7.17.2008

The Yearbook

Two days ago, Leelo came home with a yearbook.

It was a school yearbook like any other, with individual pictures of the kids in every class, group class pictures, and two-page collages of each class's kids in action. All the kids' names were included along with their pictures.

This made me so happy.

Leelo's school is a segregated county school. All the students are kids like him, kids who need 1:1 supervision and attention. In this environment, the special ed world, confidentiality can be an issue: when Supervisor M and I have email exchanges with Leelo's teacher, we've been asked to refer to my son only by his initials.

I visit Leelo's school at least once a week even though it's twenty miles away, to keep in touch with the class staff. I see all his schoolmates there, and I see them on the bus, but I've never known any of their names.

Now I do. Now I know the children with whom my son goes to school. Now I can greet them, now I can feel more like a part of their community. Leelo's community.

Yesterday, while Leelo was getting off the bus, one of the other kids jumped out of his seat and ran to the front. The bus driver almost stopped him, until she saw that he had a yearbook in his hand. "Leelo!" the kid yelled, pointing at my son's photo in several places in the class collage, "That's Leelo!"

"That's right, Leelo goes to school with you, doesn't he?" I said.

Big smile from the boy.

Leelo and I walked into our home, and sat down. I opened his yearbook, and scanned the classes until I found the boy's name.

Now I know exactly who my son's friend is.

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7.16.2008

Can I Sit With You?: Out Loud

Jennyalice and I have started posting audio versions of the Can I Sit With You? stories. Check out our pilot, SJ Alexander's All's Fair in Love and Mucus (click the Play arrow icon mid-page).

Also, for the amusement of my dear friend mb:

Blondie

This is me at this very moment, but this will NOT be me at BlogHer: Blonde, and sans makeup.

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Agent Orange

Me, walking Mali down the hall: "...and you're such a big girl now, you're getting so tall."

Mali: "Oh! Can I be four years old now?"

She also didn't realize that my hair was gray on the top. "It's orange on the sides, though." Which means it's time to sneak off to the salon. My lid is mostly fried, so I'm quite curious to see what they'll be able to do with it. "They" being the new salon people I'm trying out, as my beloved stylist/doula is off having her own baby and can't attend to my head.

If you're coming to BlogHer and want to say hi, look for the woman with radioactive orange hair. Or a red fedora.

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7.15.2008

BlogHer Bound

Social anxiety, you can kiss my butt. I am really looking forward to BlogHer!

Firstly, I am speaking, on an absolutely amazing panel: Blogging About Our Children With Special Needs. It's on Saturday at 1:45, and you'd better be there. My co-panelists are goddesses of special needs parenting writing: Susan Etlinger, Vicki Forman, Kristina Chew, and Jennifer Graf Groneberg.

Two short high school stories outline how I feel about the company I'll be keeping:
I loved being on the swim team, because I was pretty good, and won a lot of events. I started to think that maybe I should take the sport more seriously. Then we went to a swim meet at a high school across town, and one of their swimmers shut down our entire team. She swam the 500 freestyle -- that's twenty pool lengths -- doing the incredibly strenuous butterfly stroke. That girl was Janet Evans.

I also daydreamed about being a singer in a ska band. (Not that I could sing.) One day, as a bunch of us sat outside the ASB office eating our bag lunches, a friend casually trilled a line from The Special A.K.A.'s "Girlfriend." Her voice was like an electric current. I exclaimed, "Dude, I didn't know you could sing!" She laughed nervously, put her head down, and went back to her lunch. That girl was Gwen Stefani.
The different between then and now is that I already know about the world-class talent of my co-panelists. Speaking with them will be an honor.

-----

I'll also be selling Can I Sit With You? shirts and books and giving away stickers during the BlogHer Swap Meet, Saturday at 12:15 - 1:30, in the Olympic Room (second floor). I get to share a table with Minnie, who may sign her story in your copy of Can I Sit With You? if you ask nicely. I might also have a nine-year-old assistant helping me hawk those wares.

P.S. If you're not able to come to my panel but so wanted to, here's what BlogHerista Elisa Camahort had to say:

[Panel] recordings will all be collected by our partner ListenShare, and then distributed via iTunes etc. We should get links within a couple of weeks of the conference and will post accordingly.

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Kicking Literary Ass on Behalf of Our Kids With Special Needs

Spreading the word...

The deadline for general submissions to My Baby Rides the Short Bus was July 1, 2008. We are really pleased with the strong and thought-provoking essays we have received and look forward to publishing an amazing anthology. To fill some holes we see, we will still be accepting a small number of submissions on the topics listed below (or possibly others as suggested by you). We are particularly interested in receiving submissions from dads, young parents, older parents and/or people of color. Also, we have a disproportionately high number of essays about autism, and while we will definitely consider more of those, we'd like to see contributions for parents dealing with other disabilities.

