12.25.2008

A Very Good Christmas

Leo on Christmas Day

No better Christmas gift than family and friends who make the effort to spend time hanging out with Leelo amidst the chaos of ten kids from four families at our house for a full turkey-and-good-china Christmas dinner, and who all pitch in to clean up afterwards and leave us with a sparkly clean kitchen. Seymour and I actually sat down for part of dinner *at the same time* thanks to Leelo help from my cousins JP and DD.

Seymour and I are both beyond exhausted, beyond stretched, so I didn't think today could be anything other than a tolerably stressful Christmas. But because of the wonderful and supportive people in our lives, we were able to snatch moments of real pleasure and real joy, and enjoy both our food and our excellent company.

I hope you were able to snatch some real happiness today, too.

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12.21.2008

ReadKiddoRead!

MotherTalk/MomCentral is currently hosting their best blog tour ever: James Patterson's ReadKiddoRead. (James Patterson being the author of the Maximum Ride books coincidentally and currently being devoured by my daughter Iz.) I would have been interested even without the Amazon gift certificate the tour organizers dangled in front of me.

If your kid is anything like my kid, and not content to have books on hand, or to go to the library on Mondays, or to surf the Amazon.com "also boughts" for recommendations, if your kid wants more more more book recommendations all the time all day long, and isn't satisfied by Newberry credentials ("Those books are all so depressing, Mommy! Everyone always dies!") then ReadKiddoRead is a godsend. If you're simply interested in a well-organized resource for finding your kids nice meaty, enjoyable books to read, then ReadKiddoRead will merely please you immensely.

James Patterson talks about the idea behind ReadKiddoRead:
"A few years ago, I realized my son, Jack, didn't exactly love books. We'd always read to him as a baby, and he was beginning to read for school. When he got home, him going to the shelf and picking up a book was about as likely as his pulling out a notebook and solving quantum physics problems. Actually, the latter was more likely. He's a smart kid.

"So Sue and I took it on ourselves to fix the problem if we could.

"Starting that summer, and every summer since, we went out and found books that I was pretty sure he'd not just read, but would love to read. That was a big part of the inspiration for READKIDDOREAD."
Judy Freeman, the site's primary reviewer, has this to say about why ReadKiddoRead is so important:
"James Patterson’s mission is to get kids hooked on unputdownable books that will lead them to other unforgettable books that will launch them as lifetime readers. Naturally, to become a reader, you need to be surrounded by good books. There are more than 5,000 children’s books published every year. How on earth do you figure out which ones are the best ones to read to or share with or recommend to your children? That’s where ReadKiddoRead can help.

"We’ve tried to help make your job easier with this website, culling a select list of cutting edge books we believe your kids will love. We couldn’t review every exemplary book out there, so included with each title is a list of more treasures (If You Loved This Book, Then Try) on the same theme or subject or by the same author, that will keep kiddos reading and exploring.

"Will every single book listed here ring your child’s literary bell? Well, no. That would be impossible. Children’s book tastes are far-ranging, just like yours are. So, we’ve gone through thousands of books to come up with an eclectic mix, balancing historical, hysterical, drama, fantasy, contemporary, mystery, suspense, animals, fictional, fact-ional, and then some. We think it’s a compelling assortment of titles that will really pop. Some are more for girls than boys, or vice versa; others are more universal in theme.

"I like to tell kids, “Everything you read makes you smarter and makes your brain grow. But if you always read the same type of book, your brain will develop an unsightly bulge. You need to try a bit of everything.”
Aside from thoughtful book recommendations for kids of all ages and inclinations (I especially appreciate the understanding that some five-year-olds are ready for books like City of Ember), the site contains interviews with authors such as Julie Andrews, links for getting free books, and (warning!) access to the dangerously slippery slope that is Shelfari.

The main is nicely organized into four main reading levels, each with four sub-categories of recommendations, but it is not infinitely deep in terms of the number of books. This is okay -- there's a lot of additional current and potential meat in the Ning, so don't forget to join the increasingly lively ReadKiddoRead community and help this potentially amazing resource grow and flourish.

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The Rosenberg Rollercoaster of Six Weeks Past

Found a draft documenting one of the most brain-exploding weeks of the last while, in terms of stress, logistics, work, etc. overload, and posted it as-is, under its original time stamp. Want it documented that I would not have survived that week without my wonderful friends.

Meanwhile the house is full of nieces and nephews (ages 1, 2, 4, and 13) and brothers and sisters-in-law and my mom. And my mom's very well-behaved dog.

We are having a good time, but it is very very very stressful (though it seems Leelo has little interest in tiny children who are not Mali). I am trying to get more help with Leelo so that Seymour and I don't become holiday stress casualties, and I don't end up in the urgent clinic with chest pains that turn out to be an anxiety attack, like I did last year. Though last year we hosted a bunch of parties during the holidays as well; this year we are not being nearly so stupid. We are only having super-large Xmas Eve and Xmas dinners. EASY!

Seymour and Mali will leave after Xmas to spend a few days with Seymour's parents; the day after they return we will send Iz to play in the snow with her cousins for a few days (and perhaps she will stop moaning about being "the only person I KNOW who has never been skiing!" even though I've told her that most of people we know do not and have never skied, because of the expense, logistics, unpleasant weather, and/or free time required.)

Interviewing a new therapist in the AM, to potentially replace Therapist R, who is going back to school.

Leelo has apparently gained 5 lbs since he started Abilify. We need to figure out how to get him more exercise.

Leelo is still getting up at 5 AM or earlier, consistently.

Xmas gifties and cards, not getting out on any kind of timely schedule. Which is fine, I'll give myself until New Year's. Or longer.


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12.18.2008

The Sheer Awesomeness That Was Autism Twitter Day

Check out PF Anderson's analysis of the social media juggernaut and pure awesomeness that was Autism Twitter Day. For context, a quote:
For comparison with other trending topics, today the 100 page archive for Obama goes back 4 hours, for Santa 6 hours, Xmas 5 hours, and for iPhone 4 hours. The day of the Autism Twitter Day event, the stream of discussion about autism was so intense that twice during the day it outstripped every other topic on Twitter. For one December day on Twitter, autism was bigger than Obama, bigger than Xmas, bigger than Santa. WOW.
Thanks again to Bonnie Sayers of Autism Family, for the creativity and sheer force of will that conjured Autism Twitter Day from the social media ether. I hope it will be a yearly event.

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12.16.2008

Food Tolerance

Hey Tweeps! It's Autism Twitter Day! Click through to a very worthy cause:

Autism Twitter Day

Back to our regularly scheduled program:

Sage, who is both a dear friend and Leelo's SLP, came over on Wednesday night before Thanksgiving. She had agreed to work with Leelo on food tolerance, and had waited weeks for me to fill out formal documentation to set up the program. So, while I suspect she may have also come over to keep me and Leelo company while Seymour and the girls were spending their first night in Las Vegas, she was also there with a purpose.

She sat me down and had me fill out an inventory of what, exactly, it is that Leelo is eating. Which is:

REGULARLY
  • Peanut Butter and Jelly Sandwiches (smooth PB, small bit of jam, most breads are fine)
  • Whole wheat croissants from the Campbell Baking Company
  • Bananas
  • Naan Bread
  • Cheerios
  • Pretzel sticks
  • Bisquick pancakes that Mommy makes, hot off the griddle only, often with grated carrots mixed in
  • Burger King french fries
  • Rice milk with vitamin, calcium powder, and probiotics mixed in
  • Plain crust french bread
OCCASIONAL SWEET TREATS
  • Soy yogurt (stolen from sisters, sole food eaten with a utensil)
  • Fruit smoothie from Espresso Lane
  • Sweet plain lassi (Indian yogurt shake)
  • madelines
  • cookies
  • donuts
  • chocolate chips or plain chocolate
  • Odwalla Superfood (green) juice
LESS PREFERRED
  • Corn/tortilla chips
  • "Ritz" crackers
Sage looked over these foods, and said that Leelo tends to like things that are crunchy and sweet or salty. There was nothing in this group that had the texture of the boiled eggs whites or orange slices we'd been trying to feed him for the past months. She suggested we try:

  • Finger foods
  • Avocado (texture like banana plus he used to eat it)
  • Dip apple in yogurt or honey (he may like dips of treat foods like soy yogurt)
  • Crunchy dried fruit
  • Salted Roasted Nuts, especially the drier almonds
We're still coasting on them apples. He's not a fan, but he will eat them. And, as Abilify has increased his appetite to crazy levels -- he has gained five pounds in three weeks -- I think we'll need to start having him eat more of them apples. And perhaps fold in a new item from Sage's list, after the holidays.

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12.14.2008

Blotto!

I know why I'm tired. I know there's not a whole lot that can be done to fix my tired, or Seymour's.

I also know that those of us who are stressed find it easy to judge other people and become righteous, because we know that we, or our friends, have it worse financially or logistically or emotionally.

Oh, wait, that last one doesn't count, does it?

It should. I tend to believe people who confide that they're overwhelmed, even if their scenario appears less intense than mine. Because I'm not living their life, or trying to keep their bubble from popping. I wrote about our tendency to compare and judge stress levels somewhat thoughtfully in July. In this, a less thoughtful moment, please know that those with uncharitable comments about the steam-venting and consternation-processing that follows can fuck right off.

---

Abilify at its current dose does not seem helping Leelo as we'd hoped. It has been three weeks, and so far we are seeing:

1) Increased irritability, manifesting in more intense and focused bouts of aggression
2) Constant hunger/unrelenting requests for food
3) Increased spaciness/distractedness (as noted by teachers and therapists)
4) Increased sleepiness after taking the drug, but
5) Early waking, at or around 5:30 AM. Occasionally as early as 3:30!
6) Poop witholding! Even with resumed extensive teletubby toilet time

This means that, when Leelo is home and without an aide, which is most of the time, I do very little aside from monitoring him so he doesn't hunt down Mali and deck her, distracting him from asking for food, or trying to get him to stay on task. There is very little successful setting Leelo up with activities while I get things done. This means I currently spend very little time with his sisters. The girls are put out to the TV pasture or sent into their room to play.

This means that even making a simple dinner is an exercise in panic, as I monitor Leelo and his activities on the counter, the girls wherever they are, and ensure that they do not cross paths. I almost had a heart attack when Iz had her friend Violet over for dinner two days ago, trying to play the role of the cheerful mom who was providing a regular fun dinner for the girls (make-your-own paninis) while surreptitiously keeping already-fed Leelo from attacking me from behind.

This means that we shouldn't go anywhere with Leelo. At the moment I'm not even taking him to the grocery store. I certainly am not doing any errands with him and Mali in tow, not even our previously ritualized Tuesday morning run to the local coffee shop.

This means that it's not a good idea for us to have people over, not unless they're aware of what they're potentially getting into, and have heightened perimeter awareness and fast reflexes. Iz's friends are starting to realize that our home is not the happy fun place to visit that it used to be, which makes me worry for Iz's social life. I am not sure what we're going to do with my Mom, two brothers, and all of their families spending over a week of Xmas joy with us.

I am so scrambled that I didn't make my bed yesterday, for the first time in over a year. That activity, superfluous as it seems, is a sanity watermark for me. Even on days on which I've forgotten to brush my teeth because the bus forgot to pick up Leelo, my bed has been made. I can walk by my bedroom and feel a flash of satisfaction that one small part of my life, at least, is tidy and neat and predictable. But sleep deprivation and overwhelm have stomped out what remains of my already lackluster organizing skills, and not only did the bed not get made, but I forgot about it until I was running out the door to get the three kids to their three different morning destinations and had no time to go back. I am trying to keep a list of all the everything I'm supposed to be doing, but it is so overwhelming that, instead of picking a list item after Leelo goes to bed, I generally decide to watch an episode of crappy TV (and instantly fall asleep on the couch anyhow). It's taken me three days to finish this post, and I have a slag heap of unfinished moans from the past month. The only manageable time is now, in the mornings, while the girls are still in bed.

I am really sick of being hit, head-butted, scratched, shoved, and pinched. And of flinching when my son is nearby. Emotionally sick. Because, occasionally, Leelo is still being sweet and snuggly and giving kisses and asking for hugs, and being the wonderful boy we love. But that Leelo is currently missing more than not.

Dr. R, Leelo's meds doctor, suggested that Leelo's current dose (5 mg) might be insufficient, and recommended that we try dosing him another 5 mg in the morning as well as in the evening. Supervisor E concurs, and said that in her experience an insufficient dose of a drug like abilify can exacerbate rather than alleviate behaviors.

So I have given Leelo a morning dose of abilify today. I hope it helps, hope we have an even slightly more sociable and settled Leelo by the time relatives arrive on the 19th.

And in the continuing theme of whimpers rather than bangs, I dutifully record that this is my 2,000th blog post. Woo-fucking-hoo. I had certainly hoped Leelo would be a happier, better adjusted boy by now. Maybe by post 3,000. If we make it that far.

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12.13.2008

Obvious/Needs

See if you can figure out why snowflakes like this make my kids extra-happy:

What's So Special About This Snowflake?

(All hail exacto knives!)

And in very sad news for my internal teenage self, the Vespa I won in a raffle has gone off to live with someone who will actually ride it:

The Vespa That Wasn't to Be. *SOB*

But in happy news for Leelo, Therapist E and her Boredmaker software came over today, and we cooked up the following icons to supplement Leelo's visual schedules. I hope hope hope they help help help:

wake up
awake
toilet
get toilet paper
get dressed
put on shirt
put on underwear
put on socks
put on pants
put on jacket
put on hat
make bed
harness
backpack
bean bag chair
hike
walk
walk together [group]
sit on stool
eat
drink
downstairs
upstairs
brush teeth
brush hair
dental floss
put clothes in hamper
take a bath
wash hair
dry with towel
dry hands
put on pajamas
put on pullup
take off clothes
bedtime
haircut
dentist
doctor
puzzle
lacing beads
book
match
library
sort
draw
write
match
shape sorter
piano
music
computer
watch tv
trampoline
tricycle
bike
basketball
soccer
wiggle car
wagon
pool
go swimming
bathing suit
towel
goggles
sunglasses
headphones
music [CD image]
pet kitty
close door
open door
hug
sit on couch
sit on chair
tactile ring
big ball
play catch
clean up [put books away]
clean up counter
Mommy's van
Daddy's car
turn off light
turn off water
slide
swing
playground
teeter totter

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12.12.2008

Searching for Third Grade

Leelo has hit the age/grade ceiling in his current K-2 placement, and so will need to move on next year. Seymour and I are visiting classes, and began our quest with the 3 - 5 across the hall from Leelo's current classroom. Here are my notes:

Teacher C seems cut from the same cloth as Leelo's Teacher M: Calm, unflappable, kind, and knowledgeable.

The classroom seems like the logical next-step extension of Teacher M's class. It is arranged in a similar fashion, with the same kinds of stations and visual schedules. However as these are older children the schedules are much more text-based than in Teacher M's class. There appears to be more academic learning going on. It is of course (also like Teacher M's) a behavioral class, and most of the students are autistic.

Teacher C mentioned that her goal is to get the kids' behavior managed, so that they can transition to a less-restrictive environment. To that end, she has two higher-functioning students who will be transferring to less-restrictive classrooms in the immediate future.

Because the students are larger than those in Teacher M's class but have similar behaviors, Teacher C tends to ask for male aides. She says that the staff changes frequently, much like in Teacher M's class (e.g., only three of Teacher M's paras stayed on from last year).

Not all of the students require 1:1 aides. The current ratio is five aides for eight students.

All of the staff are trained in CPI (http://www.crisisprevention.com/program/nci.html) for the managing of violent behavior. If the students act out, Teacher C has them take a cooling-off break in the fenced play yard outside the room. If their behavior was a result of an attempt to escape a demand, they will be returned to task after the cooling off period.

Teacher C's class has weekly field trips and outings. They also attend campus dances. This would definitely give Leelo more social outlets than Teacher M's class.

Overall, Teacher C's class seems like a reasonable fall-back plan if a more appropriate third-grade classroom for Leelo is not identified before the fall.

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12.10.2008

Change in Program

I wonder if I should keep Project Manager on the list of active skills on my resume. Consider the hours of phone calls, coordination, discussion, and synthesis that went into this email to Leo's team:

Wanted to keep you abreast of how things are looking for Leelo's home program. Please let me know if I've gotten anything mixed or wrong.

As per a discussion with Supervisor M yesterday, it is in Leelo's best interest to keep weeknight hours as respite only. Leelo is very tired after a long day of school and on the bus, and does not do his best learning at that time. Best to transition his ABA program hours to the weekends.
[It is my hope to reduce these hours if we can get Leelo's behavior under control. Right now safety is a huge concern.]

I just got an email from Therapist Y saying that he is transitioning to a new job and will no longer be able to work Thursday nights, effective immediately. He may be available to help with extra hours during the Winter break. (Anyone else who would like to work extra hours, please let me know!)

Therapist R is transitioning to full-time school in the new year, and at that point will only be working Wednesday nights.

Therapist A is willing to consider working Monday late afternoons instead of weekends, starting in the new year.

Therapist M is available to work Friday late afternoons (except one each month), starting in the new year.

Therapist V was recommended by Therapist A and her good friend SLP R. Therapist V is a six-year 1:1 aide veteran of a local intensive autism center. He would very much like to take over Leelo's weekend ABA programming as well as do respite on Tuesday nights. As he also has just taken a new job, he will call the next few days to let me know which days and hours he actually has available.

Please let me know if you have any questions.


As usual, things are nuts here. We're living an iceberg life, with only a fraction of it surfacing on this site or indeed in IRL discussions. But in general we are good, always sleepy, and never bored. Not a horrible mix, necessarily.

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12.07.2008

Phonetically Speaking

Mali has a thing for the Jenns in our life. She really loves asking me to txt them for her.

Usually I type in her dictations, such as "Tell Jenn I said 'Hi' and that I am Dr. Alice Bunny!" or "Jenn I want you and Sophie and Willow to come over today and I love you and I miss you."

Yesterday she wanted to text a Jenn while I was sitting at a table in a booth at our local winterfest, realizing that registering for the National Bone Marrow Donor Registry took more than sixty seconds. Since I needed her to sit still while I filled out the three pages of information that would give the registry the best chance of being able to find me for the next twenty-two years, I opened my phone's keyboard and a text window, and told her to have fun.

She asked me where the N and the K buttons were. I showed her how the Back and Space buttons worked. I told her that the "juh" sound she was looking for in one of the names was a J, not a G. And that was it. She typed these four names, with spaces, independently, exactly as appears below:

Gen kate shon jak

(That would be Jenn, Katey, Sean, and Jake.)

The funny thing is, she's just now starting to be able to form written letters, so I didn't consider that she was nevertheless intellectually able to write. Her noggin is churning at a pace not matched by some of her fine motor skills. It's fascinating. And you'd think, after so many years of trying to find the best ways for Leelo to communicate, that I'd have more consideration for such matters.

Guess I'll let her spend more time at the keyboard.

12.04.2008

Prop 8: The Musical

For those of you who, like me, live in holes and so may not have experienced this transcendent deliciousness:

See more Jack Black videos at Funny or Die


Bible literalists, if you're going to use The Book to justify your condemnatory stance on homosexuality, then please also consider selling your daughter to me. The Bible says you can; Leo's team, Seymour, and I all agree that we could use some more help around here; and a slave would generate none of the paperwork necessitated by IHSS. Thanks! *Cough*dickheads*cough*

12.03.2008

Jenny McCarthy the Carpetbagging Autism Lottery Winner

Yesterday's mail included a Jenny McCarthy article from a well-meaning friend of my mother's who wanted to know my opinion on everyone's favorite Warrior Mother.

I emailed her back, and told her that Jenny McCarthy's son is not like my son. And when people assume that our sons are alike, that I haven't tried to "save" my son, it makes me angry.

I wrote that basically, Jenny's son won the lottery, and Leelo didn't. So, of course there is some jealousy there, because who doesn't want to hit the jackpot? I want Leelo to feel comfortable in his skin, like her son. I want him to have the ability to tell me what he's thinking, what he wants, what would make him happy, what would keep him from being so frustrated and anxious all day long. But I am not bitter or resentful about Jenny's son's development, because I have observed the developmental trajectories and family efforts of enough children with autism to know that Jenny lucked out, that she got a kid with a variation on autism that is nothing like Leelo's.

But most lottery winners know that their good fortune came through luck, and they do not go on national TV telling other hopefuls how they, too, can be mega-winners. They do not ignore researchers who tell them that while there may be a system for winning the lottery in the future, right now all we can do is keep playing.

I don't even begrudge winners like Jenny for making more money by telling their own story. We all have that right. But she should know better than to exploit desperate wannabe-winners by selling or promoting products that will help them win, too. This is carpetbagging, this is peddling snake oil, and -- unless she intends to pull a Paul Newman and donate proceeds to families still struggling with autism -- this is vile opportunism. And it disgusts me.

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Merii Kurismasu!!

Seymour created these mangatars of our family for our annual (excepting last year) holiday communications. He did a splendid job with the details, as those of you who are IRL friends can attest.































Meanwhile Iz is sad that I forgot to put out our Advent box and its twenty-four drawers of tiny treats. But she assured me that missing the first three days was not insurmountable, and that I should set it up today. I told her I'd think about it, if she swore not to tell her sister that it was me, not Santa, who finds all the perfect little gifties that light up each Rosenberg December morning.

12.02.2008

Abilified

Slightly polished rough draft from a few days ago.

Leelo's first ten days on Abilify have been rough. Its sole benefit has been soporific -- we watch in disbelief as Leelo gets so sleepy that he puts himself to bed, earlier than usual (i.e., at his actual bedtime). Seymour pointed out that this drug may be completely altering Leelo's perception of the world, and we need to give him time to adjust to how the world now seems to him.

Aggression/self-injury. I don't think these incidents have increased in frequency, but they have increased in intensity. When he loses it and goes after someone, he *really* goes after them. There's no bluff or intermediate tapping; he goes for the full-out assault, for instance getting a bead on Mali from across two rooms, going after her much faster than I can catch him, and cornering her. This includes him slapping his own head on both sides when he's frustrated, usually because he's been asking me to eat all day long every day. When I say no, it's not time right now, or try to redirect, her starts smacking his head so hard that he has bruises on his cheeks.

Those bruises have never happened before, and it is unbearable to witness. This has nothing to do with me getting him to eat apples -- he does that voluntarily and it seems to have fit into his routine seamlessly. I demonstrated how good he is at eating apples (veggie booty reinforcers after each bite, but still) to Therapist R, who came for two hours this afternoon [Friday 11/28] to save my sleep-deprived butt after Leelo woke up at 4:14, and Supervisor E, who dropped by for an hour to meet with me and discuss how things are going with Leelo's home routine, eating, behavior, visual supports, etc.

I have to consider that even though Abilify has the potential to increase his appetite, he is also out of school and mostly just with me right now -- and as much as I am trying to keep him entertained and busy all day long, he is a difficult boy to keep busy and entertain all day long. There are gaps. And he doesn't like the gaps, so I think he immediately thinks to fill them with something he likes to do and is good at: eating.

Dr. R, his new psychiatrist, says it sounds like the Abilify is wearing off by morning, and we could put him on 5 mg 2x day -- but it makes him so groggy I don't think it would be good for him to be at school in that state. And we would like to see him have one completely routine week on the Abilify, a week without colds or holidays or birthday parties or sisters and dads going away for several days. Let's see how he does for at least one routine week and then start considering tweaking, adding in Claritin, etc.

Seems to be back on his game in terms of focusing. For the last two weeks he had a really hard time focusing and even getting his own underwear on independently. But he also had a cold. This week his cold is gone and he is getting himself fully dressed down to his socks, independently and frequently without any prompting other than me leaving the clothes out where he can find them.

His language is good, seems to be increasing. I don't think this is solely the Abilify as according to his daily record he started using this kind of language a few days before we started grinding up antipsychotics and putting them in the peanut butter of his dinner sandwich. He may just be going through a language spurt as he has in the past. But is very cute and he has been incredibly engaged and social. Examples:

  • "Want to go outside with Godfather M"
  • "Hi, Supervisor M!" (unprompted)
  • "Hi, Therapist R!" (unprompted)
  • "Want to kiss Elizabeff, want a kiss, Elizabeff"
  • (pointing at my friend Roo whose name he didn't yet know): "Jump with me" [on the trampoline],
  • "Want to go play outside"
  • "Bring the green straw"
  • "Want to play outside with Merlin" (who was over for Thanksgiving)
  • "Want to jump [on the trampoline] with Ki"
When Ki (beloved friend from Iron Gate Nursery School) came over, Leelo ran over to get the wiggle cars so they could ride them together. Was very social with her all night.

Nice to see some niceness amidst the grueling grind, but the lack of sleep is killing me. Doesn't seem to matter if I push his dosage time back, if it's at 5:30 or at 7:15. Goes to bed by 9 PM and is up around 5:30, sometimes as early as 4:15, sometimes gets up for a spell in the middle of the night. Regardless he seems to be sleeping for no longer than eight hours every night. With no school and zero to minimal respite and Seymour away for several days, having him sleep the same amount of hours as I'm supposed to is killing me. Especially since Jennyalice and I published Can I Sit With You? just two days ago, which means I've not had enough sleep for most of the week already due to my work day usually starting around 9:30 PM.

Not a whole lot going on to convince me that medicating Leelo was the right idea, but I'll give it another week.

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I'll Take Those Odds

Waiting at Coffee Bar in San Francisco (mmmmm!) for a Leelo team meeting with Seymour and Supervisors M and E to discuss how completely fucked up Leelo is right now, and how horrible our lives are and how depressed we all are!

Who wants to bet that I'll never get around to writing up what we talked about?

12.01.2008

Mike Adamick on Can I Sit With You?

This week's Can I Sit With You? Story is The Weirdest Kid in the World, by Mike Adamick of Cry It Out: Adventures of a Stay-at-Home Dad and StrollerDerby.

Mike's is one of the most painfully funny stories in the new Can I Sit With You Too? book -- a book which tops your holiday gifting list this year, yes? (Don't forget that lulu.com shipping costs go down down down when you purchase in bulk.)

Mike's participation in Can I Sit With You? is a particular treat for me, as his guide to the Westin St. Francis area was one of my favorite parts of BlogHer08 San Francisco. And I suspect I'm not alone.

Enjoy.

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11.29.2008

Happy Birthday Mali

Someone turned four on the 26th. Her dad said that her at-home party, at-school party, and birthday breakfast were topped off when an entire planeful of people sang her happy birthday. Which I'm sure she just hated. These poor third children, they can be so neglected.

Here is Mali the birthday girl on her for-real natal day, all dressed up to go visit Seymour's parents for Thanksgiving:

India on Her Fourth Birthday, Real Smile

So let me tell you about this girl, about what she's like right now. And as this will be an ooky and sentimental and everything-about-"mommy-blogging"-that-give-me-the-hives post, you should feel free to go elsewhere.

I am not sure where this entertaining little gremlin came from. I do know that she is part sweet and friendly Seymour, part my outgoing and charismatic mom, with a bit of my deviltry mixed in -- which is good because entirely well-mannered children make me yawn. I tell people that she is my bonus, and I mean that in the most positive way possible. She is an absolute delight.

She seems to have a spotlight on her everywhere she goes, and makes friends with everyone she meets -- whether they had intended to meet her or not. She is the Empress of our local grocery store, where half the staff knows and loves and comes over to talk with her.

Because of all the positive reactions she gets all day long, she sometimes thinks a bit too much of herself. When we visited the new Cal Academy, and the docent introducing a movie told us all to have a good time, Mali shouted out, "We will!" The entire audience cracked up, so she said it a few more times and didn't understand why everyone wasn't laughing with her again.

Occasionally, she can be a showstopper. Literally. When she visited the Sesame Street Lounge at BlogHer San Francisco back in July, she was excited to meet the real Grover and Abby Cadabby, and play and talk with them. Then Abby Cadabby asked Mali what her favorite song was, and our girl belted out "Somewhere Over the Rainbow" in its entirety. Her performance made Abby's puppeteer -- someone who should be impervious to kiddling cuteness -- cry. The attending Sesame Street staffers were agog as well, but then recovered and handed me business cards, saying, "We need to see her in New York!" I didn't get Mali's performance on video because I was too stunned and amused, and didn't even write about the staffers' reaction, because it was all so surreal. That was *my* kid? Who taught her how to do that? Where did she get all that confidence?

India Meets Abby Cadabby and Grover

She's been doing basic reading for a while. I came to pick her up early from school a couple of months ago, and she was sitting with one of her teachers reading a book full of phrases like "Bob sat on a mat." That same week Seymour and I were checking out his website, and Mali leaned over our shoulders and read, "Quest!" I can't trick her into watching what I want on TiVo because she will say, "No, Mommy, Kim Possible is RIGHT THERE." She had a lot of fun, pre-Election, reading peoples' yard signs as drove down the street, and loved say things like, "Yes on Prop 8! Hurray!" purely because she knew her statement would infuriate Iz.

She wants to do everything that big sister does, which is what little siblings this age do, or so I've heard. When Iz got a haircut and Mali didn't, Mali came home and started to give herself a haircut. Thankfully she only took off one front lock before I found her:

"I want a haircut, too!"

Unlike her practical and analytical sister, she actually plays and makes up stories and all that. She gives her stuffed animals names, interacts with them as though they are real, and makes them play out imaginary scenarios. I had only hearsay beforehand knowledge of this kind of play, as Iz and Leelo are creative in different ways. Iz's and Leelo's long-neglected stuffed animals and dolls must be thrilled to finally get off those shelves.

India and Her Pets Smile for the Camera

She figured out how to sing along in harmony. I didn't teach her to do that, and in fact have been trying to teach Iz to do so for years. She dances and rocks out whenever she hears a good beat. Unabashedly. One of these days I might even let her join some kind of music or dance or indeed any kind of class, like the ones Iz used to go to at her age.

She is sweet and squishy and empathetic. Even though Leelo still terrorizes her every chance he gets, she tries to offer him treats, tries to share her french fries, donuts, toys, or other things she knows he likes. I hope we can help Leelo control his behavior before she stops doing this altogether, before the "I don't LIKE my brother!" howls take over completely.

I spent several months being worried that she never really drew, that her peers were drawing trees and houses while she only scribbled big colorful jagged-edged clouds. To the point where I went in and talked with her pediatrician, who assured me that she wouldn't expect Mali to draw more than a circle (which she could do, if pressed). That same day, following the pediatrician's visit, Mali came home and drew a bunch of "Shylers" (i.e. dolls) with Seymour. Who laughed at me a lot. It's now a few weeks later, and she is drawing all the time. (I'll have to capture some of her flower or ghost creations and post them here.)

I am starting to realize that Mali is the kind of kid who doesn't do things like potty training or drawing before she's ready, but who -- once it's time -- is *really* ready.

Watching her development, watching how different it is from her siblings', makes me appreciate how some kids are closed oysters -- we parents have to be patient, and wait for them to reveal their gifts. Iz has a same-aged friend whose development had a few hiccups, but who now plays piano beautifully, is an amazing artist, and scores self-made stop-motion Lego animated movies. Watching that child's development, and seeing Mali develop faster than Iz in some ways but more slowly than her in others gives me perspective, and faith, that Leelo still has a lot he's waiting to share with us.

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11.27.2008

What I Am Thankful For Today

Leelo eating apples for the first time in five years:



Seymour and the girls are celebrating Thanksgiving at Seymour's parents' house, so it was just me and Leelo today. We had a lovely hike with Ep and Merlin mid-day, but then had several hours before our friends Godfather M, Roo & Spot, and Ep & family showed up for take-out Indian food Thanksgiving dinner.

I decided that break would be a good time to see if Leelo would try a new food, if I provided enough:

  • Incentive (he didn't get an afternoon snack until he tried a bite of apple)
  • Positive reinforcement (huge big production and praise when he did try a bite)
  • Role modeling (yum yum, look, this is such a delicious apple, I love it! I think you will like it too because it's crunchy like veggie chips!)
  • Isolation (no one but me to hit or act out on)
  • Patience (I had four hours to wait him out)
It took 2 1/2 hours. He wasn't pleased, but he also didn't throw nearly the kind of fit I was expecting. And then he started eating the apples voluntarily.

I am very, very proud of Leelo for finally taking that leap of faith, for trying a new food for the first time in years. And I told him so, frequently, for the rest of the day.

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11.26.2008

Can I Sit With You Too? Book Now Available!

Our second book, Can I Sit With You Too? is now officially for sale! Thank you so very much to everyone who helped make this book happen. Please help us spread the word.

http://www.lulu.com/content/4213814



Can I Sit With You Too? features an introduction by SJ Alexander of I, Asshole, cover art by Lea Hernandez, book design by Amy Freels, and includes the heartwrenching and hilarious stories of Mike Adamick, Pamela Merrit (AKA Shark-Fu), and Gwendomama, among others.

The book is $18 plus shipping and the download is $11 -- a bit more than the original collection, but this book contains a larger number of stories. And all proceeds go directly to SEPTAR, the Special Ed PTA of Redwood City, which provides support, education, and community to families of special needs children in and around Redwood City, California. (You may tell skeptics who think this project "only" supports a local PTA that they might as well say the Bridge School Benefit "only" supports a local school.)

Here is what Can I Sit With You Too? is all about, via the back cover blurb:
Can I Sit With You Too? is the second collection of stories from the Can I Sit With You? project (www.canisitwithyou.org). These new tales represent an even wider range of schoolyard experiences, including best friend disappointments, new kid fears, harsh discrimination, living with disabilities, and emerging sexuality. By sharing moments from kindergarten through high school, these stories once again remind us that we are not alone: chances are, if it happened to you, it happened to someone else, too.
If you would like to promote Can I Sit With You Too? on a website, please email me at ciswysubmissions@gmail.com and I will send you the code for this tidy little "Buy Now!" button:

Buy Can I Sit With You Too? Right Now!
Support independent publishing: buy this book on Lulu.

P.S. Please note that we still have not published all the stories in the book on the website; some are still queued up. But we will. And know that we always welcome new stories.

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11.25.2008

Axis of Smackdown

(Apologies to Seymour, this was too funny not to post)

Seymour: "Iz, why do you have a World War II poster on your bedroom wall?"

Iz: "I really *like* World War II history."

Seymour, skeptically, "Really? Okay, who were the Axis powers?" (He was expecting the pat answer of Italy, Germany, Japan)

Iz: "Well, initially it was Italy and Germany, but then they were joined by Japan, Romania, Bulgaria, and Hungary."

Seymour, abashed: "Ok, then."

11.24.2008

Too Sexy for Can I Sit With You Too?


Here is the final, absolutely gorgeous cover of Can I Sit With You Too? Our thanks, once more, to Amy Freels and Lea Hernandez for donating their time, talents, and skills to a very fine cause.

The interior of the book is almost, almost done. Jennyalice and I have a few final tweaks to instate today and tomorrow, but if everything goes as planned, come Wednesday you will be able to order your own copy and tell everyone else you know to buy one, too.

I am hyperventilating just a bit about sending this book out into the world. Not because of the hard work -- that is mostly its own reward (my tired husband may disagree) -- but because the essay I wrote for this collection is a very frank description of how completely obsessed with sex my fifth-grade friends and I were, even though we were dorky, sheltered children with few actual facts on hand. The essay was easy to write but difficult to post and is a story I had to force myself to share, because I think it is important information. Fifth graders need to know, will be relieved to know that no, they're not nasty perverts just because they talk about sex all of the time.

I am sick to my stomach just thinking about this story being read by my mother, or mother-in-law -- or third grade teacher, who recently sent me a nice letter saying how wonderful Can I Sit With You? is.

But I think I'm ready to let my own fifth-grader read it.

11.21.2008

Helping Peers Understand Our Kids' Social Challenges

The following is a transcription of Diane Levinthal's wonderful 11/20/2008 SEPTAR presentation. Diane has reviewed, edited, and approved these notes. If you would like a script for talking to peers about social challenges, or for more information on social groups and help with social challenges, please contact Diane directly at info@socialstrides.com.

This talk is geared specifically towards "typical" classmates of children with social challenges in grades three to six, but much of the information is helpful for child (and adult) peers of any age.

Diane Levinthal, MA CCC-SLP
Special needs parent and professional
Director of a Peninsula practice for social thinking and skills, Social Strides
www.socialstrides.com
info@socialstrides.com

HELPING PEERS UNDERSTAND SOCIAL CHALLENGES

Helping peers understand our children's social challenges is a topic close to all of our hearts, especially as inclusion and inclusive themes gain prominence in our schools.

Kids with learning disabilities often have a wide range of social challenges. Tonight, we are talking about the kids who interact the most with with typical peers, kids with pragmatic problems, diagnoses such as pervasive developmental disorder, Asperger's, Non-verbal learning disorder, etc. We need to know how to reach the kids who will be interacting with our kids, in typical/inclusive classrooms, for kids with or without aides, kids in special day classes with mainstreaming, or kids on facilitated playdates.

Schools usually give kids information about character traits in assemblies and possibly have an anti-bullying program--but generally when we're talking about the early grades, instruction is about accepting differences and using the Do Unto Others model. At this age, we tell kids to "accept people 's differences and we'll be okay."

Things get tougher in 4th grade, because kids are getting older, reaching the "tween" stage, wanting more social acceptance, and starting to worry about societal conventions, concerns about "popular" groups, etc. At the same time, these kids in upper elementary -- grades 3-6 -- are still really receptive to any information about anything social from adults, because they still believe that we know better than they do. These kids are interested in social relationships, anything social, and they usually have social concerns about themselves and successful social functioning, about where do they fit in?

When Diane goes into classrooms, kids want to hear about social challenges; she finds that they are good participators.

Sometimes kids get specific information about kids with challenges. If their classroom was to include a child who was hearing-disabled, they would get specific tips on how to interact with this child and what does their disability mean, e.g., you have to make sure the child can see your face when you're talking. Diane sees this kind of inclusiveness discussions all the time.

She has NOT seen people giving specific information to kids about kids who are neurodevelopmentally or socially challenged. There is not much out there in terms of a script for helping kids think about social challenges. There is tons FOR the kids with social challenges, but very little for their peers, especially for upper elementary and middle school, when these kids are starting to become very concerned about social issues. It is very important to get the following information out there. And then when there are resources available in the district, the resources can be used to train school staff.

Her hope is that by giving us this information, we will feel more comfortable going and giving talks to our kids' classes and peers.

Parents worry about confidentiality issues. But even with one or more kids in the room on the spectrum, you can give information without violating privacy. Do not use names, and you don't even have to say "Autism" etc. It is enough to use the term social challenges, because as we describe the phenomenon through example and role plays, the kids will understand that we are not speaking about momentary social awkwardness that we all experience from time to time.

(The following information is drawn from three sources: Michelle Garcia Winner, Carol Gray, and Diane's own experience.)

So: What do Regular Ed peers need to know, to interact successfully with included kids?

* Need to know what "being social" is and what social challenges are
* Need to know about high incidence of social challenges across settings, that they have a LOT of socially challenged peers
* Need to know how to interact with them instead of avoiding them
* Need to know what it's like for our kids to try to get thorough a a day with social challenges
* Need to know that they can go to adults for help with socially-challenged peers
* Need to know that our kids do not do strange and unexpected things on purpose
* Need to know that our kids can learn, if they have enough experience and practice
* Need to know that our kids have abilities as well as disabilities

We are doing this because we expect them to be part of the solution, and we want them to be empowered instead of confused.

There is only so much you can do in an hour or incidentally, but any effort is a start. If you decide to go into a class, you need to do three things:

1) Ask the teacher for one hour
2) Get okay from other parents of included kids
3) Ask teacher if she or he will follow up with written assignment on "What this meant to my life, and what I learned."

Afterwards ask for permission to read the essays. That way you can see if they missed anything, and if you need to go back and recover any information (and this can also help you to find children who would be a good peer for playdates).

(Feel free to contact Diane at Social Strides for a model script. She will email it to you: info@socialstrides.com.)

Diane then led an example of how to present this topic, in a 4th grade regular ed class.

"Today we're going to be talking about social skills and social thinking. I'm "Sandy's" mom. By the time you're an adult, you're going to have met a lot of people. You'll know that a lot of people are good and bad at lots of things.

“If you know something about people's challenges, it makes it easier to understand others and it will help you interact with kids who have differences. Today we are going to focus on something called social challenges.

"Let me tell you something about myself. I can sew really well. I can look at a piece of fabric, look at a chair, and without measuring or using a pattern make a cover that will fit that chair perfectly. Does that make me a genius? No. But I'm smart. What kind of smart is this? The smart name is visual-spatial processing.

"I also have a challenge. I'm really bad at driving directions. Can I fix this? I don't know. Does this make me a complete loser? No, because I'm smart at other things.
Do I still need to go to the mall and find my way? Yes, I do. Should people not get in the car with me because I'm bad with directions? No.

"What is helpful is if I have someone with me in the car to tell me where to go, and do it in a nice way that doesn't make me feel bad.

"Let me ask you kids, what is one thing that is an ability in your life right now that you feel good about? Tell me one challenge that you have.

**people raise hands and list various abilities and challenges**

"Now I know your challenges. But if you guys didn't tell me this stuff, I wouldn't know. It takes a while to get to know people, and know what they can and can't do!

"Kids can have many different challenges, like being sensitive to light, sensitive to sounds being too loud, sensitive to touch. One of the hardest things is challenges with social problems and social thinking.

"What is social? [always waits for some kind of answer]

"It's about sharing space well with others. Right now in history there are more people than ever who have social challenges. This huge increase started just a little bit before you were born and no one knows why. We just know that each and every person in this room is going to deal with dozens of people who have social challenges in their life. You will be around these people in your class, scout troop, family, neighborhood. Some have big social challenges, some have medium challenges, some have small challenges.

"Being good at social is knowing what the rules are, about who you are with, where you are and what is going on at the time. For most of you social skills are usually an ability rather than a challenge. You can tell the rules for social pretty easily and quickly.

"For instance, what are the rules for being in an elevator?

[audience]
"Let the other people get out first.
"Don't push the red button unless it's an emergency.

[Diane]
"Good job with those rules!

"What are the rules at home? Can you be noisy, interrupt each other, stand close to each other? Share feelings? Yes, but you can't do these things with strangers in an elevator!

"Can you sit in your mom's lap? Can you sit in the principal's lap? No? Why not? Did anyone tell you theses rules? Then how do you know them?

"We learn social rules by watching reactions and seeing how people react. 95% of how we interact is body language! It's true! This is something we learn to do when we are really little. For instance, when you were a toddler, if you tried to touch your mom's purse, you would see her giving you a look that meant, "no, don't touch that." You would observe your environment, and learn from your mom's expression

"A lot of learning social rules is that you need to attend to your environment and to people's body language, observe, and guess what you're supposed to do, and then act. This is called ‘social problem solving.’

"Most of us are born with a brain for social thinking, for being able to do social problem solving automatically. But some people aren't, and for them social thinking is really hard.

"Okay, so I'm going to go to the front of room. Now I'm stopping and looking at the floor. What are you students probably going to think about that? Would you think that there's something on the floor? You follow my gaze because I'm acting in an unexpected way so you want to find out what is going on. You might say 'what's on the floor?' If I said, 'It's a spider!' If it was an ugly, huge spider crawling on my floor, what would you do? Would you slide a piece of paper under the spider so you could get it outdoors?

"All of this can happen without speaking a word:

• You used your eyes to check out the environment
• You noticed that I was staring
• You followed my gaze
• You read my facial expression
• You assumed that I was afraid
• You saw that I stopped talking and looked at the floor, and
• You guessed that I couldn't continue class because I was afraid.
• You altered your behavior because of what you saw, and
• You guessed and got rid of the spider.

“By doing that you returned the class back to calmness, or returned us all to an "expected" flow of events. What you just did is a very complex process!

"Every person with a social brain is constantly reading their environment and making smart guesses, and adapting their behavior so that everyone feels comfortable.

"If people can't do this and keep making social mistakes, everyone is uncomfortable. What if the kid misread my thoughts and feelings and picked up the spider and handed it to me? I might think that that kid was goofy.

"Most people, kids and adults, don't understand social challenges. They think the kids are being weird on purpose.

"How do people react to socially awkward people?

1) They avoid them, feel sorry for them, OR
2) They get aggressive, tease, bully, set up, joke, get angry because they think the kids have no smarts or are doing it on purpose

"If you were a kid with social challenges and everyone was avoiding you and getting mad at you no matter what you did, and you didn't know why and you couldn't figure it out, how would you feel? Frustrated?

"Having social challenges is like being really bad at science. You know you're bad but you have to take the test anyhow, and the teacher is getting mad at you and what you're doing is wrong, but you don't know why and you have to take the science test anyhow.

"But science class is temporary. Social issues are all day long. If social skills don't come naturally, you have to deal with one of your biggest challenges all day long. A person can't NOT do social!

"I'm going to show you a video about kids who have social challenges, from their perspective. Remember that there are a lot of kids like these kids at your school, right now.

[Diane plays excellent fifteen minute video: Intricate Minds III from Coulter Video Educational DVDs (www.coultervideo.com). Diane hasn't been able to find anything else like Coulter Videos to help regular ed kids in this age group learn about social language and behavior challenges. And their videos address all age levels and all ranges on the spectrum.]

"Do you know anybody who reminds you of these kids? Don't name any names guys ~ just raise your hand if you do.

"If you do know someone who looks or acts like this, do you know for sure they have a neurobiological condition like autism or Asperger's? Not necessarily, because we all make social mistakes from time to time.

"Is it okay to ask kids if they have these conditions? NO, it is not. It is their business and their choice to tell people about their condition. If they do tell you, it is not okay to tell other people without asking permission, because otherwise you're taking away that person's choice of who they choose to tell.

"The best way to help peers with social challenges:

• Don't to give up on them
• Don't ignore them
• Make them listen to you sometimes!

"This will help them learn. It is always better to tell someone how to do something than tell them now NOT to do something. If too hard, ask for help -- teacher, aide, or their parents, or [speaker] to help get ideas about what might work for you.

"You guys know that the ways people react depends on who you are with, where you are and what's going on at the time.

"Here's an example of social rules changing because of where we are:

“If we are hanging out in my kitchen, do you need to raise your hand and wait to talk every time you want to say something? No, not in a private social conversation.

"People with social challenges have a problem understanding that there are these kinds of social shifts, that how you act depends on where you are and what's going on.

"Can you show me how a teacher can call on a student without using words or pointing? By looking directly at them! But not everyone is going to understand that message. If we were having a conversation and I turned my head to the side and put up my finger, what does that mean? It means wait a minute, I need to think. But what if the person I was with didn't understand my point? He or she would keep talking and then I would get irritated because they ignored my signal.

"How about verbal interactions with unclear words?

“If I keep following you around and talking about Pokemon, you might get irritated but if I don't look at your face then I wouldn't know.

“If you back away or say something sarcastic, I still might not get this because I don't understand that your voice and facial expression mean that your words aren't true.

“You might get so mad that you yell at me and I still might not understand your feelings. maybe when I do recognize your anger, it will come as a sudden surprise in what seems like out of no where but I still won't know why and then I won't be able to change my behavior in order to keep you feeling comfortable with me.

"Here's how you can help kids with social challenging behavior:

1) Say what's bugging you/label the behavior ("You're ignoring my gestures")
2) Say how it makes you feel ("When you ignore my gestures, I feel like you don't care about what I'm saying.")
3) Make suggestion/ask about what you want to happen instead-- kindly and without judgment -- don't be mean. ("Please give me a turn to talk, too.")

"I know it's hard for some of you not to just try to be polite and say nothing, and ignore the mistakes. But this really doesn't give the socially challenged person a chance to learn or correct what they are doing. It's better to say something in a neutral and helpful way.

“Also remember that you need to compliment people very often if you are going to give them constructive feedback. I know you all learned how to do this in second grade when they taught you about "oreo feedback." (Two nice statements for every constructive statement.)

“If you run into some confusing social situation you can always get advice from a teacher, an aide or me if you see me on campus. It's okay to talk about social and get help for yourself or to help with a peer with social or other challenges.

"Kids with social challenges need a lot more practice to learn how to adapt to new social scenarios!

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Abilify and Et Cetera

What I need to document right now is that we started Leelo on Abilify last night. I'll put down details later.

There was some debate between Seymour, Supervisor M, and myself about whether Leelo should resume Claritin (after a few months' hiatus) before or after starting Abilify. We decided to have him start Abilify first, even though his seasonal allergies appear to be emerging. His violence is what we need to handle, and we want him to have a several-days long stretch adjusting to the drug before Seymour and the girls take off for Thanksgiving.

Leelo had a hard time going to bed last night, was up from 2 to 3AM (which I didn't even know as Seymour took over and let me sleep, bless him), then woke up at 6:30 with a poop (there was some damage control), and then barfed up his breakfast. Barfing seemed to make him feel better, and nausea is one of the most common side effects of his new drug, so I watched him for an hour, decided that as he was no longer green and was acting like himself (e.g., roundhouse to the side of my head when I didn't spool up "reindeer" fast enough) he was fine, and sent him off to school. It's been 2 and 1/2 hours and I haven't heard anything yet. Crossing my fingers.

What I also need to document here is that I am slammed. And weary. CISWYII review books are gorgeous but have a few formatting issues that Jennyalice and I need to fix. And in looking them over in hard print, I feel as though I didn't do my best work as an editor (Jennyalice, of course, did everything she said she would do, and more. Slackard = me). The beauty of Lulu.com is that we can take another pass at the MS before releasing the books for sale next week.

So chewing on the MS is what I am doing. And publishing the notes from this week's two SEPTAR meetings, which were really wonderful, especially yesterday's presentation on Helping Peers Understand Your Socially Challeged Child. And cleaning up poop sheets and vomit floors. And trying to replace Therapist R (one of the reasons I didn't want to push it when she asked to leave early on Monday is that she wants to stop doing ABA with Leelo in general but agreed to stay on until I found a replacement). Oh, and getting ready for Mali's 4th birthday party tomorrow. Which means Leelo and I should probably finish opening his birthday presents when he gets home today (Check out how much he loves the floor puzzle from Susan, and how much better he is at it than his very silly mother).



Have a lovely weekend. If you want someone who does tired and overwhelmed and grumpy but still really damned funny, may I recommend SJ or Julie.

P.S. Thanks again to every single one of the wonderful people who offered advice on medications, both on and offline.

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11.19.2008

Thoughts on the New Can I Sit With You? Story: Cootie Girl, by Beatrice M. Hogg

This week's Can I Sit With You? story is Cootie Girl, by Beatrice M. Hogg. Beatrice tells it straight and true, lets us know how it felt to be the child who -- because she was different in many ways -- had the "cooties," bad. Few children would risk catching those cooties to be her friend, and those who did sit next to her were mostly trying to copy her test answers. Even so, the story ends on a cheeky and upbeat note.

Jennyalice and I hear, over and over, how deeply people are touched by Can I Sit With You? stories like Beatrice's, how their heart aches for those children of injustices past, how they wish they could go back in time and help, be those children's friends.

I agree, some of our stories are hard to read. But I would also say that it is even harder to take those feelings of love and righteous indignation and put them into action in your present life. Today I would ask you to walk that walk, to keep your heart open, and to make an extra effort to be tolerant and kind to the quirky kids who have grown up to be quirky adults.

---

Our next collection of stories, Can I Sit With You Too?, is almost ready for publication. You'll see balloons and hear fireworks in the next few days.

P.S. Our CISWY Jumping Monkeys interview for today has been cancelled, as Megan Morrone has gone on hiatus in order to spend more time with her family. Good luck, Megan!

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11.18.2008

Riding the Rosenberg Rollercoaster for One Week

**I am publishing this draft as-is, to record a truly overwhelming week that nevertheless was peppered with gifts of kindness from my wonderful friends.**

The benefit of weeks like the past one is that I rarely have a big reaction to anything anymore. "Hmmm, okay" is now about as far as I go.

Please note that Leelo had the sniffles and has been getting up at 5 - 5:30 during and since a few days before this week began.

Sunday
Leelo's birthday party. Fantastic. Yay! Thanks everyone.

Monday
Leelo in school, girls out. Went with Jennyalice to see Beverly Hills Chihuahua, Iz made me proud by recogizing the pug as Marc. Leelo came home and did some kick-butt puzzling.

Tuesday
Veterans' Day. Friends over. Made homemade carrot cake to have something to put under wonderful frosting from Leelo's birthday cupcakes. Had a good afternoon even on a day without Leelo help.

That night Seymour had the worst work crisis ever in his personal history of work crises. Wasn't his fault, but it was his responsibility. He spent the evening evaluating the extent of the crisis.

Wednesday
By early AM, Seymour had determined that it was a very bad work crisis indeed and that he not only couldn't come to the parent interview portion of the behavioral psychiatrist intake appointment re: Leelo's meds -- an appointment for which we had waited over two months -- but he had to be at work ASAP and couldn't wait with Leelo to meet the bus, either (initial plan: one of us was to go ahead to the appointment, the other was to wait with the bus; if the bus was on time, then the person who waited with Leelo wouldn't be late for the appointment). This was an anxiety crisis not unlike Mali's fractured collarbone, but with fewer options. Actually, with only one option. I called Ep and asked if she could wait with Leelo for the bus, and thank the gods of trench-based friendship, she said okay. ("He only hit me three times!" she chirpily declared, afterwards.) THANK YOU EP.

Thursday
I had had Leelo's in-person intake evaluation at PAMF wherein their top behavioral psychiatrist very kindly told me that Leelo's "very low functioning" and "extreme violence" merited putting him on the anti-psychotic drug Abilify;

Intake appointment only took five out of scheduled 60 minutes; for some reason the doctor thought he was going to have a discussion with Leelo. So we got to go have breakfast at the cafe, which was nice because I had to miss Bad Moms' Coffee.

