More Reasons Why I'm Not Working for Pay Right Now
I'm rather fond of my brain; I think it is a nice one and that I will keep it even though it is not the prestige model I secretly hoped for. Sadly, though, it is not working well right now. Two days ago I forgot to take Leelo to his weekly Occupational Therapy appointment, even though I checked my calendar more than once beforehand because of my currently untrustworthy memory. Yesterday it didn't occur to me until twelve hours later that if a child pees on a rug at Mali's school in an area for which I am responsible, then perhaps I should clean said rug afterwards. I keep forgetting to add important items to my to-do list, which means that even the secondary brain I keep online is not entirely reliable.
I am grateful that no one relies on me for anything truly critical, or for anything paycheck- or deadline driven. I'm not in a position to meet anyone's expectations, especially my own. I am also grateful for the cushy life that allows me the luxury of a babysitter so that I can occasionally sneak out to a cafe and type nasty things about other peoples' children instead of working as a crucial cog in the machinery of truth, justice, and liberty.
Note to Another Patron of This Establishment
If your child is the only child in a restaurant and your child is repeatedly shouting at the top of her little lungs despite what appear to be your kind, calm entreaties, then may I remind you that it is customary to take said child outside of said restaurant until she either reaches the age of reason or she shuts the fuck up. FYI.
Technorati Tags: parenting
It's 11 PM. No one is sleeping except Iz so the rest of us are all fucking burnt. Leelo is howling downstairs for reasons unknown, Mali is behind me watching Richard Scarry. The house is totally torn apart--to accommodate Leelo's new bed that he likes to jump on but won't sleep in and which wasn't supposed to arrive until April--leaving innumerable opportunities for the kids to step on small sharp objects or release them from previously inaccessible places, or to pull furniture down on top of each other.
Leelo has been hitting us and everyone else, all day long. Iz tried really hard today to be kind and tolerant to him but ended up yelling "go away" every time he came near her and then got hit anyhow if I couldn't get there fast enough. I am fucking ready for Leelo to be off Fukalin; it may not be the only factor in his aggression but it is almost certainly a catalyst, and we saw a similar aggression upswing the last time he'd been on it for more than a few weeks and had disruptions in his routine. Five more days and we're done with Fukalin. Then Leelo will take a medication holiday of a week or so, and then we'll start him on Stratifera. I don't care if the new medication makes him cluck like a chicken as long as it also helps him be less of a danger to us and himself.
Technorati Tags: autism, autism blog, autistic, Iz, Leelo, medication
May the Routine Be Unbroken
Once again we have evidence that taking Leelo on a four-day crap-food-filled trip to San Diego, returning home only to have his dad leave for another five days is bad bad bad bad bad. Leelo is completely discombobulated.
All he's been doing for the past few days is hitting, shoving, or kicking, when he's not incessantly vocalizing with "shouting grunts." The only time he's not terrorizing everyone around him is when he bolts out into the yard for a circuit around the garden, hangs with Babysitter A or Therapist L for structured activities, eats, listens to "his" music in the car, or gets direct one-on-one eye-locked attention from me. Otherwise he attacks any person within range. His usual videos don't even calm him--the only one he'll sit still for is his beloved Totoro, but as soon as the dust bunnies start streaming out of the house he gets riled and attacks the TV.
He is pleasant enough to take on errands as long as we keep moving; the moment we stop he starts head-butting me in the stomach, unless we're getting back in the car. Tonight he punched me in the face because Iz interrupted while I was reading him his bedtime story. He has almost no spontaneous language other than talking about what he wants to eat or getting another straw pair to stim with.
He has mostly been leaving Mali alone because she doesn't react to him much. But Iz gives him huge reactions even though she knows it only encourages him, because she just can't help it. She is his primary target and it is really starting to wear on her.
Thankfully tomorrow we are moving him out of the room he shares with Iz, and into his own room. What was once our office/guest room will be Leelo's bedroom/therapy room. What was once our living room will now comprise our office as well. I don't really mind having so many multi-function rooms because I figure Seymour and I can either pretend we're urbanites, or that we're back in grad school except living together rather than five hours away from each other.
Anyhow. Leelo's behavior means that having people over is even more stressful than usual. Though I am grateful to Badger and Rook for coming over on Friday and bringing pizza and even better, Debbie. Most people don't know what the fuck to do with Leelo, but those three really make an effort to reach him and follow his cues.
