4.30.2008

That Baby: A MotherTalk Review

That Baby.jpg

After my three-year-old and autistic seven-year-old watched the music videos on the That Baby DVD, they refused to listen to any car music except the That Baby CD's "Butterflies!" ("Happiness Runs/Circle Game") and "Flowers!" ("Garden Song [Inch by Inch]"). Though after hearing the introduction to the instrumental piano piece "Get Together," three-year-old Mali declared, "It's soooo beautiful!"

She's right. That Baby's music is beautiful, and the accompanying videos are obviously a work of love and considerable care. As a bootstrappy, DIY kinda gal myself, I have to respect the effort that the creators put into this project. I especially appreciate that their videos include kids with disabilities having fun with typical peers.

I just wish I liked That Baby, or thought it lived up to its very sweet motto: "Acoustic rock classics for kids and the grownups who love them."

But I don't. I think it's an example of the kind of kids' music that drives me batty: tunes that parents like, and want their kids to like. (Dan Zanes is a good example of this genre.) My kids refused to listen to any of the other songs on the That Baby CD, or watch the non-butterflies or -flower videos. Even Mali insisted on skipping "Get Together" after that first declaration.

Why? Probably because most of the songs are really poppy, in a Disney Channel afternoon programming kind of way, and simply do not feature the structured phrasing and articulation younger kids latch on to. I wonder if my kids rejected those songs and videos because all the video imagery is obviously for very young children, whereas the music itself is quite complex.

And, again, much of that music is exquisite, with lovely vocals (the man who sings "Pony Boy" sounds like Lyle Lovett, whose voice is the closest thing this world has to a siren's call), extraordinary musicianship (established names like Tony Furtado), and thoughtful arrangements (the cover of The Beatles' "I Will" is a jewel). But it doesn't sound like kids' music. It sounds like soft adult rock, or lost Lilith Fair tracks.

There are obviously many families and parents who think That Baby is wonderful. Perhaps, as I teach my kids to say, That Baby is simply "not to my taste." But I also suspect that if I recommended That Baby to my own friends, or put anything other than "Happiness Runs" or "Garden Song" on my family's annual Kids' Music holiday gift compilations, said friends would kick my ass. And that would probably feel about the same as having to write this less-than-positive review about a project so painstakingly parent-produced.

But, hey, you can always do what I advise my eldest to do: research and form your own opinion. Go to the That Baby website, listen to songs from the CD, and watch a video preview of the DVD.

If you decide to place an order, enter the coupon code "MotherTalk" when purchasing and save 20% on your entire order! From now until May 18th, all orders using the coupon code "MotherTalk" will be entered in a drawing to win a new iPod nano.

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4.29.2008

My List of Leelo Home Program Areas to Work On

My List of Leelo Home Program Areas to Work On

Leelo's home team is meeting tomorrow for the first time in a few months (our schedules have not been compatible lately). Leelo is doing a lot of amazing things, has made a lot of progress in this last quarter. But the last few weeks have been rough. I sent Supervisor M the list below to detail what I'd like to see emphasized in his home program.

-Managing violence. When Leelo gets really upset, he hits, scratches, and pulls hair, and is starting to really hurt both me and Seymour.

-Increasing tolerance for drops of water on his shirt. I understand that it is unpleasant to wear a shirt with a bit wet spot on it, but Leelo freaks if he even thinks a drop of water gets on his shirt. He went through four outfits -- including six shirts -- on Saturday. I have been having some luck getting him to keep the shirts on/distracting him with LOTS of veggie booty and straw reinforcers.

-Bolting/Traffic Safety. On Sunday night he ran right out in front of a car in a parking garage, though Seymour yanked him back. Leelo had no awareness of the car whatsoever. This bolting might be a problem if he is to move to an inclusive campus in two years. At his current (segregated campus) school, any loose kid needs immediate attention. Not necessarily the case at a school that includes typical kids.

-Teaching me and Seymour to use TeachTown so we can help Leo with it, too.

-Generalizing the shapes of real-world objects. He is finally starting to do this; previously the only attribute RW objects had was color. Yay!

-Better hand washing. His hands frequently smell awful post-toileting (i.e., like ass), and we have to help him re-wash them.

-Keeping his shoes on in the car. This is driving me and the bus drivers crazy. I reinforce him vocally and continuously for keeping his shoes on during car trips, but too often as soon as we arrive at our destination the shoes get kicked off.

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Getting the Grump Off My Chest First

Getting the Grump Off My Chest First

Ah, to be back home and merrily steam-cleaning a house in which the cats decided that the only appropriate response to our disappearing for three days was to pee and shit in every corner. Now, our trip was wonderful on so many levels. But the final series of events were grumpifying:

  • Our flight was delayed by an hour.
  • Seymour kindly told me to go have a drink with Jennyalice & the rest of our crew and children while he watched Leelo in the departure lounge. Which was good! Sage fed me pizza, Jennyalice & Descartes bought me drinks, Godfather M took some of Iz's & Mali's pizza to Seymour. But then Leelo proceeded to attack Seymour, causing such a scene that a nearby kindly woman came over and offered to help.
  • Leelo tried to take a shit in his pants during the flight. I hustled him to the bathroom, to discover that Leelo, me, and a backpack with changing supplies are more excitement than a single airplane bathroom can contain. Had to resort to holding the backpack over my head while Leelo did the rest of his business. I'm not sure exactly how I changed his pants and underwear.
  • After disembarking and picking up our bags, we walked into the parking garage to discover that Miss Mali must have done her "Ha ha, I turned on the interior lights" trick while we were unloading the car for our outbound flight and were too busy to notice. The car battery was completely dead. AAA took over an hour to arrive. We were not ready to go until 9:30 PM, a good hour past the kids' bedtimes, on a school night.
  • While we were waiting for AAA, Leelo demonstrated his complete obliviousness to traffic safety by running out in front of a huge black sedan, and was yanked back by Seymour only a couple of feet away from its fender.
Despite all this, despite the fact that Leelo had an episode in the middle of the post-CISWY Seattle that took out Babysitter A and me in the space of five minutes, despite the fact that Leelo simply did not sleep and so neither did we for the entire weekend, I would happily do this trip all over again. The non-shitty parts and the amazing people were that good. (Although, since Seymour took the bulk of the wee hours Leelo care, it will take very careful planning on all of our parts before he agrees to travel with Leelo again any time soon).

I just wish we could figure out how Leelo can have a better time traveling. We are very much a traveling kind of family.

The crazy-amazing-fantastic parts of the weekend are coming later, I swear. In the meantime, I give you Miss Piggy. TOTALLY NSFW.



(Fanks to Minnie for the link.)

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4.28.2008

Duck Feeders

Duck Feeders

While you're waiting for updates from CISWY Seattle, see if you can guess who these duck feeders are, and who's bantering behind them.


4.25.2008

Can I Sit With You? Live in Seattle TONIGHT

Can I Sit With You? Live in Seattle TONIGHT

I have it on good authority that you Seattlites are the spontaneous kind, so we'll see the rest of you at the door. You might want to get there a tad early to make sure you get a seat.

Can I Sit With You? Live in Seattle
TONIGHT 8:00 PM
Annex Theatre
1100 East Pike Street
Seattle, WA 98122

Sadly, Els Kusher will not be able to join us tonight. But we look forward to sitting with the rest of you.

We will be back with videos, pictures, and new stories on Monday.

P.S. Jennyalice and I are going to be interviewed by the NPR reporter after the show. EEEEEEEEP! I promise not to swallow my words or make funny nervous faces. Not that you could see the later on radio. If the story makes it there. Regardless, I have a feeling that when Jennyalice and I are eighty years old, we'll still be talking to people at bus stops about tonight's event.

4.24.2008

Can I Sit With You? Seattle, and Beyond

Can I Sit With You? Seattle, and Beyond

CISWY Seattle is tomorrow! GASP!

If you'd like a guaranteed seat, please buy your will call tickets by 8 AM Friday:

Buy Tickets Now




If seats are still available after will call cut off, I'll post a notice in this space, and you can buy your tickets at the door. Cash only.

See you there!

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More CISWY Events, back here in The Bay Area:

MAY 7, 7:30 PM
Angelica's Bistro, Redwood City
863 Main Street
650.365.3226
No Cover, Donations Accepted, Reservations Recommended

This is a really exciting event for us, as several of our readers have never before agreed to perform their stories in public.

Angelica's is a lively, versatile restaurant with a charming atmosphere and a considerable wine and beer selection. It is also family-friendly, but as usual please review the stories below before deciding to bring your children along.

Readers:
Jen Scharpen
Elaine Park
Lea Cuniberti-Duran
Judy McCrary Koeppen
Shannon Des Roches Rosa
and Jennifer Byde Myers

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We're also going to be at Book Passage in Corte Madera on Saturday, August 9th, at 4 PM. I wonder if they'll rotate our photos in the header alongside Mario Batali, Dave Barry, Isabel Allende, and Anne Lamott?

Sneak Eep: Lea Hernandez, cartoonist, manga sage extraordinaire, and artist for the Can I Sit With You? book cover, will be joining us.

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Finally, I've been asked to be on a panel at BlogHer'08! The delightful Susan Etlinger will be my fearless leader. My only regret is that I'll be in direct conflict with Sarah Dopp. But it's a great opportunity for anyone who wants to see if I balk as much in public as I do on this blog.

4.23.2008

Remembering My Dad Appropriately

Today is the anniversary of my dad's death.

I could not travel to be with my brothers or my mom, and none of them were able to come out here, though my brother Chet tried.

But my mother was out last week, to attend Grandparents' day at Iz's school. She and I decided to have a memorial morning of our own, ahead of schedule. We drove out to the coast, picking up some appropriately wholesale cut freesias and tulips along the way, and looked for a place to cast our blooms upon the waves and say some words about my dad.

We didn't find any such place. Plus it was bloody cold, and windy. There are no picturesque piers anywhere close to Half Moon Bay, or at least not that I could recall in the time we had available before doing the afternoon kiddie pickup rounds. So I asked my mom if she would like to go to the local hilltop, coastal view memorial park, and find a spot there to remember my dad. She agreed.

I showed her my favorite spot on the north end of the hill, with its view of wild canyons and christmas tree farms. But what I had not noticed before is that in the center of the hillside is a memorial bench with the name "Artag." (My family name is D'Artagnan.) My mom and I both squealed in delight.

My dad was a wonderful, sweet, thoughtful man. He also believed in utility and cutting corners. He insisted on being cremated, mostly because the thought of wasting money on a casket and plot was abhorrent to him. He didn't see why he shouldn't join my neighbors' Fourth of July celebrations, inviting my family to come with him and eat their delicious food, too. He loved nothing more than getting something cheap, or for free. So what better way to celebrate him than by co-opting someone else's memorial bench?

My mom and I took turns sitting on the bench and covering the missing pieces of our name with legs and flowers. My mom said a prayer. We both giggled. I silently thanked the people we were mooching from. Then it was time to go.

This morning Iz had an appointment to pick up her new reading glasses. The appointment only lasted five minutes, so I asked her if she wanted to come with me to see the bench and think about her Pepere. She agreed:

Co-opted Memorial Bench

She and I also agreed that, in honor of my dad, we would always:
  • Use as many coupons as possible
  • Drink wine from boxes and 1-gallon jugs when we could
  • Not shrink from putting the occasional bag of trash in someone else's dumpster
  • Try to think of other people first
  • Try to be kind and friendly to everyone
Since it's been a year, I finally deleted my dad's cel phone number from my phone. It was less hard to do so after my mom realized last month that his account was still active and deleted it. Before then I could still his hear his voice whenever I wanted.

I miss my dad.

4.21.2008

Get Thee to Thy Short Bus

Get Thee to Thy Short Bus

This was a hard weekend, and a really hard morning. One where I spent the morning crying, worrying that my future Leelo will be medicated into catatonia or living in an institution because of his unpredictable and intense violent outbursts.

I guess I can be grateful that he seems to save the really nasty behavior for me, Seymour, and his therapists/teachers. And his sisters, though he tends to "only" shove them. But what mother would not be sick in her heart upon realizing that her three-year-old daughter has learned to keep her brother in sight, and to skirt around him as quickly as possible? Even though Mali still tries to give Leelo presents, to talk to him, and to hold his hand while they're walking. But how long until she becomes ever-wary? How can I argue with Iz when she tells me how unfair it is to be attacked by her brother?

Of course I know that a lot of Leelo's behavior has to do with having a cold or allergies or headaches (possibly migraines). