Squid Squid Squid Squid

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.

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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

Mini-Izzy

Mini-Izzy

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!

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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.

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*I think she's around 26 months old.

Leelo's Oil?

Leelo's Oil?

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

Wide Berth

Wide Berth

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

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

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

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?"

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.]

Me: "..."

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.

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?

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

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."

Technorati Tags: autism, crap

Mullet-Be-Gone

Mullet-Be-Gone

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

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.

Other goodies:

• 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."

Last Tuesday the kids and I had dinner at Sewerage with Jo, with no Seymour, and no Leelo help. It was fine. Jo and I are not especially fine, but dinner was an otherwise pleasant and unremarkable experience--which is remarkable for a dining-out-with-Leelo event.

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.

Technorati Tags: autism, DAN!