Kids don't usually make the effort, and I don't blame them--at least not right now while he is being so unpredictable and violent. Iz's comfort level with her brother is visibly degrading, and so I am increasingly pondering a local siblings support group for Iz and her peers. The PHP sibs group sounds great, but 1) it is in Santa Clara (far) and 2) they only meet every eight weeks. I wonder if Deadwood City would sponsor such a group, or donate the meeting space, or if a local child psych would be interested in meeting with a group once per month.
Seymour is home now. We will probably need another few days to rearrange the house. And then we're not going to be doing anything different--not one thing--for a long, long time.
Technorati Tags: autism, autism blog, autism siblings, autism sucks, autistic, routine
I promised Badger I would post Iz's Robot comic strip. I have to run, so click through if you want to read Iz's description of each scene.
Technorati Tags: cartooning, Iz, comics
Squid Squid Squid Squid
1:22 PM 2/23 Updated with links galore!
For some reason Google is ranking this blog #11 for "Squid." That's ahead of Laughing Squid, Squidfingers, and Turbo Squid. Odd yet nifty.
While I would prefer that this site ranked within the first 50 hits for "autism" or even "autism blog," hitting the top fifteen with my pseudonym is not the crappiest thing that has ever happened to me. It also makes me less bummed over the random sliding of my Technorati numbers. Don't get me wrong--I know that people with better written and more entertaining blogs have shockingly worse rankings. But, if you wanted to link to this site or favorite it, and nudge me back skywards, I wouldn't mind ... not at all.
I will be grateful when Seymour gets home. Today I had two ten-minute windows to read in the car. Both times I fell asleep instead.
Negative sleep balance aside, I've much to keep me amused and grateful. Leelo participated in his school's kindergarten Chinese New Year parade, as the tail of the dragon. He was adorable. He got to follow a line of noisy and colorful kids/dragons in a path around the school, while all the other classes turned out to cheer them on. It was perfect for him! I was so happy to see Leelo and his crew join in and be welcomed by their school community, as they are usually segregated from the rest of the campus. I was even happier to have a Leelo school event that I could participate in with joy rather than unease.
Leelo misses his dad, though, and the crappy food I let him eat during our road trip has resulted in a lot of acting out, pushing, cackling, and having to be told multiple times and in therapy-speak to do things like put on his shoes ("Leelo! Put on shoes!") when lately one normally-voiced, normally-phrased request had been sufficient.
He still isn't on the playground. Supervisor M received no response to her Emergency Behavioral Plan. His principal is being slippery when I try to discuss it. I don't know what else to do. Those friends who were with me tonight after the very successful second DEPTAR (Deadwood Special Ed PTA) meeting got to see that I still can't talk about it without crying because there is no way to make Leelo understand why he can't go on the playground.
Anyhow. Iz is on Geography, constellations, and politics jags. She squealed when I showed her the Statistics section in the back of my atlas, and immediately read the entire ranked list of world's fifty largest islands out loud. She thinks that Alaska should secede from the U.S. so that it at least can sign the Kyoto Accord. She convinced almost all the attendees at last week's Rosenberg extended family dinner down in San Diego to come outside with her, individually, so that they could point out and discuss their favorite constellations. (Thankfully the Rosenbergs come from whaling and fishing stock, and know their skies.)
Forgot to write during yesterday's Mali transcript that our littlest girl doesn't just never stop talking. She is also a squealing, dancing, hopping ball of happiness and joy. She is unfailingly and appropriately polite without prompting, with the exception of affirmatives--those are all still, "Okay!" She mixes up her letter sounds sometimes--yesterday she told me that "K is for Care Bear," but usually she's spot on. She likes to count while dripping drops of juice from her sippy cup onto individual toes. She is a great mimic; five minutes after Iz was practicing headstands in the living room, Mali was doing the two-year-old semi-prone version and yelling, "Mommy! Mommy! Look at me! Look at me!"
All those Maliisms are great for vanity mommyblogging, letters to grandparents, and reconfirming neurotypicality. But they don't bring me the joy of watching my youngest during Circle Time at Iron Gate Nursery School. Neither Iz nor Leelo really grokked such things, but Mali dances, sings, claps, imitates, and anticipates the Circle Time routine right along with her classmates. That sweet, funny-looking baby girl has given me the gift of parenting a regular kid, and I am full of gratitude.
Technorati Tags: autism blog, Iz, Leelo, Mali, parenting, squid
Looks like the Gift of Gab bequeathed to Iz by my mother has struck our family yet again. Excerpts from being around Mali* for--I swear--less than five minutes:
My name is Mali! Her name is Izzy! Your name is Mommy!
