that he may be able to "spread his wings" (in the words of one of the school administrators) and try out a classroom on an integrated campus, next year. A campus where he and I will have friends, on which the SDC kids have "buddies" and are made to feel part of the campus, where he will have typical peer socialization opportunities, as opposed to his current segregated campus. Fingers crossed. This is an option we weren't considering even two months ago.

We finally got respite hours approved, 12/week. This is more than is usually alotted, so it's a good thing our social worker saw Leelo when he was on a downward behavioral spiral. And even though he's doing so well, these hours are still necessary -- because while Leelo is no longer randomly assaulting people (e.g., his social worker), he is still determined to get Mali. Those two still need a barrier between them at all times.

Things with Leelo are not perfect, but many of us parents with special needs kids stopped gunning for Perfect a long time ago. I'll settle for 90% happy, because that's where we are today.

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  1. Wonderful to hear how awesome Leelo is doing! It'd be fun to have him and A in the same school - maybe even same classroom!

  2. Anonymous10:48 PM


    The prior insurance adjuster in me can't help but ask, "He is not sitting in front of an airbag right??" I can't remember his exact age, but he still looks too short in photographs to safely be sitting safely in front of an air bag.

    Sorry, I couldn't help myself.

  3. Thanks for sharing such a wonderful update. You're right, most us have stopped aiming for Perfect (if we're sane), but this sounds pretty good. Twelve weekly respite hours, two weeks of camp, unquestioning compliance with visual schedules, AND the realistic prospect of an integrated campus next year - all of those sound like elements of nirvana to me!

  4. @doubletrouble -- same school is the goal!

    @Robin, no worries; he becomes tall enough when sitting on a booster.

    @Veronica, the good parts are definitely very very good. And the PTSD from Nov/Dec is starting to abate.

  5. Great to hear Leelo is still doing so well! Do you have any trouble keeping his seatbelt on in the car, or does he pretty much leave it be?

  6. Seriously. Tears in my eyes. I am rejoicing for you and with you. Celebrating the good times.

  7. Anonymous9:45 AM

    So very happy to here life has calmed down for leelo and his mama.
    The right med can make ALL the difference. The wrong one, well...
    And I just knew in my heart that Mr. V would be great for leelo and your family. He is a wonderful person.
    May peace stay with your family.

  8. Am glad to hear that things are looking upbeat! also glad to hear that YOU as a family have respite hours! time maybe to go out and have a cup of coffee with friends or have a night out with hubby.

  9. Whew. It's a gift to have times of calm and happiness. Even more of a gift to be able to step back and recognize them, appreciate them, celebrate them.

    Blessings to you and your amazing family!!

  10. I felt that nudge.

    OKAY am dealing with shitstorm right now but would love to tap in to Leelo's amazing music skills. I am currently funding my training for The PROGRAM to help Leelo - much success has been made with this pattern based piano method with children like Leelo. Of course that didn't stop the teacher who uses this method with autistic children (I think in Livermore) from smacking me down for even asking her about it.
    NO I could not observe how she applies this, and how dare I ASK HER if I TRULY understand SN children, etc....and how could I assume to teach something to children being a newbie to the method???
    Wow. I was so glad I asked her for help.
    ANYHOO.....I am all yours if you want to take a chance on being a guinea pic my dear. Just let me get through another $400 and 40-50 hours of this training....and speak to me in another 6 - 8 weeks about this.
    NOT kidding. I <3 Leelo and want to help him build this bridge.

  11. Thanks again, support crew!

    @gwendomama, looks like it might be time for another Internetty fundraiser? Let me know. I may be able to appeal to other local parents of SNK's who'd like to have their kids be your little guinea piggies, too. (So sorry about the shitstorming.)

  12. It only took court orders (pretty much literally) to get Fox's dad to sit down for home teaching from the district, but we've got Fox on a schedule too, and what a difference.
    Just amazing what a schedule does--it's almost magic, isn't it?

    So glad to read about improvements.


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