Happy New Year!
My showboat resolution for 2008 is to not host six sizeable parties in the six weeks between Thanksgiving and the New Year, directly after start-to-finish publishing a book in nine weeks, and right before a trip to Cambodia. (On the self-education side, I've found that if you come into an urgent clinic where the posted wait is three hours and tell them that you have chest pains and shortness of breath, they will see you immediately! Ideally you will then be like me and experiencing stress rather than a cardiac emergency, and will only have to sit through a brief doctor-lecture on reducing anxiety through medication and lifestyle modification.)
My serious resolution is stop molding my opinion in deference to stronger personalities, and what I think they think I should be thinking. Which also means toning down the grandstanding-blogging like the paragraph above.
The resolution I can't commit to is to stop using adrenaline as an antidepressant. Instead of overloading myself and my schedule, I should be spending more time taking care of me, my family, and my relationships.
Happy Happy to You.
Mali, at Home and at the MIND Institute
(From 12/17. Still going through the post fragment pile.)
Our Mali is a hoot. Definitely a little sister: the things that come out of her mouth, her facial expressions, and her gestures are frequently those of, say, another girl who is about to turn nine. This morning when Leelo, Iz, and I woke her up when we arrived back from early-morning errands. She stood at the top of the stairs and yelled, "Good morning, guys!" When I told her that I had a bagel for her, she said (in her very best Iz-speak), "Wow, that's cool!"
The fact that she thinks hitting people is funny and totally okay is more evocative of a little boy who recently turned seven.
She has definitely become a real person, a conversational person, an opinionated and forthright person. She can hold her own with Iz in an argument, through sheer force of will. I didn't ever think I'd feel sorry for Iz in any sort of intra-familial debate, but Mali just may kick her ass. Yesterday Mali and I were sitting on the couch watching The Princess Bride with Iz, when the girls got into an argument over who loved their Mommy more (be still, my heart). Since Mali is newly three, the argument devolved into whose mommy I was was. "My Mommy!" "No, MY Mommy!" Eventually Mali leaned over me, stuck her nose up to Iz's, and growled, "NOT YOURS!"
She is still sleeping with us because "I just don't want to sleep by myself!"
Mali is also a sweet, empathetic girl who spontaneously pats us, telling us how much she loves us and how beautiful we are. She bounces up to everyone, including strangers, with a big smile and a (leg) hug. If we are standing on a street corner waiting to cross the street, she will wave at people in cars (and they will usually smile and wave back).
Her MIND Institute evaluation on 12/3 was actually ... fun. She was at or above age level on every factor. And it was reassuring to see the positive reactions she elicited from the behavioral pediatrician who evaluated her: Mali helped put away most of the toys and puzzles, and said please, thank you, and other social pleasantries without being prompted, to the point where the evaluator looked at me, flabbergasted, and asked how I got our girl to behave so nicely. My flip answer was "Montessori preschool" but really, it's mostly Mali being Mali and having superpowers of observation and interpersonal perception. When the evaluator did an emotional mirroring test, looking inside a box and pretending to be scared of what was in the box, Mali leaned over and asked, "Are you okay?" The evaluator was shocked, and said no child had ever asked her that before.
She is one of the best things in my life right now.
Not a Good Time to Be Leelo's Little Sister
When Mali woke up this morning, I asked her what she wanted to do today. Her reply:
"I want some breaktest [sic] and I want Leelo to not hit me."He is targeting her every chance he gets. I tried to get groceries accompanied by Leelo and Mali last night, and am not going to be able to do that again until he changes his ways -- it is almost impossible to hold Leelo at arm's length, steer a shopping cart, and put groceries into it. If she's in a chair, he tries to push her. If she's in my arms, he tries to hit her. If she's on the ground, he tries to kick her. I think it's because he loves the big reaction from her. And he doesn't like having his routine changed. And school doesn't start for nine more days.
I think this is even more stressful than when Leelo used to randomly shove random people. I cannot even imagine how much this is fucking with Mali's mind and outlook.
Technorati Tags: autism, autism blog, autistic
Can I Say To You?
Originally from 12/2. Going through all the unpublished fragments in the Ecto pile.
Can I just say how pleased I am by how much Iz loves our book? When she tells me how things are going for her at school, about various social indignities and complications, in almost every case I have been able to remind her of what happened in such-and-such Can I Sit With You? story. She finds it very comforting. Mission accomplished! I am going to go sleep now.
Ho Ho Ha Ha
Tally for Xmas dinner at our place tomorrow: 22 or 23. All helpful, fun, pleasant people though.
Iz, who still believes in Santa, is being a major pain in the ass. It is tempting, says Seymour, to place a lump of coal in the advent box whose tiny drawers I have been faithfully stocking for the past 24 days. She tried to call me a hypocrite today but it came out "hippogriff" instead. So if you hear her or Seymour call me "Buckbeak," now you know why. (My hypocrisy, btw, was in telling her not to say negative things about her wonderful self and her wonderful art, etc., efforts.)
House full of relatives means Leelo is all pissed off at the world and has had two pee accidents even though before today he hadn't had one in over a month. He is also pissed off at his little sister and is gunning for her every chance he gets. Now Leelo is riding in the minivan's way back instead of its middle row of seats. Even more isolating. But better than having a little sister whose first reaction to him is "He's going to hit me!" Bright spot: When he is amped and aggro, focused time with Mommy or Daddy calms him down, and he asks for lots of kisses and squishes in a very sweet way. Plus he is using a lot of good language: "Want to see the sun up in the sky!" and such. Haven't updated his home record in over a week. Bad mommy. I have arranged a lot of extra professional one-on-one Leelo time during the next two weeks, but I'm worried that it won't be enough.
Mali is learning a lot from both her siblings: arguing for arguing's sake from Iz, and having no qualms about decking those near you when you're upset from Leelo. Good thing she's still charming. She woke up this morning, saw the arm chair that had replaced her toddler bed in our room (her cousin Kylie is sleeping in the toddler bed in her parents' room/our guest room during their visit) and yelled, "MOMMY! My bed turned into a chair!" Then she declared, "I want to snuggle with you in our bed," and put her nose up to mine. She must have gotten a blast of my morning breath, though, because she then declared, "Mommy, I think you have gas."
I personally have hit the wall. Usually I can rally, but after a very busy year of working very hard (by my standards), I have realized that I am not getting it together for our holiday newsletter and the few non-email cards that I have sent each year without fail. But that's okay. I'd rather try to get it all done by Jan. 1, and thereby allow what by my standards constitutes some rest, so I can not only be up to but enjoy my mom, little brother, parents-in-law, oldest brother and family, brother-in-law and family, cousin D and family, and everyone else we'll be spending so much time with during the next seven days. Seriously.
Happy Ho Ho Ho.
Technorati Tags: autism, autism blog, autistic
Leelo's IEP and Transition Plan
The IEP went well this AM.
Leelo will be getting a new classroom teacher in the new year, she is very experienced, and is coming from one of the Santa Clara county classrooms that is being shut down. She will start on Jan. 7th.
If all goes well with the new teacher, Leo will transition to full-time schooling, and I won't have to pick him up three days per week, beginning Feb. 16th.
Technorati Tags: autism, autism blog, autistic, special education
Who Doesn't Want to Help Cambodian Children?
The thought of me asking people to open their digital wallets for a good cause is shocking, I know. However in this case it's actually my daughter who's on bended knee.
If you're looking for a good cause or gift donation for the holidays, please consider helping Iz raise money to donate towards two fine Cambodian children's organizations: the Nutrition Center of Phnom Penh (an orphanage for disabled children), and the Cambodian Youth Network for Change (YNC). She will be taking your largesse to Cambodia and donating it in person, next month.
TinyURL version of Iz's DropCash campaign page: http://tinyurl.com/2j8bdo
If we're fortunate enough to hit our ceiling, it is very much okay to donate more. DropCash will record it and PayPal will take it.
If you donate $35 or more, and if you include your mailing address during your PayPal checkout, Iz will hand-write you a thank you note.
You have our gratitude, everlastingly.
(Many thanks to Beth Kanter for hooking us up with Chak Sopheap of the YNC.)
New Story on Can I Sit With You?
This time the author's story is not quite as gripping as the time he fell ninety feet into a glacial crevasse, but it's still touching.