Read me a book! Read me a story! I'm reading a book!
[Points to item of clothing] Is that yours? That's not mommy's shirt, that's Leelo's shirt!
Izzy, do you want to play with me?
Look, I'm wearing a hat! Do you like my hat?
Where's my mommy? Mommy, where are you?
My hands are cold. I'm cold! Are you cold? I'm cold. Are you cold? I'm cold.
I want to go climb. Come on! Let's climb!
Mali's hungry. I'm hungry. Are you hungry? I'm hungry for ... strawberries. Or ... ice cream cones. Or ... blueberries. Do you want some blueberries? I want some blueberries. Do you want some blueberries?
Noooooo! My blanket! My bear! My pillow!
Mommy's working on the computer!
And other cutenesses of late:
[looks at the dark sky] It's night!
[Calls from cold swimming pool to Mommy who is sitting in a nice warm jacuzzi and so has no intention of going in said pool]: Do you want to swim with me?
Now if she would only sleep! Last night she and her brother were up past midnight.
*I think she's around 26 months old.
This article on using fatty acids for autism diagnoses and potential symptom reduction is so astounding that it burst open my guts and released the intense hope I thought I'd abandoned years ago. I am now feeling disoriented and sick to my stomach. This may be the one time in my life that I regret not living in New Jersey, where the trials are taking place.
I know that the project might fail, and that it will likely take years to develop even if it does succeed, but I Want to Believe. Have you seen Lorenzo's Oil? The desperate part of me--the part locked away with those nausea-inducing hope reserves--wants that kind of cure for my son. I love him for who he is--anyone who reads this blog knows that--but I would also pursue treatment relentlessly if it turns out that Leelo is autistic because he is missing a gene and so cannot metabolize fatty acids properly, and that his condition is treatable even if it's not curable.
Two additional gut-grinder autism articles from the past week:
The battle on the autism gene identification front.
What life for Iz and Mali might be like in ten years.
Many thanks to JerseyGirl, Ep, Badger, my father-in-law, and all the other wonderful beings who send me these links.
I'm going to go barf now.
Technorati Tags: autism, autism research
The kids and Babysitter A and I road tripped back from San Diego last night. This morning Seymour left for a five day conference in some godforsaken frozen, chowdery New England city. While I am not feeling sorry for myself since I am a competent parent who knows where the local Burger King drive-throughs are located, I am pre-emptively tired and grumpy. FYI.
Leelo Loves La Jolla
I think we need to live in a beach house. Leelo loves the ocean and is so calmed by it.
Here is the nice thing about having kids who are rarin' to go at 6AM on a Saturday: You can go down to the beach and get a parking spot! And then have a nice leisurely walk along the shockingly beautiful coast and sit wherever you like and meet very few people. Seymour couldn't come on this trip (stupid having to work) so Babysitter A kindly agreed to sub for him. I wouldn't even have had the time to write this if she hadn't.
Also, Leelo pooped in the potty twice yesterday!!!!! (both times after I caught him crouching in "the position), and has not kicked his shoes off once except during the 9 hour car trip here two days ago. With the anticipated exceptions of un-fun restaurant visits, Leelo is having one of his best holidays ever.
Technorati Tags: autism, Leelo, Mali, road trip, vacation, visiting relatives
Hint: He's Not in Drag
Woo-hoo, one of my favorite games! Can you guess which extremely serious-faced DoD'er is my brother?
Iz vs. Gettysburg
This is a good example of the kinds of car conversations Iz and I have been having lately:
Iz: "Mommy, have you ever memorized the Gettysburg address?"The Civil War is a big topic just now: "Why did West Virginia split from the rest of Virginia?" "What does 'Confederate' mean?" "When Lincoln said, '...all men are created equal' did he really mean just the men and not the women?" Thankfully what little I know about The Civil War is enough to engage her, for now. She said as much; she complimented me on what she perceives to be the breadth of my knowledge, even though my primary information source is Margaret Mitchell.
Me: "Um, no. I know it starts with "Four score and seven years ago..."
Iz: "Yes! Four score and seven years ago our fathers brought forth on this continent a new nation, conceived in Liberty, and dedicated to the proposition that all men are created equal.
Now we are engaged in a great civil war, testing whether that nation, or any nation, so conceived and so dedicated, can long endure. We are met on a great battle-field of that war. We have come to dedicate a portion of that field, as a final resting place for those who here gave their lives that that nation might live. It is altogether fitting and proper that we should do this.
But, in a larger sense, we can not dedicate—we can not consecrate—we can not hallow—this ground. The brave men, living and dead, who struggled here, have consecrated it, far above our poor power to add or detract. The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us — that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion — that we here highly resolve that these dead shall not have died in vain — that this nation, under God, shall have a new birth of freedom — and that government of the people, by the people, for the people, shall not perish from the earth. [Text copied from Wikipedia.]
I know my hallowed status isn't going to last for long. I am savoring it.
Technorati Tags: Iz, third grade
Parents: What Does Your Heart Want?
I have recently encountered a large dose of context regarding what constitutes a "difficult" life with special needs kids. This context--which is confidential--makes me renewedly grateful for Leelo's abundant support, and broken-hearted for those families overwhelmed by stress while underwhelmed by resources.
I do wonder how our new SpEd PTA can best support such families in our community, especially those who need help but don't know how to ask for it, those for whom asking is painful, those who aren't as concerned about the help their kids need as they perhaps should be. Might be time for me to join the Outreach committee.
Parents: if someone was to offer your family a few hours of non-judgmental assistance, what would be your heart's deepest desire? And would you actually accept help, or would pride (or another emotion) get in the way? Comment anonymously if you like.
Technorati Tags: parenting, special needs parenting
I Don't Want Us to Be the Family Whose House Smells Like Poo
Mali and Leelo seem to have stopped barfing, Leelo for a couple of days now and Mali for about 18 hours. Which would be great if they weren't now working on exorcising their illnesses through the other ends of their bodies.
Leelo woke up this morning covered in "soup" from knees to armpits. My first reaction upon unzipping him and discovering the mess inside his pajamas was to be grateful that I don't barf easily; the second was more gratitude, this time for our total jammie containment system; the third was even more gratitude, to Seymour for leaving the wipes in the bathroom; the fourth heaping of gratitude was because we were in the bathroom to start with--Leelo's mess couldn't have been cleaned up in any other room without significant collateral damage. I'll spare you (additional) details beyond stating that I used all the wipes on hand, put Leelo straight into the bath, kneeled at the altar of the Diaper Genie, and then sealed the crap-saturated shirt in the wipes container for dealing with later.
I thought the container would seal in the smell, but no--the overload had just temporarily disabled my olfactory system. When I returned to our house after morning errands and kid-runs, I was greeting with a wall of Fresh Shit Stench. Which means that Iz's friend Marys had the same experience when she came over to carpool this morning, though she would never say anything. *Sigh*
Mali, even more my personal barnacle than usual when she's sick, has finally let me put her down. Time for some serious laundry and cleaning. My kids have enough to deal with without being the family whose house is "gross."
Mali's hair has looked like hell for a while now. If I resisted cutting off those straggly curls, it was only because it would be both our last First Haircut, and yet another reminder that we will soon be living with a rabid pack of teenagers. However, I can resist Seymour's entreaties on the subject for only so long:
Bye-bye, baby mullet. I guess it's going to business all the time--and, since Mali likes to do what her siblings do, right now that business is barfing with the occasional antipodal explosion. My goal for today is to do a load of washing that is not covered in vomit or poo.
Technorati Tags: Mali, mullet, first haircut
Notes on the Leelo We Love So Much
I wish the Monterey Bay Aquarium was in our backyard. Still, it's not too much of a bother to drive 90 minutes to get there for the wonderfully calming effect the Aquarium has on Leelo. He loves it there, he is at peace there. He is happy just to stand out on the various decks and look out at the ocean, but he enjoys watching the sea creatures and playing in the water play areas, too.
My cousin Nad and I took our kids there two weeks ago--without any Leelo help--and my boy was just fine. Though any time we entered an area where people were less than ten feet apart, I became Leelo's literal shadow, to ensure that he didn't act on any sudden urges to shove people out of his way.
Things have been getting better. We're still not doing the joyous I'm going to get you chasing and teasing and rolling of pre-Christmas, but we're having some nice interactions and some good language. When Seymour dropped me off at SFO last week, I told Leelo that I was going to go to Vancouver to Auntie Diamond#2's funeral. Leelo said, "Mommy's going on an airplane!" Which is really great language for him.
He has also been paging through his Dr. Seuss books and sitting through us reading them to him, which is reassuring as he hasn't been wanting to sit through any books except bedtime books for quite a while. I wonder if it's because Mali has been asking to watch her Dr. Seuss's ABC video lately. I'll need to get some more Dr. Seuss book videos from the library.
- We've been having a lot of fun playing "Spin Leelo in the laundry basket."
- Snuggling. Much more of this lately.
- Smiling in reponse to interaction, jokes. Wow.
- Great listening to requests using casual language, e.g., "Maybe you should put your straw in the trash, Leelo." "Close your eyes so I can rinse your hair." (That last one is major; I've been trying to get him to do this since he was two)
- Notorious non-biter/"I will only eat it if you cut it into bite-sized pieces" Leelo took a bite of something when I told him to "eat it like a banana."
I am wondering if Leelo is in a good space because it's been a few weeks since all the holiday madness and schedule disruptions. Which makes me worry anew; my dad's leukemia may have changed to a more aggressive form (bone marrow biopsy tomorrow to find out, ouch) so I would like to take the kids down to visit him and cheer him up. But this may fuck Leelo up all over again.
I am worried about his mushy speech, and how he seems to have lost his once-legendary ability to remember anyone's name.
Leelo's still not in a great sleep space, though since he's been sick for the past three days I have had to wake him up for the first time in what seems like months. We are definitely off Melatonin after another trial run at 3 mg. Though it did hit him like a "frying pan over the head," to use the words of a parent on a SNK eGroup, it also triggered those lovely 4 - 5 AM waking cycles. We stopped the Melatonin a week ago and he seems to be back to a more regular sleep pattern.
We have switched him from the largest size pullups to GoodNights as diapers. I am tired of poops blowign out his jammies and bedclothes everyday, sometimes twice (after bedtime, before getting up). He has grown and is still not interested in pooping in the toilet, so for now what we need is better containment.
Going back and looking at Supervisor M's notes from December, it seems that Leelo's behavior, etc., took a nose dive, with a couple week lag coinciding with the start of winter break--at the same time he went off rice bread and almond butter. Probably a coincidence, because I really don't think the DAN! (Defeat Autism Now) protocol works for Leelo, or the GFCF diet. I had a brief chat about DAN! with DoubleTrouble last night, but basically we've tried it all, with good-faith full-year efforts, for naught. But I also wonder if it would have been different with a different doctor--DoubleTrouble's doc (Travis) sounds really great--I never really saw our doc connect with Leelo the way DoubleTrouble has described her doc understanding her boys' health and symptoms. In fact our doc originally questioned whether or not Leelo was autistic, whether he wasn't just beyond ADHD (which I have to admit I sometimes wonder about, too).
Although, since I'm sitting here spiraling, I might as well add that in my bones I think Leelo has a specific genetically based autism syndrome that has not yet been identified. It amazes me how many autistic children and adults have faces that look Just Like Leelo's--big round eyes, upturned noses, and triangular mouths.
We are still working on Leelo's behavioral plan, which (thankfully) will be done by Supervisor M. Yet another amendment to IEP--apparently Leelo is the local winner for number of IEP addendums. I also didn't realize that a behavioral plan is such a big deal--the district only does about five of them per year. Leelo is such a multiply exceptional guy. Special, that's him!
We have recently starting tracking those daily factors that may contribute to exceptions from his exceptionality with a collaborative Google spreadsheet that everyone on Leelo's team can both view and edit. So far it has proved marvelously helpful.
Speaking of Leelo's team, Therapist Y has agreed to come back and will be doing the Tuesday afternoon home session so that Therapist L doesn't get totally burnt out. Leelo (and his sisters) were very happy to see Y during last week's first session, and so was I--his energy and enthusiasm are infectious.
The meds questions are still ongoing. Last week when Leelo was sick with a cold (as opposed to now, when he has the barfs and shits) he had three potty accidents. Last week when I was in Vancouver he had another accident at school. Leelo needs to live in a world where there are no cold or flu viruses, and where everyone is home in the same way, every day. That would be good for him. In the meantime Supervisor M has recommended that we look into Singularity for his season allergies. She says that (anecdotally) children who usually react strongly to most meds tolerate Singularity, and that it's a prophylaxis rather than a remedy.
Supervisor M did really great data tracking on Fukalin. Basically, Leelo's behavior at home in session isn't that different on Fukalin or off it--but he is definitely more aggressive on it. So Fukalin really not a good choice for our boy.