Topics:

*Working outside of the system--creating alternatives
*Living in an intentional community with a special needs kid
*Homeschooling or unschooling with special needs
*Alternative treatments
*Out of home placements
*Kids growing older
*Disability activism
*Influence of parenting a child with disabilities on intimate parental relationships/relationships with other family members

Please email
shortbusbook@yahoo.com to discuss a deadline. If you email us, check also in your spam folder for a response-we have been finding a few messages have been filtered out by more sensitive emails, but we respond to everyone. Submission guidelines are available at www.shortbusbook.blogspot.com.

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7.14.2008

The Ramp

Iz was one of those newborns who didn't latch on, so instead of becoming a casually boobie-popping mom like the women who nurse their babies on every other page of Mothering magazine, I became a slave to trying to breastfeed, serving up bottles of breast milk, pumping and bottling breast milk, and sterilizing the pumping paraphernalia -- every two hours, all day and all night. I was a zombie. I couldn't believe people did this, couldn't believe having a baby was so hard. I didn't know how Seymour and I would survive.

But we did, and Iz eventually learned to nurse on her own. She became an easygoing decoy baby, the kind who tricks parents into thinking, "This is great! Let's try for another one!" Motherhood became suffused with the joy and delight of legend, even though it remained overwhelming. I would freak out if people asked me to watch their kids, though -- how could I ever take care of more than one? Iz took up all my time, needed all my focus, all my attention. I didn't see how I could take on any more responsibilities than just her.

When Iz was 20 months old, we had Leelo. He latched on immediately, I exhaled. The overwhelm increased, then receded. Yes, having two children was a challenge, but I found I was up to it. It became possible to bifurcate my attention, or even expand it to include more children than just mine -- though not by much. Surely, that was as much as could be expected from a parent? And who were all these people with three, four, or even more kids? How did they do it? When did they shower?

When Leelo was seventeen months old, we went on a family vacation with some fellow small-child-saddled friends. On the second day, the pediatrician father took us aside and told us that we should investigate Leelo's language and social delays. We did, and were handed an autism diagnosis. I was shattered. We were shattered. Then we went on the attack, with ABA, speech, and occupational therapies, specialized GFCF diets, cornucopioid DAN! supplements, and BioSet treatments. These approaches required enormous time and effort, but even so I made sure Iz got to do as many "regular" activities as possible. And we settled into some routines. Eventually I started to rediscover myself, spend time with my husband, write fiction, take long hikes with friends, and even practice my flute again.

Then we found out I was pregnant with Mali. By the time she arrived, we had jettisoned Leelo's BioSet and GFCF diet and all but the nutritionally reasonable DAN! supplements. We greeted Mali with a streamlined schedule and optimism, but even so our tiny house quickly felt like a cage full of howler monkeys. Iz wanted constant social engagements and conversation and hated homework and would act out. Leelo wanted more Mommy and needed 24/7 minding and would act out. Mali was an easy, easy baby, but even textbook newborns are not a part-time job. We almost lost our minds. Then we hired Therapist A to spend a few afternoon and weekend hours with Leelo. The needle came back out of the red zone, but, again, just barely.

Once I stopped feeling like I was hyperventilating all day long, I also stopped looking for cures for Leelo, and redirected my focus on his educational setting, his home program, his speech and occupational therapies, and setting up facilitated playgroups. I also started being more "out" with Leelo, and took him anywhere he might possibly have a good time. I wanted Leelo to feel comfortable participating in our community and society, and wanted our community and society to know and learn to feel comfortable with him, too. Leelo and I would teach the world that autism is not a crime, not shameful, and certainly not something people could ignore or pretend didn't exist.

But then Leelo started being violent. Unpredictably violent. Mostly towards me, but also towards his sisters and his therapists. And himself. Which is not an ideal behavior pattern for a diplomat: I can expect people to accommodate a kid who is quirky or different; I cannot expect them to put themselves at risk.

We have engaged the services of a behavioralist who specializes in severe violence and acting out. With her help, I hope we will understand the reasons for Leelo's violence, and come up with some positive reinforcements for encouraging him to redirect his violence into more acceptable (and safer) behaviors.

This is where we are right now. I cannot imagine being more stretched by parenting than I am right now. But I also know that I felt the same way at every step before this. Each stage felt like more than I could possibly handle. But, eventually I did. And now I am hoping that I will.

And this stage-based increase in competence and confidence is why I tend to believe parents who say they are overwhelmed, even if they are "luckier" than me, even if they "only" have one child, even if they are richer than Midas, even if it seems like they have all the free time in the world, even if their family is supportive, even if their crisis is something as seemingly frivolous as wanting a pedicure. I might smirk, but I also remember how it feels to be overwhelmed by one easygoing infant.

To everyone who has ever said, "I don't know how you do it" to me: Neither do I. I certainly never imagined that I could. But it's not as though I dove straight into this stage of parenting.

I ramped up.

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7.12.2008

Polyamory and Politics: A Nine-Year-Old's Perspective

Soon my knowledge of U.S. presidential history and politics will be insufficient for Iz's needs, but for now we have some rollicking discussions, and I am highly amused by the ways in which her liberal Bay Area filters color her take -- or don't affect it at all:
Iz: "Why did Richard Nixon resign? I mean, wiretapping isn't nearly as bad as adultery. Why isn't adultery illegal?"