After Leelo went to school, I ran over to the grocery store to buy cupcakes for Mali's birthday party at her school, which I had agreed to hellp host. The parents might not have been impressed by purchased fare, but the kids were and that's all that matters. Fairy was so great that I hired her for Mali's real birthday party (which is not on her real brithday; she will be on a plane with her dad and sister on her actual birthday).

Stumbled through the party and left early to have lunch with my dear Jen. I felt like I was coming down with something so I had veg pho. We hammered out CISWY stuff and surprised several members of the local Special Ed department (they are nice people, but I think that they get nervous whenever they see one or more of us parents together). Talked about ourselves and our friends and family. Why are all our lives so hard hard hard?

Picked up Iz and her friend Fifi from school. Took them to Jamba Juice (blech) as that was the very most important place in the world at that particular moment.

the very big interview that Jen and I were doing for Can I Sit With You (and which we'd cited on the book cover, which is ready to publish) was cancelled;

Therapist R called to say she didn't want to do ABA therapy with Leelo any more, but said she'd stay on until we found replacements.

Therapist Y called to cancel his afternoon session.

I still managed to make Seymour a homemade dinner with pan-fried pork tenderloin, roasted potatoes, and fresh applesauce, though his serving was cold because his work kept exploding and kept him late in the office.

and I was so sick with a sinus infection/cold that I ended up prostrate in bed wishing that someone would poke my eyeballs out with a stick and was in so much pain I didn't get to sleep until the fourth or fifth treatment worked at 1 AM.

Friday
Spent the whole day frantically packing Leelo for camp. Had to put his name on everything, everything, even his socks. Took fricking forever. Still very sick, but at least was under the "please, kill me now" sinus pain threshold.

Picked Mali up from school, picked Iz up from school, drove 20 miles north and picked Leelo up from school, then turned around and drove 40 miles south to deliver Leelo to camp. The camp intake was chaotic but fluid and before I knew it Leelo was in the hands of a cheerful perky teenage girl who was unfazed by my description of his needs and quirks. Leelo said "Bye, Mom," and never looked back.

Saturday
We had grand plans to go out and do family things with the girls, but we were honestly so exhausted from our week and I was still so sick that we all laid around watching videos, and then had dinner at a Vietnamese restaurant that Leelo would likely not tolerate. The girls seemed okay with our lazy lazy day. How nice to have a lazy lazy family day once every eight or so years.

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11.17.2008

Only Slightly Exaggerating

funny pictures
moar funny pictures

I don't normally dabble in lolcatz, much as I loooove the ICHC book and the peals of laughter that come from behind our closed bathroom door because of it. But I've had a super-crapper of a week (note continuing theme) and I am feeling a bit loopy and that makes me caption pictures of cats.

P.S. O plz vote for me!

P.P.S. Today? Today Leelo's stalwart, patient Therapist R and the usually unflappable Supervisor E (she of the specialization in behavioral management of violent behavior) both decided that Leelo's ongoing outbursts were not compatible with a successful home therapy session, so they left early (edit: and I don't blame them). Leaving me with a pissed-off Tasmanian devil Leelo in a house where both girls had friends over and dinner was only half-made. But it all worked out and no one got hurt. I think Leelo is angry about having to come home from camp and the resumptions of having demands placed on him. Who doesn't hate to come back from vacation?

P.P.P.S. You know your perspective on gratitude has become warped when you are impressed, so grateful, and happy that -- in the course of grabbing a fistful of mess and rubbing it on the wall of his room -- your son managed to not get one speck of mess on his pajamas or sheets. (That really is impressive, though, don't you think?)

P.P.P.P.S. I am tired of special needs catalogs that sell outdated or standard-issue equipment and materials and software for 500% over markup because it is therapeutic. Talk about exploiting a vulnerable community! We got Leelo a CD-ROM software program that I will call CrappityCrappity, to help him with his mouse skills. It was not cheap. And I kid you not, it is software I could have made myself in Macromedia Director, in 1996. Seymour took one look at it and calculated that it was programmed at the cost of one dollar per minute. My anger at being swindled is only slightly moderated by Leelo's honest delight in the program, which makes me think that I need only brush up my skillz, and I'll be an autism and special needs interactive mogul! At the very least I could set Leelo up with some cool customized programs.

P.P.P.P.P.S. It's not really Shia who is going to be replaced -- Medianoche is the rug-pisser -- but the latter cat does not pose for any lens.

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The Exceptional Babies of 2000

Leo spent a very happy weekend at camp. Good for him, good for his parents: Seymour and I were able to rest and partially recuperate from epic, miserable colds (our delighted girls did not complain about bonus video time).

While Leelo was off winning a certificate for "best bounce house performance," Seymour and I went to church as a couple for the first time in several years. There we witnessed the 3rd and 4th grade Catechism (a intentionally reclaimed term) class's Right of Passage ceremony, which celebrated those children's journey from childhood to youth. The children read self-composed personal credos, lit candles, and were warmly embraced by the entire congregation.

As the children filed onto the sanctuary's dais, I realized that many of them were baby and toddler peers of Leelo's, from the church nursery. That was an unexpected blow. But I am getting used to these woulda-coulda-shoulda land mines -- I cannot be waylaid by them if I wish to be a functional person -- so I shook off the emotional shrapnel and let myself be happy for the catechumens.

It was especially good to see kids of that age thriving, good to see them making spiritual and developmental strides, because in my experience that's not the case for most of their peers. In my personal circle, children born in the year 2000 have more developmental and situational challenges than any other children I've met. It's eerie.

I'm not only writing about the families we've met through Leelo; many people to whom I allude have been in our lives since before we became parents. And of course it's not all of the 2000 babies; many of them are just fine and in fact exceptional -- in a good way. But even so, I often find myself thinking about these children, and why it is that they have it so hard. I know it's silly. I know there's no correlation, no causation. But I will always hold a special place in my heart for the babies of 2000, and their families.

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11.11.2008

New Can I Sit With You? Story, Jumping Monkeys Interview, and Book!

This week's Can I Sit With You? Story is A Special Education by our own beloved Gwendomama. It's not the easiest read for those of us who have children with special needs, but it does starkly illustrate why we should badger our schools to promote inclusive attitudes from day one. Thanks, Gmama.

Gwendomama also left a comment asking how I could have forgotten to put eggs in birthday cake batter. Answer: My mind was altered, but not by alcohol. I'm running on about half the sleep I should be, because Jennyalice and I have been cranking on the manuscript for our second story collection, Can I Sit With You Too?, and finalized it the day before I made the eggless cake (which, may I emphasize for the fifteenth time, was a serendipitous delight). The CISWYII MS is now in the hands of three fantastic proofreaders. Amy F., our talented book designer, delivered the final cover last night (and I know you've already drooled over DivaLea's cover art). The book itself will be available to purchase on or around November 19.

Why November 19, you ask? Answer: That is the day Megan Morrone of Jumping Monkeys will interview me and Jennyalice about the Can I Sit With You? project. We'll be on at 4:00, so stay tuned, or download the podcast afterwards. (And our thanks to Susan for making the interview happen.)

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11.09.2008

Eight!

Eight!
Leelo being happier than happy during his bouncy house eighth birthday party earlier today.

The party was a huge success, with so many of our wonderful friends and their wonderful children. The cupcakes Ep and I made were wonderfully delicious even though we forgot to put the eggs in the batter. Leelo even at three bites of one! And I still have a pound of the mascarpone frosting in the fridge -- the best frosting I've ever tasted -- if anyone has an idea of what to do with it.

The two biggest joys of the party for me were 1) seeing so many children with sensory sensitivities having an unabashedly fantastic time in a completely safe environment, and 2) Leelo being so happy and in such a different aggression space than he was at DoubleTrouble's boys' birthday in June that I got to relax and let my son bounce without shadowing him the entire time.

We're so tired that we haven't even opened a single one of Leelo's presents, but who doesn't love it when birthdays get extended over more than one day?

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