Dr. Sheyenne has recommended that we investigate Stratifera. Also Seymour says his research and observation and parental instinct suggest that antiepileptics may be a better choice for our boy. Leelo's EEG did indicate pre-seizure activity in his brain, there is some precedent, and Seymour reminded me that when Iz had her altered phases both in and for a couple hours after her febrile seizures, she acted a whole lot like Leelo does all the time in terms of disorganization, mania, and even chewing (though it was IV tubes in her case). Will ask Dr. Sheyenne.
Think that's it for today.
Holy Shit: Reversal of Autism Spectrum Symptoms/Rett Syndrome
Via Seymour. It's about gene therapy in mice rather than people, but may be a true first step in moderating the more disabling symptoms of Rett Syndrome (breathing and gait abnormalities, tremors, lack of mobility). Fingers crossed, especially for Rett families.
Leelo vs. the Dentist
I am bursting with Leelo pride today. Can't keep it in! Our boy went to the dentist and sat in her dental chair and let her both clean and scrape his teeth! All firsts! If I hadn't needed to rub his hand while telling him what a good smart brave boy he was, I would have taken pictures for submission to Ripley's.
Leelo having a successful, uneventful visit to the dentist is not something I would ever ever have anticipated--I fully expected the appointment to include a serious discussion about sedation dentistry. But our boy made it through without help; no one drugged him or restrained him or used a device to force his mouth open. He complied purely because he understood that we wanted him to, and he trusted us, even though I'm sure he was still very scared. Wonderfully brave, brave boy.
His dentist has several autistic patients. She says most of them do come around eventually, when they get used to seeing her (and get older) and realize that she's not going to hurt them. If you're a parent of a younger autistic child who thinks "the dentist" means "the devil," please know that there is hope.
Today's Dose of Righteous Indignation on Leelo's Behalf
Ran into a a friend who is a parent from Leelo's old Iron Gate class today. Her older son used to go to Cloy Roud, Leelo's current school. I told her about Leelo's being banned from the playground until his behavioral plan is put in place sometime in April.
My friend made many disbelieving faces. She told me to go on in and ride that principal's ass, as when her son was intentionally knocked over by another student on that same playground, he hit his head on the ground so hard that it took four staples to close his scalp. The child who pushed him is still at the school, and still doesn't have a behavioral plan. Seeing as her son's event occurred under the current principal's aegis, I am sensing some discrimination towards Leelo here. Just a smidge.
I then spoke with Al, one of Leelo's classmate's moms, during pickup. I told her that I was trying to go the non-confrontative route, (donating books, offering to go in and do autism awareness presentations, etc., even though the principlal made me feel like an ass for implying that she and her staff were not set up to deal with autistic kids, even though it's true). Al told me that it was okay to explode on the administration, that it was useful for them to see how upset I am. And I agree, but I also know that I would get too furious and tearful to make any headway. Besides, Supervisor M and I agreed that we would try for a non-confrontative solution first, including an Emergency Behavioral Plan to get Leelo back on the playground a.s.a.p.
Later on I spoke with Rosie, Leelo's aide, about how he was doing during second recess, which is the one from which he's banned. She said that Leelo keeps asking to go out and that it makes him sad not to go play, and he doesn't understand why he can't go. Those of you who know Leelo know that he has to be really motivated before he'll use verbal rather than demonstrative language to ask for something. My heart is breaking for him, anew.
Mali fell asleep early today and even let me transfer her sleeping self to a beanbag in the living room, so I got to spend a good long hour one-on-one with Leelo before Therapist L arrived for his afternoon session. He is such a wonderful boy, so sweet and alive, so vibrant and cheerful. I spent a lot of time hugging him and telling him how much I loved him, and he gave me hugs back until he was done, at which point he suddenly shoved me away (those of you who have cats will recognize this behavior). That's okay. I am trying to be more attentive to his non-verbal cues, but he is so adorable and huggable that it's hard to resist giving him more physical affection than he'll tolerate.
Technorati Tags: autism, autism awareness, behavioral plan, outrage, parenting, righteous indignation, special education, special needs kids, special needs parenting
Doesn't Everybody Need Ski Week?
Here is what you really want in your face during the two free hours you have after getting in late from a flight the night before, waking up far too early with your autistic son, working at your toddler's co-op nursery school, spending all mid-day running your children to and from schools and appointments, but before you have to make yourself presentable and then drive twenty-five miles to your husband's company's launch party: An eight-year-old who is supposed to be doing her homework but is instead throwing a screaming tantrum because she "can't understand why you've never taken me to see real snow."