And in case we didn't make this clear: we are heading towards volume two of Can I Sit With You?, so send us your damn stories.
Technorati Tags: Can I Sit With You
Eeeepity Eep Eep Eeeeeep!
Amazon, we has them. Or they has us. Or something. Is there a Lolcatz-speak antidote? I needz it.
Anyhow, Can I Sit With You? is available through Amazon.com! Only problem: we set our price low so that people would buy lots and lots of books, but if we only have dribbly sales at Amazon then we actually lose money on each sale. We can't raise the price without changing our ISBN#. Though we would start making cash if Amazon thought it was worth their while to buy, say, 100 copies from us. Hint hint hint.
Minutes: Leelo Team meeting Dec. 12, 2007 (Therapist L, Squid, Supervisor M)
Most important news- also in body of minutes:
Therapist L informed us that her final day with Leelo will be Feb. 15. She is looking to work closer to home, further develop her skills with a greater variety of students, possibly in a school or non-public school setting. [Cue Squid sobbing]
Leelo did independent work during the team meeting; he did 4 tasks for about 10 minutes, all independently; this is a first for him, and shows how hard he has worked and far he has come with this; he was more independent than some other 7 year olds when their parents are talking!! FANTASTIC.
Hardly any potty accidents, but still some pooing in pull-ups when in bed (hard to tell if he’s pooing at night, in sleep, or in the morning after he wakes); Leelo gets out of pyjamas when zipped up the front; consider wearing underpants at night- maybe start after the holidays; compulsive flushing still a problem; Therapist L tries “first pee, then flush”, and blocks flusher with her body
Leelo able to buckle his seatbelt now- HOORAY. [Only when sitting on right side of the car; left-hand seats and their buckles are still not acceptable.]
Re-introduced some foods he had not been eating lately- bagels, tortilla chips, potato chips; this is so important, and good progress in such a short time.
Aggression increased past few days- more frequent and intense both at home and at school; Squid wondering if sugar intake, or allergies; Supervisor M- could be seasonal cycle; hit stranger in coffee shop- goes to that place regularly; pummeling Iz when Squid told him he could not go outside;
Triggers: in lines, crowds, lots of talking, when someone tells him no/denied what he wants, when kids are crying/screaming, waiting, vacuum,
Setting events/ situations that increase likelihood of hitting that day: Sugar intake, forget allergy meds, sleep changes, illness,
All staff working with Leelo now (at least 5 different staff); this week he has been with Sylvie.
Next week- Lynda with Leelo; this is her first time working directly with Leelo;
Behaviors increased in intensity last few days- change in schedules- special holiday activities.
Newest tasks- folding, starting with shorts; Therapist L hiding toys inside shorts to help Leelo to understand the purpose of the task;
Edmark- Leelo almost finished with matching section of program, next will come beginning reading; ACTION: label things around the house to create word-rich environment
Chaining actions during songs- Leelo very interested in this, doing well; Leelo taught Squid a song Babysitter K used to sing with him (colors of rainbow); he also taught Therapist L different versions; starting hand- clap games, including downtown baby, Ms. Mary Mack, ACTION: let Therapist L know if Iz/Mali or friends are doing other hand-clap games.
Tapping to get attention- Leelo tapped Mali to get puzzle piece from her; also self- correcting- he begins to hit, and then stops and taps instead; continue working on calling name while tapping
Patterns- colors, shapes, letters; ACTION: next step, apply patterning to beading activity, gluing stripes in a pattern, gluing letters in pattern, point out patterns in real world; begin more complex patterns (e.g. abc, aab, abb, etc).
Functions of objects- mastered 6 cup, bed, book, scissors, chair, toothbrush, crayon; Next steps: soap- washing, plate- eating, piano- playing music, ball- throwing; after Leo has mastered about 10 objects, do senses (eyes- seeing, ears- hearing, fingers- touching, tongue- tasting, nose- smelling); use physical examples, books- eyes are for seeing; Dr. Seuss- eye book, ear book, etc.
Cutting- ACTION: move to full square; continue with stiff paper/cardstock;
Math- Check Montessori web site; match written to number of circles at bottom of page:
Scheduling changes, holidays, etc.:
Family in town from 22nd to 1st, mostly Squid's mom;
First day back to school Jan 7th;
Squid out of town from 12 to 20, traveling to Cambodia with Iz
Therapist L off Dec. 24, 25, Jan 2, 3, and 8.
Supervisor M off between Dec. 19 and Jan 3
Therapist L- planning to end her work with Leelo on Feb. 15; exploring work options with Spectrum or Inside Out;
T-Shirt Power, Activate! Also, Autism and Independent Work
I had Leelo wear this new t-shirt today:
And it worked! He had a wonderful, sweet, happy, interactive, calm, aggression-free, spontaneous-pottying morning. Oh yes, I believe in truth in advertisting.
Here is what he looked like on top:
(We are doing his favorite I-sing-you-repeat song cycle, all about looking at eyebrows, wanting to watch the Teletubbies, and wanting to go on the computer. I have to get a video of him singing this with his sisters joining in.)
Forgot to add amidst the grumping yesterday: Leelo is doing so well at school that Supervisor M is not as freaked out as she could have been about Therapist L leaving our home therapy program. Leelo is actually learning at school; school is doing what school is supposed to do, and his home program -- while important -- is no longer his only legitimate educational and skills-sharpening environment.
Yesterday Supervisor M showed me a remarkable video of Leelo at school, doing a two-minute-long routine of entering his classroom, taking off his jacket and backpack, putting them on the correct hooks, taking out his lunch box, putting it on the correct shelf, taking out the notebook the teachers and I use to communicate, putting it in the notebook bin, checking his picture schedule, and then going to the potty. His para/aide gave him a couple of prompts but they were actually not necessary as he was already en route.
Our boy, he is a capable, smart guy. He just needs guidelines and predictable structure. This includes play. This is a heavy component of his home program. Supervisor M and Therapist L have done an amazing job of training him to have structured "Leelo time," where he has activities (puzzles, cars, bead lacing, electric toy keyboard) on different trays and a picture schedule of the activities, and he spends up to fifteen independent minutes checking the schedule and working through the activities at his own pace. Should get a video of this too. It's a great skill set for autistic kids, and a portable one.
Here are some generalizations and specifics about Leelo's independent at-home work, taken from last week's training session with Therapist A and Therapist R (formerly Babysitter A and Rosie the aide), and posted with Supervisor M's permission:
Strategies for working at home:
Goals: give him functional life skills, independent skills.
Very important not to talk with child while doing an independent chore.
Putting his clothes away in the correct drawers. Good for kids w/autism b/c is matching and categorization, very visual task; doesn't require language.
Initially started w/sorting clothes.
If you give him a large pile, might become overstimulated, so reduce size of pile; put it in a laundry basked so he can pull it out.
Good task: have him sort and match his own socks.
Next step: roll, if too hard from a fine motor perspective, just fold in half over each other otherwise.
He enjoys this task.
Setting the table
Supervisor M shows video of Leelo setting the table at school. He sets all the places, for all seven children because the other children aren't able to do it yet.
He takes the placemats from the pile, and puts them in the proper places at each table. Then he gets a reinforcer (straw in this case).
Currently his aide stands nearby but does not engage him. Eventually she will move away and look busy during Leelo's tasks.
Has to be an activity that he can do all by himself.
Using a TEACHH system. Important to have "portable" system so that child can generalize the skills and not rely on specific place and setting.
Leelo can currently do independent work for fifteen minutes. Even some open-ended activities (teletubbies to play with, play-doh--rolling and patting, cutting "pancakes") whereas used to be only closed-ended activities (puzzles, stringing beads). Therapist stays nearby and watches for off-task activities.
At home, should keep a TEACHH list on the wall of activities that he might want to do.
Sometimes I wonder if these strategies couldn't be applied to Iz as well, as she never seems to know what to do with herself unless prompted. (Ep: Shut it.)
Technorati Tags: autism, autism blog, autistic, independence, play, playful, singing
Buy Sum Pritty Stuff
I should be sending in an application for CISWY to start running ads, sending out a copy of the CISWY book for a potential book event in Marin, writing up a synopsis of CISWY for inclusion in Iz's school newsletter, writing to the woman in charge of the Phnom Penh orphanage to ask what sort of equipment or toys her severely disabled children might need, asking Jennyalice about CISWY book readings logistics, and making tiny iPhoto books for my various nieces and nephews as stocking stuffers. I am absolutely ignoring the kitchen that I dirtied making homemade spaghetti sauce and meatballs for dinner. I am still thinking about how to record Mali's evaluation at the MIND Institute, how to not cry every time Leelo hits me because a reaction is what he wants and he will even script for me: "OW!", how to be more accommodating to Iz in realizing that she really does need more social time than the average bear, and what I will wear tomorrow to the BlogHer holiday fete. I am forgetting lots of other things. Whatever.
What I am actually doing is sighing and asking if anyone wants to buy some pretty silver jewelry:
Go to the photo set for details. I need this shit gone!
Just a little bit.
I can't really remember everything that I have to do. It's too much and happening too quickly for a to-do list. And last night I fell asleep while reading Iz The Golden Compass, at 8:30 PM (she put a blanket over me, unprompted, and Seymour let me sleep, so double awwww), so I am even more behind with the Xmas letters and gifting, and organizing for my and Seymour's families to come celebrate/stay with us, and the Can I Sit With You? arrangements and promotions, and the organizing for Iz's birthday party, and trying to do a fundraiser/donation for a Phnom Pehn orphanage so that Iz and I can visit friends in Cambodia without feeling like assholes.
Anyhow. I'll get it all done. What is really concerning me right now is that Therapist L, who has been working with Leelo for 4 1/2 years, gave notice today. She's leaving Feb. 15th. I don't blame her; she's got a better opportunity that doesn't involve a bridge commute. Still.
I may just go hyperventilate for real.
Technorati Tags: autism, autism blog, autistic
Can I Sit With You? News
Can I Sit With You? News
(Copied and pasted from the Can I Sit With You? site as I am wonky-tired.)
Can I Sit With You? is on a tear. At this moment we're the #813 seller on lulu.com (we started out at #22,000), we've sold almost 250 copies, and we've cleared almost $1300 in direct donations to SEPTAR. Thanks so much, everyone, and please tell even more people to buy our book!
In other, also very exciting news:
Beth Kanter featured Can I Sit With You? as one of her charitable holiday giving recommendations for the BlogHer holiday gifting guide. Thank you, Beth!
We have also been featured at Blooking Central, a blog all about [blogs+books=] blooks. There may even be a follow up Q&A on how we made CISWY happen, so stay tuned.
Our local library is very excited about Can I Sit With You? and wants to set up an author's event, since our book features so many local writers. Again, we'll post updates as we receive them.
Locals who would prefer to get their hands on a hard copy of CISWY right now can do so at Main Street Coffee Roasting Company or Canyon Coffee. Both places feature fantastic, roasted-on-site coffee.
And, finally, we will be hanging with our Blogosphere buds at the BlogHer Holiday Meetup on Thursday in San Francisco. If you ever wanted to see just how tall and striking Jennyalice is, or how short and fuchsia-haired Squid is, then come on by. Just don't forget to RSVP.
Seymour prodded me awake this morning, reminding me that it was my morning to get up with Leelo. Our early waking boy was already audibly stomping down the stairs by the time I scrambled out of bed; by the time I opened our door and spotted him, he was all the way into the kitchen, singing Ram Sam Sam at the top of his lungs. With hand movements! The whole song!
He was also buck naked.
I escorted him back to his room, where I discovered a completely poo-full pullup sitting on his floor, on top of his pajamas. But Leelo did not smell, and there were no smears or puddles on himself, his bed, his sheets, the floor, or his pajamas. Not even his bottom was befouled. All the actual solids were completely contained within the pullup, and bundled up tidily.
I took him into the bathroom to dispose of the stinky package and give him a scrub anyhow; he ran to the potty ahead of me, and emptied what appeared to be a full bladder.
So, somehow Leelo manaaged to extricate himself from a poopy pullup without getting himself or anything dirty except the pullup itself, while holding an overnight bladder for a full fifteen very active minutes after waking up.
This is a boy who is increasingly comfortable, skilled, and in touch with his body. Go Leelo go.
In other news, this afternoon I am having a party to sell off the five hundred or so pieces of Tuareg jewelry my Malian friend somehow thought I should peddle for him. At least it's an excellent excuse to invite all my friends over and feed them and get them drunk while playing Holiday Hostess.
I really don't know what I'm going to do with any leftover jewelry; I checked out prices on eBay and such, and Tuareg jewelry is undervalued, plus the effort of selling such trinkets on eBay is not worth my time. Sigh. At least I know what all my female friends and relatives are getting for Xmas.
Technorati Tags: autism, autism blog, autistic
Hey Look Guyz!
Itz me an Jennyalice at Milagros!
moar funny pictures
An Godfathr Michael too:
moar funny pictures
Who by the way is making a special trip to visit us tomorrow, to help us trim our tree and thereby make his newly minted Xmas decorations junkie goddaughter a happy girl.
Milestones, Ineptitude, and Social Anxiety
I have a one-hour break to get some critical to-do items done, so of course I am blogging instead.
Last night Seymour and I got to have a date! A short one, but, still. When we got home, the kids were all asleep (never a guarantee even at 10 PM), so we even got to watch Battlestar Galactica: Razor together -- until I fell asleep on the couch, anyhow. ROMANTIC.
One of the things we chatted about was our different approach to projects and life in general. I am very much a plodding to-do list person -- while I do get hopped up on My Great New Ideas, I also prefer coming up with concrete, finite, deadline-driven tasks and getting them done; he is the dreamy, productive, open-ended integrator who innovates, and thereby impresses all his co-workers with his creativity. This is why he has a stack of laurels sitting on the desk at his high-profile job, whereas I wipe our kids' asses. Sometimes I wish I was more like him.
Especially now that Can I Sit With You? has been published (but it now, please!). I am flailing a bit as to next steps for promoting and increasing sales. Jennyalice and I had coffee with the Bad Moms yesterday, and as all those amazing women threw wonderful ideas at our heads, I could see the ever-sharp Jennyalice soaking it all up while I just sat there feeling dazed and queasy. This is why I stopped being a software producer and became a writer/editor/content developer.
Anyone want to help out with PR? I'm not saying we aren't capable, but promotions are not one of my strengths, and though Jennyalice could sell oil to Hugo Chavez, her life is about five times more nuts than mine. And I'm not exactly feeling sorry for us as we've raised over $1000 in less than a week, thanks to all our wonderful supporters. But I also know we could do even better.
And I am trying, really. I've slapped this button everywhere I could think of:
I took several deep breaths and nominated us when Beth Kanter put out a call for social and charity projects that make excellent holiday gifts and causes.
I am going to the BlogHer Holiday Meetup in San Francisco. Not necessarily to promote CISWY; more to help work on the social anxiety that had me flipping out through the entire BlogHer '06 Conference. And also to see many of my cool friends.
Also I've arranged for some local coffee shops to sell our book, and have given copies to local school librarians to review, get back to me with their opinion, and put in circulation if deemed appropriate.
We will also be having Can I Sit With You? authors reading in San Francisco in late January. More details as it approaches.
Anyhow. It's still not enough, given this project's potential. We could use some help, or at least some promotional ideas.
I know that not everyone wants to buy a copy of CISWY, and that's okay. But if you're still on the lookout for charitable holiday gifting ideas and vectors, please consider supporting SEPTAR, the Special Ed PTA to which all of CISWY's proceeds go, through the following means:
If you use this search box right here to find and then buy Amazon goods, SEPTAR will get a percentage of your spent dollars:
Of course, if you'd prefer, you can always make a tax-deductible direct donation to SEPTAR, in someone's honor.
And finally, one of my favorite CISWY writers sent us another story that will rearrange your insides, in a good way.
Time to work.
Technorati Tags: BlogHer, Can I Sit With You, Can I Sit With You?, special education fundraising, special education PTA
I think I may be simultaneously the best auntie and the worst sister-in-law around: I just bought my seven-year-old niece a Bedazzler for Xmas. I blame the "As Seen on TV" section at Long's. Her mom should be grateful that I didn't choose the Ginsu knives!
