The Little Extinct Princess

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Mali makes a book almost every day. They're always hilarious (intentionally or no) and a good peek into her brain. Here's the latest:

"The Litele Princes"

"They thougt in Fairy Tales"

"That princesses were extinct! [-> dead princess]"

"But there not!"

"The End!"

The ways in which she makes us fall on the floor laughing (again, usually unintentionally) come so thick and fast that I can never remember them all. The latest was her complaining during this weekend's family + Godfather Michael trip to Fort Ross that she didn't approve of our day's "sequence." 

I think she has a future writing Fantasy/Sci Fi. 

To a Wonderful Young Man on His 20th Birthday

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I want you to know that you have been surrounded by love since the moment you were born.

My dad made a video of your birth day. Not the birth itself, but the first few hours after. I wish you could see the video, understand that the day you were born was a swirl of great joy, of openness, of possibility. My entire family and many of my friends visited, even though they knew you were going to live with another family -- they still wanted to see you, celebrate you, and welcome you into the world. They said so, on the video, with squeals and smiles and laughter. They thought you were amazing, every yowling ruddy 5 lbs and 10 ounces of you. So did I.

You may not know that you stayed with me in the hospital for the first 24 hours after you were born. I wanted some time to hold you and be with you before handing you to your parents. And I did, you know. Hand you to your parents.

I've never regretted it. Your parents were good people, and I'm guessing your dad still is. They cocooned you with love and pride, and gave you everything your biological father and I weren't mature enough to offer.

But I did watch that birth day video, frequently. And today, on your 20th birthday, I went to watch it for the first time in ten years.

I couldn't find it. I spent an hour looking for it.

I have no idea where your video is. I may have gotten rid of it, during one of my infrequent but earth-scorching sentimental paraphernalia purges, perhaps to honor my children by severing ties to maternal conflicts of interest. It may have gotten lost during one of our moves -- I could have sworn that we put together a box of video tapes when we jumped houses three years ago, but that box is currently imaginary.

I cried, hard, when I realized your video was lost. I felt ill. It was the only video I ever had of you.

So I hope you'll forgive me. I had hoped to show you just how loved you have always been, and what an amazing entrance and first act you had.

You'll just have to believe me.

Happy birthday.

Once Again: I Couldn't Be Prouder!

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Our family spent the morning hanging out with a very nice person who had never before met my kids. I tried to caution this person about my kids beforehand (all three: charming/intense/girls can be rotten). I tried.

The girls decided to have an analog chat session while we adults and Leo were interacting. I was proud of Iz and Mali for being so independent, and calm. While we were gathering our things to leave, and while I was briefing Leo on our next few moves, The girls handed their chat session to our companion --- and insisted it be read before we parted ways.

Our day was a non-stop whirlwind, so I didn't get a chance to read their efforts until we returned home several hours later. Which was a good idea, because when I just about fainted I could do so on my own couch and not on the concrete floor of the Ferry Building (later, when I can tell you who we were hanging out with, you will understand).

Here's their transcript:

And here is what it says (Black = Mali, Red = Iz):

• Why are you MEAN to me Izzy?
• I'm not! :) Why are you mean to me? :( 
• Because I hate you!
• That's not very nice. :,( tear [Mali scribbles it out]
• I'm going to tell Mommy!
• You are being mean. Why are you being so mean? X-(
• What are you goin [sic] to do about it?

Mali is five. Iz is eleven. Which one of these girls has the upper social manipulation hand, do you think? We need to smother Mali with positive behavior examples and reinforcement, I think, so she doesn't end up falling in league with Bad Horse.

Also: I really shouldn't go within a mile of SF's Isotope Comics  -- the owner James is too charming,   engaging adults and kids with equal enthusiasm. But now I have Marvel: House of M, which is on the list of Marvel background reads my friend Skye insists I cover before going anywhere near Secret Invasion.

Also: Screamin' Mimi's in Sebastopol has Maker's Mark ice cream. The flavor is perfect, and made me feel like I was tippling mid-day -- almost as good as the real thing on a long, road-tripping day with all three charming/intense/rotten kids in tow.

Also: My article on Leo & his iPad was written up on MacDailyNews. That's cool, right? 

Also: Keep reading The Thinking Person's Guide to Autism! Incoming essays from Christa Dahlstrom, Kim Wombles, Squillo, and many more.

Leelo and the Children on the Merry-Go-Round

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Leo has socializing opportunities aplenty -- around town, with all the people and kids who come to visit and swim and cook with us, during excursions. But those interactions are all heavily managed, to help him avoid sensory overstimulation, and so he won't pull a frustrated HULK SMASH on me, his sisters, or unsuspecting passersby. It breaks my heart to write this, but: he is not a free-range boy, not in scenarios where other children are running wild. It's too risky.

So when he asked to "go play, play with the kids" who were swarming the merry-go-round at Franklin Square playground today, my initial reaction was no. HELL NO. Not just because Leelo is unpredictable, but because -- as I suddenly realized -- I don't trust other children to be kind to him.

But he wanted to go. He was desperate to go, to be part of the puppy pileup of his-aged kids. He kept saying, "Want to play, want to play!"

Ours is a boy who rarely asks to play with other kids. How could I say no?

I said yes.

Off he ran. He dove straight through the outer ring of children, and positioned himself in the center of the merry-go-round. I stood nearby, reminding myself to breathe, ready to spring, explain, apologize.

I never had to.

The other children accepted Leo at their center, without question. No one said anything, or gave him funny looks, not even as he his siren-like crow of delight grew louder as the kids spun faster, faster, faster.

Look at this ecstatic boy-in-the-middle:

I'll be watching this video on YouTube nonstop for the next 48 hours.

Parents, if any of those children belong to you, please give them extra hugs from me. They're amazing.

Today was Leelo's first day of summer. I hope it has set the tone for the next two months.

Rattled!

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It's that time of year: the kids' three different school calendars are closing out, one by one. Mali's last day was Friday, Leo's last day is today, and Iz's last day is Thursday. We no longer have a kindergartner, and never will again. *Sob*. The smaller people in this house protest going to sleep while their room is still lit from outside. We held Leelo's transitional IEP for the school he'll start attending in the Fall. We'll be gleefully piling ten peoples' allotment of camps, vacations, boat trips, weddings, conferences, and book launches onto five peoples' shoulders.

No wonder some of us feel a bit rattled. And so how appropriate that Leelo almost stepped on this enormous western diamondback rattler during our weekend hike:

We've got some fantastic posts up on The Thinking Person's Guide to autism: SLP Jordan Sadler's thoughts on what prognosis means for your child, Jean Winegardner's (Stimey) classic essay The Autism Path, and today's Laura Shumaker anecdote and list of tips about our boys and puberty. We've got essays from Kev Leitch, Kristen Spina, Mike Stanton, Kim Wombles, and many others coming down the pipe. Worth your time. Have a look. Spread the word. Pitch us an essay.

I also wrote an essay for BlogHer on the many ways in which Leelo rocks his iPad. Robert Rummel-Hudson kindly contributed his perspective on iPad/AAC device IRL venn diagramming. Also worth a read, if only for the many many cute videos of Leo kicking iDevice ass. Okay, here's one video:

The girls, meanwhile, are totally addicted to the iPad; we're having to use TimeTimers. But there is much non-app fun happening. Here's our girl with the "Zoobo" hands and feet she developed so that she can tap on big peoples' shoulders. A preview of the kind of creativity and verve I hope all our kids get to revel in this summer.

Our Friends the Bees

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The Leelo's Explosive Awesomeness Autism Show

TweetHere's what I did yesterday:

• Launched The Thinking Person's Guide to Autism book/blog project with Jen, Liz, and Emily. We're going to be a little bit of Snopes for the autism community. And we want the community to participate, too, so ping me to pitch a post.
• Wrote a BlogHer article on finding feminist mentors so girls like Iz can continue to love superhero comic books without internalizing their objectification of women.
• Got invited to read my My Baby Rides the Short Bus story at a bookstore in Manhattan August 7, 7 PM, details forthcoming, Jen's reading too!
• Put Leelo to bed in underwear -- not pullups -- for the first time in his life.

Guess which one made me the happiest?

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We're still flying high from Leo's acceptance into what Jennyalice calls "Wunderskool."

Now the only issue is whether we'll be allowed to retain the behavioralist services of Supervisor M. I think it's reasonable to reduce her hours given how well-suited the school will be for Leo, but as they do not officially use a behavioral approach and Leo can have crappy winters, I think it would be reasonable to engage her on a limited and transitional and need-based basis. I hope the school district agrees. Our transitional IEP is in three days; we'll see then.

As for how Leelo did during his Wunderskool tour: we walked in and they whisked him away before I'd even, finished signing in. I freaked out a bit -- there has never before been such thing as casually handing Leo off to strangers -- but he didn't mind, so off he went.

I waited in the office, showing the staff Leo's iPad and blowing their minds a bit, and then ... Jen showed up! And listen to me fret a bit. And then had her own meeting with the school district.

Halfway through Leo's visit a class aide came in and asked if Leo had any dietary restrictions, I said no but he was picky and I brought him a sandwich, they said no worries, if he didn't have restrictions then he could have snack with the rest of the class ... and he did. Whoa!

Then a few minutes later they brought him back, said he was wonderful, and that ...he was in on the spot! YEAH! Community! Friends! Community! Good autism school! Community!

Then Jen and I took Leo to lunch - at the OMG gargantuan, SoCal-style mall two blocks from the school. What a contrast to the sad sad piddly malls in our own county.

The restaurant gave Leo a kiddie activity book. He used to ignore them completely, but now he will do dot-to-dots, coloring, and drawing. His current favorite things to draw are a rainbow and a happy face, so I asked him to draw both. And then for fun asked him to draw legs. He did (!). So I asked him to draw arms. He... did! So Jen asked him to draw fingers, and he drew five (Jen watched him count them out), and then by request he drew shoes, hat, ears with whorls inside... so, what what the hell else can this kid do that we just haven't asked him about yet? Of course I left the drawing at the restaurant but I'll have him do it again on DrawFree and share it right here!

Then we took him to a brick and mortar shop I've been trying to hit for almost a year because they make the shorts that fit him best but not all of their shorts fit him best and sometimes it's hard to tell which shorts are which on the website. Leo not only tolerated being in the store (though he did ask to go back to the car) but ... tried on clothes! I think it was his first time ever. If not, still huge - especially as he did it all with verbal prompts and no protest over the fairly illogical process of being asked to remove his pants and try on other pants and then put the original pants back again. I was especially impressed by the deft way he was able to take off the pants both time *while keeping his underwear on*. One of those skills that seems straightforward but for a kid who struggles with motor issues and planning ... it was impressive. Much like Saturday when he told me he was all done swimming and ran out of the pool and into the bathroom and hopped in the tub - and I told him "Leo, no bath" because it was mid-afternoon, and he looked at me like I was an idiot and proceeded to hang up his bathing suit over the bathtub spigot so it could dry - just like I normally do for him but he had never done before.

Then we walked back to the car. Along the way  I bought three more things at three different shops (ear buds with a mic so I'm not just yapping right at my laptop screen when I record interviews, the Aveda facial lotion that smells so lovely that even Seymour loves, and a 2-shot latte) and that was a good reminder that I hate malls not just because they're temples of needless consumerism but because I am helpless before them. Leo tolerated it all.

We're having lots more good days like that, lately. In which even the bad was good -- earlier that morning Leo got mad at me for denying him extra food and gave me a push; when I then told him I was sad and made a sad face, he came over and hugged me. That's new. Can't tell if it was emotional or observation of proper ways to react but I'll take it either way.

A maturing, growing boy.

Totally New School!

TweetI tend to be liberal with the OMGs due to my SoCal upbringing, but this one - this one is legitimate:

OMG! Leo got into The World's Greatest Autism School! YEAAAH!

This is something we've been working on for a while - I met with our school district rep for permission to explore the option (the new school is an NPS, a non-public school, which means that we can't pay for it - the school district has to), then Supervisor M and I toured the school together, then a rep from the school visited and observed Leo at his current school. Yesterday was the last step, in which Leo spent time in his potential new classroom.

They were supposed to take time with their decision, but when they returned him to me after an hour, they told me they loved him and were accepting him on the spot!

Isn't that what we all want to hear about our kids, no matter what kind of kid they are?

Seymour and I are thrilled. Thrilled that Leelo will be in a place where he is appreciated, supported, pushed, and expected to succeed. Thrilled that our kid will be at a school with several of his friends - which means we'll know other families, unlike at his current school. Thrilled for the existing parent community, support groups, fundraisers, motivated and energetic staff -- just thrilled.

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To be clear - Leo's current school has the motivated and energetic staff too. :) But it's not specifically an autism school.

Choosing the Cheat Sheet

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I recently had to write two documents summarizing my Leo.

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.

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RESPITE TESTIMONIAL

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:

1) Housework/laundry
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.

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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.

LANGUAGE

• 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.

ACADEMICS

• 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.

SELF-CARE

•  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.

MOTOR SKILLS

• 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.

CONSIDERATIONS

•  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.

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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.