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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11.08.2008

Zero to Eight

My sweet, loving Leelo is turning eight tomorrow. He has a snorfly nose right now, so I hope he feels better and has a longer-fused temper in the morning, as we have made arrangements for him and his friends to jump their brains out at a local bouncy house emporium (all we have to bring is cake and a lighter). That cake will actually be red velvet cupcakes with mascarpone icing, and if the kids think that they're gross, then all the more for us grownups. After the party and a break, we will take him out for naan bread for dinner. And I will give him the Chicka-Chicka Boom Boom DVD that I hunted down for him after those YouTube people with their "copyright violation" baggage took the video off the internet. And hopefully there will be more snuggling like there was today.

For those of you who haven't known Leelo since he hatched, here's a survey of our delightful boy on each of his birthdays for the past eight years:

Leo: Fresh and New
Zero

One-Year-Old Happy Walker Leo!
One (and so obviously showing early signs of autism *cha*)

Two-Year-Old Leo at the Long Beach Aquarium
Two

Three-Year-Old Leo Getting All Clean
Three

Four-Year-Old Leo During His Birthday Party
Four

Five-Year-Old Leo and His Dad During Uncle John & Auntie Mary's Wedding
Five

Six-Year-Old Leo Sneaking Into Grandma's Bed
Six

Seven-Year-Old Leo Loving the Monterey Bay Aquarium
Seven

Happy Birthday, Mr. Excitement!

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11.07.2008

Optimism Is Easier at the Federal Level

Election Day. I took Iz out of school early so she could come vote with me, because she wanted to be the one to push the voting buttons for Obama and against Prop 8.

She had a therapist appointment two towns away at 5 PST, and soccer practice from 6:30 to 7:30, so we spent a lot of time listening to the returns coming in on the radio, and trying to analyze what each state's results meant.

Seymour brought her home from practice, had a bite, and then he set Leelo up with a laptop DVD of Monsters, Inc. so the rest of us could watch the speeches in partial peace (Mali was with us, after all).

I was impressed by John McCain's speech, and thought that if that man had run the McCain campaign, they might have had a chance. Iz wanted to know why everyone kept booing every time Obama's name was mentioned or alluded to, and I told her that their behavior defined the difference between the two campaigns. McCain had unfortunately been a role model for petulance, and his followers weren't ready to give up their behavior patterns just yet. Mali kept jumping up and down on the couch, yelling "McCainMcCainMcCainMcCain!"

Obama's speech was delightful. He, and the crowd in Grant Park, made me feel that our country has changed for the better--almost tectonically. But I didn't cry until I saw Jesse Jackson crying; that floored me. Iz couldn't believe how cute Malia and Sasha Obama were, and that they were going to get a puppy just because they were moving into the White House. I screamed "YEAH!" when Obama asserted that ours is a country in which everyone is included, no matter our race, religion, sexual orientation, or *disability*. Mali kept jumping up and down on the couch, yelling "ObamaObamaObamaObama!"

We were all happy Americans on Election night.

And then, in the morning, we found out that Prop 8 had passed. I was dumbfounded, mostly because we live in San Mateo County where it was voted down by a very wide margin. And I can't believe that anyone would ever vote to take away rights, to legalize discrimination.

But I understand why it did pass. As I told Iz, people don't like change. And a lot of Christian people don't question what their churches tell them. That doesn't make them evil, it makes them ignorant. It means that they have confused the message of their church with the message of the man whose ideals they are supposed to hold supreme, Jesus -- a person who would never, ever have supported Prop 8. (Even Ann Landers would have agreed.)

But I remain hopeful, like so many others. As I told Iz, I have faith that when it comes to basic and to civil rights, our country will always do the right thing. Eventually. And by the time (and if) she's ready to wed, she and her peers will be able to marry whichever prince or princess has stolen their heart.

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11.05.2008

The Right Toy

Still processing yesterday's sweet victories and callous disappointments. Though I wish I'd taken a video of Mali jumping up and down on the couch yelling "OBAMAOBAMAOBAMA!" during that gentleman's first speech as President-Elect.

In the meantime, I'd like to show you an example of how wonderful it is to find the right toy for a kid like Leelo. The toy in question is a Tactile Pathway made by WePlay and sold by BeyondPlay, and was Seymour's mother's birthday gift for our almost-eight-year-old boy:



Sweet.