Meanwhile, we are waiting for Leelo's school bus. It is at least fifteen minutes -- usually twenty-five minutes -- late each day. Supervisor M told me that Leelo's class staff have almost never had him arrive less than fifteen minutes late, and that sometimes he's thirty minutes late. For a kid who only spends three hours in the classroom on three of his school days, this is not acceptable. Will have to call the bus people and make a fuss. I hate making fusses.
Technorati Tags: autism, autism blog, autistic, bedazzler, school bus, special education
Forgive My Braggings, You Will
Our third child is becoming a real person. With a conversational person's ability to skirt issues. After watching her thwack Shia the cat, I gave her The Look. She said, "Don't worry, Mommy! I would never do that to Shia. I am petting her gently. See?"
Mali has started to preface many of her statements with "actually." As in "Actually, I'll take the blue plate," or "Actually, I want my pizza to be cold." SHE ARE GIFTED! (Fourth bullet point from end of list.) I think I'll start getting her pre-tested for the local gifted kids' private K-8! (Just in case you don't know me, I am very much kidding. We intend to take advantage of our excellent local public schools, for the third time.) However I fully expect the MIND Institute folks to tell me that she is the cutest and most brilliant child they've yet encountered, when she goes to her 36 month Infant Siblings study evaluation tomorrow.
SMRT or not, she is very fun to talk to and play with. Especially when she gets surreal ("My jammies are turning orange!"), affectionate (throwing her arms around my neck for no reason and murmuring, "I love you, Mommy"), defiant ("I am not naked! I have a pullup on!"), creative (her many and varied spontaneous modern dance demonstrations), or just absurd (lying upside down against the couch back, pounding her feet alternately on the wall, yelling "Left foot right foot left foot right foot!").
Her sister is more existential; recently Iz and Violet spent the entire ride back from school discussing whether or not they actually existed, whether what they were experiencing as their day progressed was real. I told them they were too young to have existential crises, but immediately revised the statement: "Sorry, telling you that you're 'too young' is patronizing. What I meant was that I was surprised."
And then there's Leelo. He is doing the most amazing singing routines these days, and wants to engage us in all of them. I will try to video one of his song cycles. I always worry that he doesn't seem to be able to sing more than one or two line of a song he didn't make up, but then yesterday he taught me, line by line, the entire "rainbow" song that Babysitter K used to sing to him. Clever boy.
He had a lovely day today. Here are the excerpts from his home record spreadsheet. He is really fun to be around. I am so very proud of him.
HEALTHOther than that, please tell everyone to get a copy of Can I Sit With You? book. This really is the critical week for us. We are having a lot of success but could some more, so please do tell all your friends and family to buy the book!
Seems healthy. A bit of Las Vegas eczema still lingering.
Up at 6:30, to bed at 9:30
Overeating, all day long still issue. Cod liver oil, croissant, PB&J, veggie booty, banana. Stole some M&M's, refused goldfish. Is starting to try some new foods (corn chips, bagel).
Lots of singing "cycles" in which he is telling a story, or describing things on his mind. "Look at the teletubbies, look at the eyebrows, want to go on the computer" or "It's Mali. It's your sister Mali. Grandma & Grandpa, Grandma & Grandpa" Good asking for things he wants. "Want to go to Suraj. Want to go get some Naan bread." Also excellent identification of almost everything in his vicinity -- even in responding obscure, unprecedented questions like "What is on the ketchup label?" A: "Tomatoes!" Lots of demanding our attention verbally: "Put down the phone, Daddy!" Just a lot of language in general.
Lovely behavior. Couple of hitting incidents. Abundant independent play (going outside to ride on tricycle, etc.), sustained calm interaction with family. Giving lots of spontaneous hugs; also giving big smiles and hugs in reaction to praise, e.g., "You are so good at going to the potty!" Calm and social (for him) in general. Able to buckle himself into his car seat (and won't look at the buckle/clasp while doing so; doubly amazing) but cannot be adjacent to sisters in car; we have been having a lot of incidents of reaching over to hit them. Showing some task persistence with motivation: figure out how to work our rather tricky step stool in order to get at the veggie booty and straws cabinet.
No accidents. Followed body's cues to run for the potty, even when he woke up in the morning -- he stripped and went to the potty, *then* came to wake me up. His pullup was dry. Only downsides are compulsive flushing is still present and he is not remembering to wipe himself. But he is no longer compulsively hitting himself and the door as part of his routine.
Leo got new teacher on Monday 11/26 (third one this year as the class is still without a permanent teacher). However the paras are all so talented that I'm not too worried. He is learning so much at that school.
Autism, ADHD, Medication, and Bedside Manner
This is a revised version of a letter I wrote to a parent who is considering a specific doctor to consult on medications to help her child's problem behaviors.
We had (in hindsight) a negative experience with Dr. X. While he is extremely knowledgeable, genial, and responsive, he did not give us the evaluation we had asked for. We came in for a meds/ADHD evaluation; he gave us an autism evaluation (which we already had from Stanford/GGRC/UC Davis), told us our son was probably mentally retarded, told us that if we didn't potty train him by the time he was six it was unlikely to happen, and that, despite my son's obvious hyperactivity, he didn't recommend medicating him. I spent a long time feeling hopeless after seeing Dr. X.
Thankfully my son's amazing, wonderful home therapy program supervisor had practical rather than clinical experience and helped me regain my optimism -- now my newly seven-year-old son is almost fully potty trained (we flew to Las Vegas and back for Thanksgiving; not one accident during the entire week, even on the plane, even at night), and is learning to read via the Edmark system with a ferocity that is surprising even his veteran therapists.
The one thing I would laud Dr. X for is his caution regarding medications. He recommended that we explore every possible other cause of my son's hyperactivity before medicating him. We thought we had done that and eventually ended up going to see pediatric neurologist Dr. Y. She did think our son might have ADHD, and helped us explore a variety of medications: Adderall, Adderall XR, Focalin, Focalin XR. Each time he tried a new medication, we would have a two- to three-week honeymoon period of wonderful behavior, then he would plunge into a prolonged dark awful period of intense aggression. Our home life was horrible.
Then I talked with his regular pediatrician, Dr. Z. She said that children who present with ADHD symptoms often have undiagnosed seasonal allergies that make them miserable and lead to behaviors that mimic ADHD. We started my son on a daily dose of Claritin, and he has been a completely different child ever since.
What worked for my son won't necessarily work for every child, but I always feel that by sharing our experiences we special needs parents can help each other avoid reinventing the wheel.
Technorati Tags: autism, autistic, medication, ADHD
Letter Promoting the Can I Sit With You? Book
If you'd like to tell your friends and family to BUY BUY BUY about the Can I Sit With You? book, feel free to use the following letter:
Looking for that perfect holiday gift, the one that will both please its recipient and make its giver feel good?
Can I Sit With You? is a book co-edited by special needs parents Shannon Des Roches Rosa and Jennifer Byde Myers. It is a collection of stories about schoolyard social experiences, both good and bad. All proceeds from the sale of Can I Sit With You? go directly to SEPTAR, the fledgling Special Education PTA of Redwood City (www.septar.org).
These beautifully written, heartfelt tales should speak to anyone who has ever struggled to fit in with the other kids at school, wondered about feeling different, or felt like no one could possibly understand what they're going through. We hope they will inspire elementary and middle school students, or at the very least temper their bewilderment as they grapple with issues such as popularity, making friends, puberty, sexual orientation, religion, race, special needs siblings, and bullying.
The stories are told from the point of view of the former students, in their own words. We did not censor the profanities a former eight-year-old screamed at the boys who beat up her special needs brother. There is no preaching or patronizing. As one reviewer wrote, "Perhaps the most important lesson in all of [the stories] is that the writers all survived and grew up to have something to say, and a place to say it."
We think Can I Sit With You? is a wonderful book. And we would be so grateful for your support. You can purchase the book and have it shipped to you or your friends directly at:
Shannon and Jennifer
P.S. Can I Sit With You? is also an ongoing blog project. You can discuss any of the stories in the book, read new stories, and submit your own stories at www.CanISitWithYou.org / firstname.lastname@example.org.
Jennyalice and I can hardly believe it, but Can I Sit With You? is a real live book!
We would be grateful if you would order (and tell your friends to order) copies for everyone on your holiday shopping list. The direct URL for purchase is:
Our experience has been that lulu.com prints and ships fairly quickly. Here is their information on holiday ordering deadlines:
We will start doing official promoting (press releases, website relaunch) on Thursday 11/29. We are also starting to plan Bay Area book readings and book release parties, so keep watching this space for more information (and watch the Can I Sit With You? blog for more stories).
I would really like to thank everyone who reads this blog for inspiring me to think that this project could be possible in the first place. You are the ones who got Leelo and his friends the ramp for the Deadwood City School District OT room. You are the ones who rallied behind my friend Amy and sent her on the Sojourn Project. Without my experience and faith that The Blogosphere Would Provide, I would never have dared to ask someone as formidable as Jennyalice to take on such a potentially foolhardy project with me.
Miss Mali Jane Rosenberg Turns Three!
To think that, four years ago, I was blithely yelling "NOT IN THIS LIFETIME" at anyone who asked if we were having more kids.
I am so grateful that we won the Surprise Baby lottery. Mali is the cutest, funniest, sweetest child I know.
Mali this morning, right after thanking me for wishing her Happy Birthday.
Mali last night, on her last day being two, thinking about tomorrow being the day people would sing her Happy Birthday.
Mali at Leelo's birthday party three weeks ago, happy just to be around people who are about to sing Happy Birthday to her brother.
I think we'll keep her.
(All done maudlin.)
Using an hour of free time not to holiday shop or to do good deeds or to spend time with my kids or even drink coffee or get some exercise. No. I am spending my free time declining the two-foot stack of catalogs that piled up during the CISWY crunch period, via catalogchoice.org. Takes time, but ultimately saves everyone time and money and resources.
Re: resources, did you see the sea of roofs in yesterday's Las Vegas photo? Guess how many of those roofs had solar panels on them? Exactly ONE. Sheesh. This disappoints me not just because of the wasted and needlessly rerouted energy, but FUCK, people, where else could so much energy be so free? A/C, it cost money money money. Solar would pay for itself yesterday. Durrrrrrrr.
BTW, Seymour wrote a nifty short entry for Can I Sit With You? Anyone who has ever wondered why they were supposed to like the same music as everyone else will identify. (I still can't understand why anyone listened to Nu Shooz.)
And I loved the Immigrant Kids entry from two days ago, as it treats Can I Sit With You? quite literally.
I Already Blew NaBloPoMo, but Whatever
Vegas, it is not so bad. If you're staying in a house with a dramatic view of Red Rock Canyon on one side and a sparkly view of The Strip on the other, and this is as close as you ever get to said Strip (in background; very nice to look at from afar, at night). If I wanted to lose five hours of my life to traffic, parking, and crowds, I can do that right here during baseball season or at Fisherman's Wharf.
Cool house, though. Leelo loved his grandparents' pool.
Thankful: Fantastic Book Review for CISWY
I am thankful for many things and people today, but the thing that brought me out of an extreme grouch slump after Leelo got up at 4:30 AM and we spent the earliest hours of the morning cruising and gawking at The Strip was a wonderful, thoughtful, and I swear to God unsolicited review of Can I Sit With You? on lulu.com:
...For any adult who wants to be allied with a child (and even normal kids get the blues), this kind of book may be just the thing to open up discussion of what's happening to that child. It may comfort just because of its honesty and its assurance that other children have felt and survived these things, or it could be used to foster problem-solving to help a child cope with the pitfalls and hazards of even the most normal school experience. It could also help kids who don't have problems (or who are the problems) to see the situation from the point of view of those who are struggling, and open up the way for conversations about compassion and the different experiences of other people.Entire review here.
Happy Thanksgiving, all.
Technorati Tags: Can I Sit With You?
We've published the Can I Sit With You? book.
Woo, whew, and whoop-dee-doo all at once.
However, the incredibly talented Jennyalice (and I) are new at this whole "publishing our own book" thing, and need a week to review a hard copy before unleashing our triumph upon the world and forcing everyone we've ever met to buy one as a holiday gift.
If you just can't wait and would like to buy a review copy, please do! We're fairly certain that it looks the way we think it does. But we'll be absolutely certain in a few days.
In the mean time, I'm off to Vegas in couple of hours. Seymour is itching to check out the mountain bike trails in Red Rock Canyon. Mali is much better, so all three kids are itching to hop in their grandparents' new pool. I am itching to sleep, but will instead settle for accepting every single glass of wine offered to me by my generous in-laws.
If you haven't already, go tell Jennyalice congratulations.
Bulleted List Version
One CD has been in our car's six-disc changer since the van first joined our family four years ago: Leelo's Fourth Birthday Mix. Never once in three years has our boy tired of hearing his favorite songs from The Nightmare Before Christmas, Laurie Berkner, etc.
Tonight, however, for the first time I've ever witnessed, he did all the movements to "Nod Your Head" and "Ram Sam Sam." In the recorded songs' tempos, not at the slightly slower Mommy-sung clip. Impressive!
Funny thing is, he can't sing the songs and do the movements. Even when he sings with me, he is watching my mouth so intensely to ensure that I sing the right words that it is hard for him to focus on the movements. But when the pressure is off, he flies. SMRT boy. Now if we could get him to keep up the running for the potty when he needs to go, and stop with the shitting his pants to get Mommy's attention, we'd really be set.
In other news:
Iz and Mali are off school this week.
Mali has a really horrible respiratory infection. My "Hmmm, this cough sounds really bad" was greeted by the pediatrician with a "Yes, DUH," an in-office breathing treatment, Prednisone, and more Albuterol for her inhaler. If she has another bad night, she and I might not join the rest of our crew on tomorrow's Thanksgiving flight to Las Vegas.
Even when sick, Mali is hilarious. She woke up about every twenty minutes last night (clever Seymour opted to sleep in the guest room downstairs so as to avoid all the girl-children who had colonized our bed) to make elaborate requests with absolutely crisp diction: "Mommy, could you please go downstairs and get me some cold water from the refrigerator?" "I would like to put my hand right here on your neck, please."
Iz's language precision continues to amuse as well: "Converse high tops aren't made in the United States anymore? I guess everything is outsourced to China, these days." "Mommy, I mean which Webkins smelly stick would you choose if you absolutely had to! It's a *theoretical* question!"
I dyed my hair fuchsia on Saturday. Forgot to buy more orange dye, had fuchsia on hand. But unlike the orange, the fuchsia doesn't glow under black lights. No more after-hours go go dancing dollars for me.
It is really funny that Jennyalice and I think we have time to work on projects when our lives are already so fucking crazy that they drive us to drink distraction almost daily. But, somehow, we succeed. Even though I could go on editing indefinitely. (I am burying those statements here because I will crow when the succeeding becomes formally tangible.)
It is amazing to hang out with someone like Jenijen and witness how people can be even busier than me and yet find time for life-balancing activities such as exercise and creative endeavors. Plus her family is amazing. You, go away. They are our friends. OURS! Plus our partners geek out so well together.
It is so wonderfully sweet of Seymour to have pulled down kid- and kitchen duty for the last gnarly stretch of Can I Sit With You fine tuning and eating up every last second of my free time. Especially since he did so proactively and without one single complaint.
I tired. Good night.
Can I Sit With You? on DeviantART
I'd like to congratulate Lea Hernandez: her Can I Sit With You? cover art has been named one of today's Daily Deviations at deviantART.com!
Aren't you inspired? Please check out our Mission Statement and send us a story and buy our book when it comes out!
My current personal feelings are bouncing between how I felt when I almost dropped my Intro to Copyediting extension class because of life overload, but instead stayed up all night cramming and got an A on the final and in the class, and the gut-kick feeling of being the primary producer on a software product that shipped with a significant error despite my and my assistants' whipping the software testers until foam dripped from their mouths.
Of course, at the time I did not have children who kept me and Seymour up until 5 AM with their feverish coughing. Poor Mali.
Glad I am not in this alone. Thank you, Seymour, Jennyalice, Lea H., Minnie, Jabberwocky, and you wonderful, fabulous proofreaders.
Bow Wow Wow
Mali has been a dog for about a week. She will only answer to the name "Charles" (her grandmother's dog's name), insists on shaking paws and eating dog biscuits (granola bars), and barks a lot. "I'm not a girl, I'm a Dog!"
Seymour and I are amazed. We'd heard about kids doing this sort of pretend play, but have never experienced it firsthand. It's pretty cool.
Get ready for grumpy!
I've been sideswiped by a bad cold. Of the "someone is trying to explode my sinuses, I need two wee corks for my nostrils, and the only way to get warm is to boil myself in the bathtub" variety. It wouldn't be so bad if I could curl up in my bed and die, but parents don't get to do that. Sigh.
As long as I'm grouching: apparently I will always approach music as though I am fifteen years old, because my first reaction to watching Grey's Anatomy was, "Is that Psapp? That theme song? But *I* found Psapp on my own! I have to tell everyone that I liked them before I saw this very silly 'It's a medical drama! For chicks*!' TV show." And I am still putting them on our holiday mix CD, so there.
*I have only seen some early episodes, so I don't know if the opening sequence has since been changed -- but I think its juxtaposition of chick lit and hospital imagery is the stupidest fucking thing I have ever seen.
Big Man on Campus
The nicest part of my day was walking Leelo to his classroom (after dropping off my Auntie at JP's house, Iz at her school, Mali at her school, and my mom at the airport) and having every person in the halls stop and say, "Hey, Leelo!" and engage with him, whether they worked in his classroom or not.
A positive attitude in a Special Ed environment, it is almost magical.
I love Leelo's school.
Technorati Tags: autism, autism blog, autistic, special education
Did Someone Flip a Switch When He Turned Seven?
Some of the things Leelo did today:
- Asked to go to the potty. Repeatedly. Even while on the trampoline! No accidents all day, not even spilled water (a frequent cause of clothing changes at school).
- Invited me to sing songs with him. Asked me to sing songs with him. Many different songs. Many times today. Some songs he hadn't asked for in months, such as "My Darling Clementine" (which he calls "In a Cabin in a Canyon!").
- One of the main songs was Ram-Sam-Sam. He tried to do the movements! Many of them are a very big deal for a boy with his motor issues, and sometimes he just couldn't get it, but a couple of times when he focused really intensely, he could do the two-fisted barrel roll with his arms! He certainly did a lot more (successful) clapping than I've ever seen him do.
- Demonstrated a really beautiful understanding of rhythm. He started tapping out a beat on the counter. I started singing an improv song to the beat (some variation on the usual theme of "I love Leelo, yes I do, he's yummy and he's clever and he's squishy too"). He sped up his beat to double-time, right along with the song. Then he switched back to each beat. Then he did every other beat. He kept perfect time throughout.
- Went back to the (clean) trash can to retrieve discarded straws after being told that no, he couldn't have a new one since the one he just threw away was only five minutes old. Without a tantrum.
- Demonstrated really really great beginning sight reading with his Edmark program. He does this not just at home, but at school, because he is in a wonderful school in which they understand and accommodate him so well that he not only loves going there but is actually learning.
Technorati Tags: autism, autism blog, autistic
Back in the Real World
During those five wonderful days in our isolated cottage on a windswept, Cypress-covered mesa overlooking a bay, I never once thought about much of my time is allocated to really gross laundry.
I Can Has ISBN#?
At this very moment I feel like that should be the name of our project. Making a book, it is hard f***ing work, people!
Also check out:
We needs prufeadrz.
We needs moar short storeez.
Seeking: Kickass-Level Proofreading Warriors
Contact me at ciswysubmissions at gmail dot com or leave a comment here if you'd to like to both proofread a 100 page+ manuscript (boomerang cycle: out Tuesday AM, back by Thursday PM) and get a very heartfelt thank you on the dedications page of the Can I Sit With You? book.
Can I Sit With You: Can You Believe Our Cover Art?
The explosively talented Lea Hernandez just finished the cover art for Can I Sit With You?. I was so overwhelmed by the color, beauty, and details that I almost cried. Those shoes, people. Those are hand-crafted clay shoes. Please spend a long time poring over the picture and drinking in all the detail work, and being amazed once more by all the volcanic talents who have donated their work to Can I Sit With You?.
By the way, Can I Sit With You? is participating in NaBloPoMo. In between stories and announcements, we'll post your one- or two-paragraph descriptions of the silliest thing you ever did to get someone to be your friend. I posted yesterday; see if you can top my absurdity!
Technorati Tags: Can I Sit With You, Lea Hernandez
Happy 7th Birthday Leelo!
Your mommy loves you so very, very much, you smart wonderful creative joyful clever exuberant huggable straw-loving boy.
As Long As You All Hate Me Anyhow
The place Iz and I will be going to in January: Cambodia. To stay with friends. Who will also be our tour guides.
I don't want Iz to think such a poverty-stricken country is just about ancient temples and beach resorts, so our friends (who work on poverty issues for the World Bank) have suggested that she do a picture book* and used clothing drive at her school, and bring the donations to an orphanage herself.
Any other ideas?
*Literacy is far from universal.
Good Morning, y'all. *yawn* *stretch*
I just got out of bed. It's noon. I am alone.
Before you throw your computer across the room or try to Facebook*-gift me with a can of whoop ass, consider this excerpt from an email written to a friend last night:
Apologies again for all the delays in setting up Mali's and Zeke's joint birthday party. In the last week I had a Halloween party at my house, held Leelo's birthday party, held a birthday dinner party for another friend, took the kids to the Monterey Bay Aquarium, took Iz and Mali to the Zoo, had a two-part emergency root canal, cleaned the entire house (including 20 loads of laundry) to get ready for my mom and her sister to stay with us, stayed up until 2 AM last night writing out instructions for them to take care of our kids, and have been working very hard on a blog/book project that we're going to publish next week: www.canisitwithyou.org. Also Leelo was home sick much of that time and his afternoon therapist was out for the week. *Whew*So I am enjoying my uninterrupted view of Tomales Bay while being a big lazy lump.
This is the point where I normally make excuses and start rationalizing my good fortune, but don't you think that every single one of us would jump at such an break, were we afforded it?
What I think my SNK parents friends and I really need to do (those of us who don't have semi-local grandparents who will watch our kids) is start up a Weekend Getaway co-op. We set aside as many weekends of the year as we have members. Each member parent couple gets to go away for one of those weekends. The rest of us will watch their kids, in shifts.
*Today's CISWY story is a wry meditation titled Fake Friends on Facebook.
That God Damn Dog
You know what I enjoy more than going into a book shop and discovering that they are featuring my favorite novel of all time, The Curious Incident of the Dog in the Night-Time? Telling the clerk that many autism families really dislike said book because it manifests many of our worst fears -- and having said clerk argue with me using the book's literary merits: "But it's such a great story! So well-written!"
Yeah. Maybe. But I asked her if she would tell a cancer patient to read a novel in which the cancer-striken protagonist neither survives nor comes to terms with her new life, but instead dies in several short but painful stages. She continued to describe the book's many wonderful literary features and devices. At which point I said, "Really, what I need you to understand is that people should not recommend this book to families affected by autism." She finally said, "Oh, okay."
Nice start to my vacation. Nicer even than the emergency root canal I had this morning, and which delayed my departure by several hours.
FYI, by "vacation" I mean that I am hiding out, alone, in Point Reyes, while my wonderful mother and her wonderful sister watch my wonderful children. My wonderful husband will join me in two days, and then we'll have our first joint vacation away from the kiddlings since 2002 (since before this blog even existed).
I am looking forward to lots of hiking, lots of uninterrupted finalizing of the CISWY book, and to downloading the premiere episode of Grey's Anatomy so I can see what the hell Ep is always nattering on about.
Technorati Tags: autism, autism awareness, autism blog, autistic
I put Mali in my bed last night at 9 PM. She asked me for some water, then she asked me for a kiss. Then she put her head on the pillow and I didn't hear another peep from her until this morning.
THIS KIND OF TURNKEY BEDTIME HAS NEVER BEFORE HAPPENED EVER IN HER LIFE. NOT EVER NOT ONCE. Usually our girl simply will not consider go to bed until 11 PM, and even then either kicks and screams for an hour if we don't sleep with her, or kicks us in the kidneys for an hour if we do.