Me: "Well, adultery is illegal in some countries, but in the U.S. we consider it to be a private matter between consenting adults. What Nixon did was absolutely illegal. He resigned before he could be impeached."

Iz: "Oh! So Bill Clinton and Monica Lewinsky were in a polyamorous relationship?"

Me: "Um, no. Bill Clinton committed adultery. Which should be his own private business, even if it was morally wrong, and even if it was a very stupid thing to do. If he and Monica Lewinsky were in a polyamorous relationship, they would have gotten approval from Hillary Clinton beforehand, and then President Clinton wouldn't have committed perjury when he denied that the adultery took place."

Iz: "Oh. I don't think I want to be in a polyamorous relationship."

Me: "That's fine, it's not for everyone. And you have to be a fairly mature and confident person to make it work."

Iz: "I still think adultery should be illegal. People get hurt really badly."

Me: "True."

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7.11.2008

When Peter Criss and Gene Simmons Collide

If Peter Criss Ever Mated With Gene Simmons

She's definitely my daughter, as I spent many many neighborhood playdates getting the boys to play KISS (as opposed to kissy face) with me.

Leelo and Compulsive Behaviors

Leelo has taken to compulsively touching the floor//his feet/the seat when he gets up from a seated position (stool, toilet, chair).

Supervisor M would like us to help Leelo eliminate these behaviors, as they disrupt his ability to transition from one activity to the next, and are a form of stimming that is not sustainable, especially if they develop into more elaborate and more entrentched routines (they are also self-reinforcing).

She would like us to stay next to him while he is seated, and gently but firmly block him from bending over/touching the floor when it is time for him to transition. She hopes that, with our help, this obsessive behavior can be faded out much like his previous obsession with taking off any clothes that had even a drop of water on them. And then we can spend more time helping him learn productive behaviors, behaviors that will lead to more independence and hopefully more happiness -- which is what we all want for this cute sweet challenging boy.

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7.10.2008

When Mommy Is All Done

There aren't many errands or outings left on which I feel comfortable taking all three kids by myself, but grocery shopping has always been one of them. Iz is good conversational company, and helpful in fetching items; Mali still fits in the shopping cart seat; and even though I still need to hold Leelo's hand, he is usually content to walk around and help load the cart with us -- especially if it means he can poach some baguette along the way.

On the 4th, somethings was different. I don't know what or why, but when I took all three kids shopping for BBQ fixings so that patient Seymour could enjoy the luxury of a shower, Leelo ran out of patience almost as soon as the sliding glass doors closed behind us. He yelled, and he kept trying to hit Mali. So much so that I had to ask Iz to steer the cart, as he is too strong for me to redirect with only one hand. Leelo spent that entire five or six minutes hitting me or trying to hit Mali. A rational person would have left, but I was so shell-shocked that all I could do was stay on target. I didn't have to buy that many groceries, and I figured that with Iz's help I could tough it out. Which I did.

And which, I realized after a beat or two, was getting me stinkeye from the rest of the shoppers -- all the people who actually liked or understood children must have been at the Fourth of July parade downtown. Even the staff at our small local grocery store was obviously flummoxed, because I usually have to refuse multiple offers of assistance when my children are behaving, but this time -- this one time I actually really did need help -- not one person offered to help me unload my cart, or help me to my car.

By the time I got into our car, I was crying, openly. This is not something Iz usually sees me do, and she was concerned: "What can I do, mommy? Is there any way I can help?"

I told her, "Thank you, sweetie. The best way to help is to promise me that if you see someone who obviously needs help like I did, you will offer to help them."

I cried all the way home.

When I got home, Seymour helped me unload the groceries. "Lucky Charms, huh?" he said, knowing that the cereal was not intended for our children, "That must have been a stressful trip."

I nodded. And I spent the rest of the weekend in a deep funk. What if this is the way things are going to be from now on, what if Leelo's behaviors keep getting worse, and not better?

It's been a few days, and I am feeling better. Leelo has had several successful outings since then, notably in twice-daily five-minute walks with me and his sisters, along a busy road, to the parking where Iz -- along with dozens of squealing girl scouts and their impatient parents -- jostles in and out of the camp bus. And I have been trying to spend more one-on-one time with him, be more in the moment with him. And consider that maybe, the answer is that he's just moody. Like his mom.

(And it's hard to stay upset about a boy who is so beautiful, anyhow.)

Handsome Leo

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Technorati Glitch

Technorati apparently only parses one URL at a time. So, even though this blog's URLs shroomhead.blogspot.com and www.squidalicious.com both resolve to the latter URL, to Technorati they are two separate beasts with two separate (and highly diluted) ratings.

I would so very grateful if anyone who has favorited or linked to me before would be willing to redo so at www.squidalicious.com rather than the blogspot URL. You can favorite instantly via this handy-dandy button, even:

Add to Technorati Favorites

And let me know if I can do the same for you.


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