The background song "Pony Boy" is one of Leelo's favorite tunes. It is sung by Jaycob Van Auken and Stephanie Schneiderman, and is from the That Baby CD--which I partially panned in a MotherTalk review a few months ago. Come to think of it, all my reviews for MotherTalk were mixed, which may be why I haven't heard from them in a while. Hmm. Perhaps honesty is not the best approach when reviewing Blogosphere schwag, if it comes with promotional undertones.

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11.03.2008

New Can I Sit With You? Story: The Flip

New Can I Sit With You? story: The Flip, by Laura Eleanor Holloway. Cooties & bullies & comeuppance! http://www.canisitwithyou.org/?p=218

Laura also wrote one of my personal favorite CISWY stories, Dodging Bullet.

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11.02.2008

Worry

India the Turkish Pajama Girl

This is what Mali looks like when she's worried that Leelo is too close by. She looks like this too often. Even though it has been a long time since he has succeeded in making contact, and even though he now only needs to tap her to get an extreme reaction, she gets this look on her face any time her brother is near. And I can't bear it.

Those of you who know me IRL may fleetingly wonder why I've been either totally losing my shit at the least provocation lately, or acting like the world's grumpiest zombie. This is why. I can't bear this. I can't bear, can't contain in my heart or my head the knowledge that the son with whom I spend so much time snuggling and giggling and playing -- who asks me to read him his favorite books with great big smiles, who asks for kisses all day long and gives me spontaneous bear hugs -- is the reason my precious tiny girl spends so much time anxiously on guard or screaming in honest terror.

We keep them apart. We try to convince her to not react just because Leelo is in the same room. We don't give him any reaction other than physical redirection when he tries to hit or push her. We are working on other ways to help Leelo manage his aggression both in the short and long term, but it's not enough, not right now.

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11.01.2008

Note From Leelo's Team Meeting

Trying to get into the unofficial spirit of NaBloPoMo.

I had a meeting with Leo's teacher, primary para/aide, and Supervisors M and E on 10/29. Here is what we discussed, as passed through my somewhat grumpy filter:

Home News
We are using icons and visual schedules to help Leelo follow directions and make transitions for such things as: put on shoes, bathroom, wash hands, put on seat belt. They are helping with compliance.

Aggression at Home
Leelo tends to “target” his younger sister Mali about 20x daily, he doesn't get her at all if we can help it, but there are days when he gets her once or twice and then we have to isolate the two as much as we can in separate areas of the house; after an incident we focus on soothing Mali and do not give Leelo any reinforcement whatsoever.

His aggression occurs more often if he has been denied something, or been doing something for a while (boredom). Maybe latest upswing in aggression has to do with Therapist R going on vacation for two weeks, or the fact that Seymour and I have had eight trips between us in past six weeks, or the fact that allergy season has begun in earnest and we have not put Leelo back on Claritin after we stopped giving it to him in the early summer so his system could take a break.

We are taking Leelo for behavioral/aggression/meds/psychiatric evaluation in two weeks. It was recommended that we bring video clips that include incidents of aggression (though this will have to be under controlled circumstances), and repetitive behaviors.

OT at School
Leelo has an OT named Liesl who visits on Fridays for an hour, and who has come twice already. No one knows her last name, or where she comes from. I found out about her just one week ago.

Leelo's his previous OT just sort of didn't come back this year. She thought she'd notified me, Supervisor M, and his teacher, but she hadn't. So the district was out of compliance with Leelo's IEP for the entire first month of school before we discovered this lapse. I kept calling the district and getting no results, so I spent a lot of time on the phone with various occupational therapists (most of whom had wait lists) to see if we could get Leelo some private OT and then charge it to the district. Finally, one very awesome woman -- M. of Firefly OT -- called me back and said that she had two therapists who would be willing to do push-in OT onsite at Leelo's school. I called to let the teacher know and she then told me about Liesl.

There are some communication issues with the district, evidently, as they are the ones who recruited and placed Liesl without notifying anyone officially. Overall this is good news, but I am irritated about busy people duplicating effort.

Leelo's class staff will try to get more information, including contact information, for Liesl.

IEP Goals
School staff hard work with 1:1 correspondence is coming along. I notice this particularly at home because Leelo is starting to tell me that he has two ears but just one nose, whereas previously he always had two noses.

Leelo is starting to be able to use past tense (with picture prompts) to talk about what he did that day, e.g., "I ate," "I played" etc.

Copying letters continues to be challenging for Leelo. His teacher uses the Handwriting Without Tears program. His progress has degraded a bit (I have noticed that his written "Leelo"s are not nearly what they were last year) in the absence of an OT so his teacher will see if Liesl can help with this.

Food tolerance.
His school staff have been working with Leelo daily to introduce two food items -- orange pieces and hard-boiled egg white pieces -- to his diet, using a therapeutic and consistent food tolerance sequence. (I do food tolerance work with him at home using less-preferred foods.) Supervisor M and the class staff consider the program somewhat “stalled” as it is difficult to get Leelo to open his mouth and put the food in (he will touch it, pick it up, kiss it, and rub it on his lips, but nothing further). He is better with the eggs when they're dipped in salt, it was noted.

So, we're all going to take a two-week holiday from food program and resume before Thanksgiving. We will not let him have any of the veggie chips he loves so much during this time and save them as reinforcers for the reinstated program, to provide extra motivation. When food program resumes we will do ONLY 15 trials per session.

I am going to send the girls and Seymour off to his parents' house for Thanksgiving and put Leelo in food tolerance boot camp. It'll be just me and my boy for four days: no therapists, no school, no small children to injure when he gets frustrated after offerings of novel and less-preferred foodstuffs. Our current schedule and home environment never allows for those long windows necessary to become hungry enough to be motivated to try something new. He needs more fresh food in his diet, and some protein besides peanut butter and the eggs in his pancakes.

Typing.
Leelo is doing well with typing on the computer even though there have been some computer set-up changes since last year. We all need to begin working again with Leelo on word processing, starting with his name (we will ask for OT assistance). He should continue learning to play five new games. Conveniently, I used to work for a children's software publisher, and still have CD-ROM software that will work with the ancient computers at his school. I will send in several.

School Problem Behaviors:
Aggression.
Supervisor M showed us some graphs illustrating that Leelo's aggression incidents are actually fewer now than in spring and summer, about three per hour (this includes aggression towards himself as well as towards others). What she admitted that her graphs didn't illustrate was the occasional Intensity of his outbusts, and how dangerous they can be. The staff should complete incident reports when either Leelo, staff, or another child is injured, and should contact me that day. This discussion was quite effective as Leelo got written up the very next day for pushing another student; I discussed the incident with the teacher and told her that unfortunately in my opinion the safest thing to do is to try to keep Leelo more isolated when he is more agitated. There are a number of continuous screamers in his room; when he's in a good space he can tolerate them and keep working (which is amazing to see) but if he's easily distracted then the screamers make him crazy.

In general, we will all try to be more aware of Leelo's high risk times: For starters, everyone should be on their guard for:
  • Boredom
  • Attention turned away from Leelo, attention to others, general lack of attention
  • Many people suddenly arriving
  • Screaming
  • Less-preferred direction / demand
  • Removal/denial of something he wants (especially straw, certain foods)
  • Many consecutive demands without any reinforcement (e.g., during work time)
Keeping Shoes on.
Leelo consistently takes shoes off on the bus, and most often has them off during school; he is more likely to take them off when the weather is warm. Leelo needs to put his shoes on when he comes off the bus; in general, he should have them on during school EXCEPT when in the motor or sensory rooms, or grooving on the sand between his toes during outdoor recess.

Health.
Leelo needs to keep his hands clean and wash them after recess: Leelo currently washes hands upon arrival (after bathroom), before snack, before lunch (after bathroom); while washing, he still needs to wet his hands more thoroughly, and rub them under running water for longer. Staff will help him do additional handwashing in AM, and PM, and will work with Leo to be do a more thorough job.

Transition to Third Grade:
Talked about his placement options for next year. I am fairly bummed that he can't stay in his lovely little wonderful cocoon of a class with his wonderful teacher and fantastic supportive staff. Supervisor M and I will have to start to look around at other classrooms. And there aren't many of them for a boy like ours. There's a third grade class at his school, but so far I've not heard much about it. There are satellite classrooms on a regular campus one town over, which is where two of my friends' kids go, but the campus is totally unfenced. And I was reminded that an "open" campus with a 1:1 dedicated aide may in fact be more restrictive for Leelo than a segregated site like his current school and its rotating staff model, experientially.

Time to start with the site visits.

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