Granted, it was really 10 PM since California is a Daylight Saving state, she hadn't taken one of her infrequent naps, and I didn't even try to put her in her own bed. But it is progress. I am really looking forward to a time when Seymour and I aren't up at 6 AM with Leelo and then still up at 11 PM with Mali.
Technorati Tags: Mali, sleep training
Leelo vs. the Monterey Bay Aquarium
There are few places Leelo loves as much as the Monterey Bay Aquarium. We don't go that often for three reasons: we live 90 minutes away, I refuse to go any time it might be crowded (i.e., all Summer long), and Leelo's schedule rarely has a hole big enough for a major excursion. But we go when we can, because it makes my son so damn happy. (Oh, and my daughters, too. Hi, girls!)
I knew that the trip was going to be a challenge, even with brave Jo Spanglemonkey at my side. Leelo is well on the way to being potty trained, but he is still not entirely reliable. It is really difficult for him to focus on bladder control in an environment with multiple distractions (not surprisingly, he is most successful at keeping dry while riding in the contained, simplified environment of our car). He has never been to the Aquarium in underwear rather than pullups without a dedicated Leelo point-person shadowing him. He has never been to the Aquarium the day after a thoroughly successful sneak campaign to pillage large amounts of his sisters' Halloween candy.
Still, he did well on the drive down. We stopped in Gilroy for potty and coffee, and he stayed dry. We parked in Monterey, at the parking lot four blocks distant from our destination, and he stayed dry. At block three, though, he started grabbing at his crotch. I asked him if he needed to go, and he looked at me with pinched desperation. I looked around and realized, with escalating panic, that there were no potty options for entire stretch between Leelo and the Aquarium entrance -- only ticky-tacky tchotchke shops and roped-off construction areas. I had Mali in the stroller and my companion Jo Spanglemonkey was on the three big girls (her Sophie, my Iz, and Iz's friend Emma), so I left Jo in the dust, grabbed Leelo's hand and Mali's stroller, and bolted for the gate.
We almost made it. As I slammed a stack of membership passes on the counter, asked if I could run for the bathroom, and was given a warm, polite "of course," Leelo started peeing all over the floor. Sigh. Not his fault.
Nor do I think it was his fault when he had another accident 30 minutes later. He was in his happiest, most exciting place on earth, the wave tunnel!
I have a hard time controlling my bladder in the wave tunnel. It's just too exhilarating. And I am not a potty-training child who has a hard time focusing on bladder control in overstimulating environments.
However, this second accident meant that his backup shorts and underwear were wet, and that he had to wear a pullup under damp shorts. Our boy was not pleased. Vocally. Loudly. Thankfully, the aquarium was not that crowded, nor do yowling children attract much attention there.
While Jo and the girls checked out the main otter tank, I ducked into a gift shop to get the girls matching octopus shirts, to prove to myself that I was not actually freaked by the octopus that had scared the shit out of me only moments earlier. The girls seemed thrilled by their shirts, and asked to go into the store to check things out for themselves.
Iz popped right back out again and asked if she could have a mood necklace. I said "Brand new shirt not even five minutes old what? That means NO."
She whined. Then she said she wished her generous soft touch Auntie Bree was there (Auntie Bree bought Iz a Webkins after Iz got a big No from me). I then told Iz that 1) No means No, 2) Nagging means Hell No, and 3) Telling me, after I had just gifted t-shirts to her and her friends, that she wishes someone nicer was here to buy her more things means Give me your shirt right now and you can have it back in an hour if you stop whining and don't mention that fucking necklace ever again.
I also told her that I really needed to focus on helping her brother through his damp shorts crisis. Case in point: while we were talking, and even though I was holding his hand, Leelo managed to whip off his pants and was standing in the middle of the busiest section of the Aquarium, naked from the waist down. I have to admit that it was a fine demonstration of motor skills and coordination.
The girls then decided they were hungry. I asked the information desk people if we could get one of the many volunteers to help us with our trays as we navigated the cafe; they said they could help us but that there was also a sit-down restaurant. Score! We sat and were served and I had a much-needed glass of wine and the kids were so happy with the food that they couldn't stop eating and almost didn't talk at all. Both an adjacent diner and our waiter informed us that our kids were Incredibly Well Behaved. Wow.
I took Leelo to the bathroom, as it'd been an hour since his wave tunnel accident. Bone dry.
Leelo then told me that he "Want to go see the fishes!" and ran for it. We made our way over to the Open Ocean tank. Leelo slammed some people out of the way, and only gave a two-handed running smack-push to one big guy, but everyone was cool about it and downplayed my profuse apologies. Mali squealed to get out of her stroller to go see the jellyfish, so Jo and the big girls helped mind her so I could stay with Leelo as he spaced out in front of the Open Ocean tank.
Then we went to the potty again. Again he was dry. In that same post-second-underwear-accident pullup.
Next was the Whale play area. Mali loved dressing up in whale costumes and pushing all the cetacean and pinniped sounds buttons. Leelo did too (so much so that I downloaded him some humpback whale ditties from iTunes when we got home).
Then Leelo kept asking to go on the slide. I thought he meant Spash Zone, which is closed for another few months, but actually he meant the new Otters exhibit downstairs (where he'd only been once, in May). Smart boy!
Next was the Lower Open Ocean tank. Happy happy happy boy. Happy big girls. Happy Mali, naming all the critters gliding by. Though she kept insisting that the giant sunfish was a sea turtle.
Potty again. More dryness for Leelo.
The last place we visited was Jellies As Art. Leelo loves jelllies. Here is my favorite picture from the trip, of him in the Moon Jelly room (he is in silhouette). I got a real pang out of seeing him there, as I don't know if he'll ever understand my story about the magical time I was on a boat with his dad, at night, surrounded by glowing moon jellies. Iz loves that story. Mali will. It's possible that Leelo already does, but there's no way for me to tell. Not now.
We left Monterey and opted for the mountain route home. We joked about crashing Grace's home, but instead stopped off in Scotts Valley for more potty and coffee. Leelo was dry. He was also very grumpy about using that potty, and had to be encouraged to go.
Then home. Leelo's original pullup was still completely dry when he changed into underwear. Smart, talented, perplexing, wonderful boy.
Technorati Tags: autism, autism blog, autistic, Monterey Bay Aquarium, potty training
Just returned from Leelo's halfway very successful (the first half) birthday party, at which at least half the adult attendees were going through head-splitting stress (some openly, some not), to the news that Musharraf has suspended Pakistan's constitution and deployed troops in Islamabad. While my brother is in that same city, advocating for U.S. interests. I am not going to tell my mom. I might throw up, though.
Ep and Claud have taken Iz for a few hours. I am grateful to them; I needed the break from her continuous grievances and ungratefulness. Also grateful to Seymour for taking Leelo outside so I can type in peace while Mali works out her post-party sugar- and social-withdrawal by sleeping on the couch.
Update: My SIL called with the news that my brother is safe and sound and under lockdown in his hotel, and that he'll likely be leaving the country early. Fingers crossed. Thanks for the kind comments.
Sneaky Little Shit
Leelo has been doing so beautifully with the spontaneous and independent full-scale potty going. Clever boy! After a nice morning together getting coffee and going to the grocery store, I was in an optimistic mood. When we got home, I figured he could manage a trip down the hall to the bathroom while I sat at the other end, getting some work done. What I did not realize is that he decided I must accompany him to all potty sessions today, or else.
After about three minutes, he started yelling. Crap. I followed the sound. First I came across a neat pile of Leelo's clothes, nicely put to the side, and perfectly clean. Then I turned into the bathroom and saw -- shit everywhere. In the bathtub. On the floor. Smeared all over the toilet. Smeared all over Leelo. Gaaaah!
I must say, though, that if I got to choose a room for doing hazmat cleanup, it would be that bathroom. Nothing but smooth surfaces, a full bathtub, and two sources of running water. I was able to get the whole place sanitized in fifteen minutes, and we made it to the barber in time to get my boy's beautiful mop of curls shorn into something a little less Sandy Duncan-like. I spend the entire time looking into his face, helping him keep his head still so that the barber didn't accidentally give him a bald spot. He really is the most handsome boy in town.
Technorati Tags: autism, autism blog, autistic, potty training
Just in case you're sitting around wondering what kinds of gifts women with the pseudonym Squid would like, here are two: Squid Soap (Thanks, TKH!) and Lea Hernandez's SQUID! BLOG! TEMPLATE!
'Snot Halloween Without Mucus and Boils!
One of my favoritist bloggers in the multiverse, SJ of I, Asshole, is the force behind today's Can I Sit With You Story. Lucky us!
Even though today is the last day of October (the day by which we said we needed everyone's submissions), Jennyalice and I have decided to go on publishing stories. We'll probably move to a once- or twice-weekly format. So if you were thinking about sending something in but didn't, do.
Had a rather surreal day today. Bulleted version:
- Mali went to school in a pale pepto-pink frosty glittery velvet tracksuit. She has never had anything like that on her body before in her life ever. All I can say is that it was deeply on sale, and that in my browser it appeared to be darker pink terry cloth.
- Talked to Ep about her attempts to teach Picasso-style art projects to gradeschoolers, without a net.
- Met with private bankers. Still not sure why we get to meet with private bankers. But they make instant bill paying happen through verbal requests. Welcome yet weird.
- Got called to get Leelo early from school. Apparently if your kids is reported as having diarrhea (which only manifested in the classroom; at home his BMs have had cohesion) they have to stay home for a minimum of 24 hours. Imagine!
- Went to grocery store to buy Sangiovese as directed by Signora Blog.
- Stopped by Jennyalice's with both smaller kids, got to see Jake too and really enjoy the beautiful view from her living room. Realized that I am very bad at interacting with other peoples' kids. Maybe this is why I scored as "Likely Aspie" due to my elevated social blindness tally on the Aspie Quiz?
- Watched with jaw on ground as new dining room set ordered as gift by Seymour's incredibly generous parents arrived and was placed in its very own room. At this point, if you look in certain parts of our house, you might suspect that real grown ups live here and are hiding in one of the closets, waiting for you to leave so that they can discuss window treatments (retching noises) in peace.
- Fretted about my brother Chet, who is currently off doing official things in Islamabad.
- Watched Iz and Violet read, giggle, and gasp over Can I Sit With You stories. So far Iz likes Khaki best.
- Drove Violet home; Mali fell asleep on way and was effectively down for the night at 7 PM. SCORE!
- Cooked dinner featuring ragu sauce made by Signora Blog ("Italians do NOT eat meatballs!") and accompanied by the aforementioned wine, as specifically directed by her precise written ragu directions.
- Rocked through a 5.6 earthquake that shook all our windows and rattled all our glasses. Iz's face lit up; it was the first earthquake she'd ever felt. Thankfully it was minor. Took us a few beats for us to remember to run for the doorways, and collect all the kids in doing so.
- The entire family joined Leelo in his favorite sing-and-imitate game, in which he scatted and those of us who were awake had to imitate. Really fun. He had us going for almost ten minutes.
- Watched Leelo do several spontaneous, successful, and independent BM potty runs.
- Pinned fake leaves all over a headband and a green shirt so that Iz can be a "Cat up a Tree" for Halloween.
- Helped Iz print out summary/description for her California Desert diorama. Obviously I am biased, but I am so pleased by how well and fluidly she writes. And that she uses perfect punctuation plus words like "wondrous."
- Felt like chewing off my fingers, one by one, as Leelo remained active and awake until almost 11 PM (mostly on Seymour's watch, but entirely within earshot as I was trying to work).
Technorati Tags: autism, autism blog, autistic
A Story About Having A Special Needs Sibling
Today's Can I Sit With You story, The Real Meaning of Might, is our first to deal with the social implications of having a special needs sibling.
It's also our second story in a row in which injustice gets squashed by righteousness. Not that we're not loving all the angst...
Very busy weekend. Very busy.
Seymour's parents stayed with us this weekend. We all had a lovely time. Amazing what a difference having a larger house makes in terms of guests feeling comfortable while being able to both track and keep a safe distance from the cute, snuggly, unpredictable boy who lives here. (They did make special efforts to interact and play with Leelo, too.) Seymour's dad even watched all three kids for a while; his mom was very brave with Leelo (he has pushed her before) and spent a lot of time playing Ring Around the Rosie with Mali.
They were here to watch Iz on stage as a fairy in The Tempest (her school's production). Iz was cute and iridescent and even hit her marks occasionally. I spent the first half of the play freaking, thinking that my hearing was officially going, but at intermission everyone remarked on how they couldn't understand a damn thing. *Whew* Though I did forget to take my own advice of having a stiff drink before the lights went down (Elementary school + Shakespeare? Yikes).
Seymour's folks were a bit concerned over how "empty" our house is with respect to furniture. Although I know it appears somewhat spare, I don't mind because I have no sense of composition, plus to me big + empty = not cluttered + soothing. But because they are kind and generous and actually understand decorating, they gave us a lot of good advice on creating a more homey and less monastic environment. They also provided truly wonderful wines, all of which were dispatched. I can get along with almost anyone after a glass or two of wine, but am so happy that we were all able to relax enough to enjoy each other's company. Again, an honestly lovely time was had.
With my in-laws. My children were another matter. Leelo was the best boy ever yesterday; he tolerated breakfast with the other six of us, and then complied nicely and with no acting out while we went through three different furniture stores. (I don't think I would have been so well behaved at that age.) Too bad it made him so stressed that he had not one but two shit storms during the night. It's turned-back-around jammies for the indefinite future for our boy. I so love the "sanitary" cycle on our washer! And of course Mali refused to sleep until almost midnight, whereas tonight it was Iz who couldn't go to bed before 10:30 PM.
Had better go to bed. Tomorrow is Mali's Day (her turn for the Leelo's Day-style photo shoot from four years ago) and I'm not really ready at all. Perhaps I should have done something about my inch-long dark roots, or made certain clean clothes will be available, etc. Then again, it might be nice to get our real reality documented.
Keep nodding off as I write. To bed.
Technorati Tags: autism, autism blog, autistic
Today's Can I Sit With You story, Fish Face, is a truly inspirational tale from elswhere. Spread the news! And links! And comments!
I am still so amazed by and grateful for the instant support and considerable effort everyone has put into Can I Sit With You. We have more than met our goal of recruiting daily stories for the month of October, and even have a healthy backlog. We definitely have enough stories for the book. All of this in less than a month. I am truly in love with everyone today.
Technorati Tags: Can I Sit With You
Mali: Look, She's Cute!
I love puffy pom-pom pigtails on a tiny girl, don't you? Unless she's still up at 10 PM, which happens with alarming frequency even though she is simultaneously losing her afternoon nap:
In my office somewhere is a scribbled piece of paper listing all the amazing wonderful things Mali's been doing lately. But I can't find it. Here are some excerpts that I can actually remember:
I don't smell like poo-poo! I smell like Strawberries! (Said while sitting atop obvious and malodorous funk.)She makes me laugh and gawk and wonder where she came from, mostly because she intuitively knows how things work in ways that this intuition-challenged parent never quite figured out. At Godmother Stacy's girls' birthday party, she picked up a birthday hat and put it on herself, with no fumbling. Then she took the paper off of a cupcake, methodically and cleanly, before eating it. I still can't do that without making a mess.
Look! It's Daddy and Mali's bed! (Said upon entering the room containing her parents' bed, from which she has only recently been bounced.)
She says Thank You and You're Welcome appropriately and spontaneously. This I truly appreciate.
More gawking in wonderment: She and Iz are actually starting to bicker. Sibling bickering! Of the "Mommy! Izzy took my blanket and it's MY turn!" variety. Love it.
Seymour's parents are coming to stay with us tomorrow. I just realized that, due to Iz's being on stage tomorrow night while Seymour works back stage, said in laws will be trapped in our house with just me, Mali, and Leelo for a few hours. And my mother-in-law is really really nervous around Leelo, whereas he is unpredictable around guests. I have been calling around for a babysitter, but no luck. Ah well. It's not a situation that can't be helped by little bit of my mother-in-law's beloved Chardonnay.
And, hey! Though I slept with a barf bowl next to my bed last night, and despite my pipes gurgling ominously and loudly (according to Seymour) all night long, I did not succumb to this dual-ended splatterhose illness. I'm either very strong and healthy or extraordinarily fortunate.