Yet another discussion of how people generally react better to non-accusatory inquiries ensued. Still, I was wondering where a little girl whose grandparents regularly truck snow in from Snoqualmie for Christmases that include a personal visit from Santa and his for-real reindeer gets off on implying that she is somehow lacking in privilege. She then told me that a school friend's mother was surprised when Iz told her she had never been skiing or played in the snow because, "...it is uncommon to live in the Bay Area all your life and never go to Tahoe." RIGHT. As if everyone has the free time and cash to participate in ski week. *Splutter*
I would be more shocked if this wasn't the same mother who pulled her kid out of Leelo's weekly facilitated playgroup because said kid "didn't want to come anymore." Now, there is nothing wrong with her kid feeling that way, and I don't want kids coming to play with Leelo who don't want to be there. But I think that when humans coexist well it is often through a tacit agreement to weave white lies around each other if 1) emotions are at stake and 2) more good than harm will result. I do believe in honesty, but I also believe in empathy and tact. And I believe that parent could use a refresher course in both.
Technorati Tags: complaining, Iz, Leelo, parenting, pettiness, raising girls
In My Language
Several people, including Signora Blog and Melle, have sent me a link to this thought-provoking autism video. Please do take the time to watch the whole thing.
Technorati Tags: autism, autism acceptance, autism awareness
Be a Cephalopod for a Day!
Here is the schedule I wrote up for Seymour so he could properly pinball the kids around town all yesterday while I was in Vancouver toasting/roasting/burying my Auntie Diamond#2 and her larger-than life.
My partner did a great job, better than I would do had I his job for a day, of that I'm certain.
Get all three kids up and dressed before 7:30, ideally.
- filled water bottle
- Aikido duffel
- filled water bottle
- snack (croissant, etc.)
8:00 Take Leelo to school, park, walk him to class
8:30 - 9:00 Drop Mali off at time agreed with JP
11:00 Pick up Mali from JP's
11:25 (do not be late) Pick up Leelo from school, TAKE HIM TO POTTY AT SCHOOL
12:00 OT at FDR School for OT with Therapist K. Park in upper parking lot and take Leelo across playground to the Motor Room (lefthandmost room facing playground). Play with Mali on the playground or take her for a walk in stroller, but don't move your car or you'll never get a parking spot at
12:30 when you pick up Leelo from OT. TAKE HIM TO POTTY AT FDR.
12:45 Feed Leelo and Mali snacks, get ABA room ready:
--Make sure computer is on and set to my profile (pword b*****o**)
--Nothing on center area of desk or chair
--Nothing on Leelo's table/chair
--Snack/reinforcers and water out and waiting
--Downstairs bathroom presentable
1:00 Therapist L arrives to do ABA with Leelo at home.
2:50 Iz will get ride from Ream's mom to Aikido.
3:30 Leelo's Therapist L session over
4:20 Pick up Iz from Aikido and make sure she has signed in. No, she can't have a playdate.
5:00 Iz needs to do Monday homework and reading.
7:30 Scrub kids + their teeth and put them in jammies.
9:15ish pick me up from airport
I think that's it.
Technorati Tags: ABA therapy, autism, parenting
Next Stop: Alcatraz
[2/4/07 I am writing this from SFO where my computer keeps teasing me with a "Free Airport Wifi" connection that never materializes.]
[2/5/07 Now I am trying to publish this from YVR where I am being tortured by an intermittent "Hotspot temporarily unavailable" message. Damn you, Telus!]
Yesterday the girls and I went to a local school's authors and illustrators fair. It was well attended and wonderfully inspiring. The girls went gaga over the amazing selection of books to browse. Several authors and illustrators had salons. And the savvy organizers had pizza and popsicles for sale, right next to the playground (ooh, happy Mali).
And, oh my, the authors! I always want to jump on their shoulders and suck out their brains, or at least peek in their ears for clues as to how in the world they do what they do. But I didn't bring Mali's stroller and didn't want to put her down and lose her in the crowd, so, next time.
We got to chat with Milly Lee, author of the wonderful book Earthquake! It was inspired by her mother, who was eight years old when the 1906 San Francisco earthquake struck. Milly said that her mom wasn't scared during the earthquake, because, "She had never stepped foot outside of China before so it was all part of the adventure." Understandable; we Californians sometimes enjoy the roller-coaster thrills of our larger non-destructive earthquakes.
We also got to go to a presentation by Gennifer Choldenko, author of the Newberry Honor book Al Capone Does My Shirts. I didn't get to stay for much of her talk as Miss Mali started throwing a twoful tantrum, which was too bad as I missed any discussion of the book's autism themes. But I did appreciate Ms. Choldenko's great sense of humor in relating how her goal after having "about fifty-two" manuscript rejections was no longer to get a book accepted but rather to get a longer rejection letter--that way she knew she was making some headway. When she got a full one-page rejection, and then a two-pager after that, she knew she was getting somewhere.
Ms. Choldenko was very diligent in her research for Al Capone. She even signed up to be a docent on Alcatraz so as to experience the island's daily and seasonal rhythms. Iz was entranced by her description of life on Alcatraz and I think we'll be going there very soon, possibly on the night tour she so heartily recommeded.
Later on we lined up so that Iz could get her now-very-cherished copy of Al Capone signed. Ms. Choldenko was very generous with her time, chatting pleasantly with with everyone who came to meet her. I am especially grateful for her patience, as when our turn arrived Iz came right at her with all filters down: "...and my mom finally got me this shirt with words on it and I'm so excited because it's what I've always wanted and look, it says 'Yes, I'm perfect, now stop staring,' and don't you think that's funny and it's even sparkly too and this is my little sister Mali and she's not autistic but our brother is and Mali took apart our globe but that's okay because it was so old that it had the USSR on it [eyeroll] and then she took the top part and started walking around with the Northern Hemisphere on her head!"
And Iz got a huge belly laugh out of Ms. Choldenko with that one. "You're quite a girl, Isobel," she remarked. Iz was deep into Al Capone when I left for Vancouver. I can't wait to get home and find out what she thought of the book. I'll bet she's itching to send Ms. Choldenko some compliments of her own.
Technorati Tags: Al Capone Does My Shirts, Alcatraz, autism
A Sojourn Project Final Thank You
My friend Amy leaves in eleven days to go on the Sojourn Project. Yep, she made it! I saw her on Friday and she was in a state of such intense anticipatory glee that she couldn't stop squealing (she is sixteen). I am so happy for her, and so jealous. Can you imagine, getting to meet the people who made the civil rights movement happen, people the rest of us can only read about with admiration and for inspiration?
All you wonderfully generous blog friends need to know that Amy's trip wouldn't have happened without you. We got her close and confident enough that she pitched her story to a local Salvadorean radio station; they let her go on the air to talk about the Project and ask for the final couple hundred dollars that she needed. And she got it, almost instantly!
Friends, thank you, thank you, thank you. Especially MB T., who gave a final very generous donation which I believe was never acknowledged (D'oh!). Sorry, and thanks one more time.
Technorati Tags: civil rights, Sojourn Project
A Package From the Land of WTF
So, I've got a friend in Mali. (Really. He's actually from Timbuktu.) We mostly connect via email, but it is always sort of surreal as I suck at reading or writing French--his country's official national language--and he doesn't write French that well, either, even though he's smarter than most people you've ever met. His emails stick in the craw of online translators and come back only halfway digested, leaving me even more befuddled than I usually am.
Recently he sent an email that appeared to be about jewelry. I thought he was sending gifts for my girls. Turns out he was sending me a shitload of jewelry to sell for him. Except he never asked me about it beforehand--by the time he sent the initial email the package had already left his country.
As you can see, the jewelry is gorgeous, hand-tooled silver, and it's from Timbuktu, which is always a great conversation point, but, uh ... fuck. I have no idea what to do with it, I don't even like to wear jewelry, and anyone who's ever sold stuff on eBay knows that even a single auction can suck down inexcusably huge chunks of time and effort.
Want to buy a bracelet? Sigh.
Waiting to Cross the Street at Night
Last night I had babysitting for a few hours. Yeah! So I went by the downtown crack-laden tortas supplier* (just typing about them makes me drool) for some dinner to sneak into a movie. A guy walked up next to me while I was waiting to cross the street. We exchanged pleasantries about how brutally cold it was for California, even in February.
"Dude," I said, "You're wearing a hoodie and you have no hair on your head. Why don't you put your hood up?"
"Uh, no... I don't really want to do that."
"...Okay. Well, have a good one, then."
I skittered off to get my dinner, wishing no one had ever had to worry about whether or not it was prudent to pull up their damn hood on a freezing cold winter night.
*Yes, I did choose that link because of the endearing animated lunch bag.
Hurray, Seymour's site launched today! It rocks! Go fill up the blog with comments! (But don't link back here, please.)
That's all I have to say about anything until Seymour or I get more sleep.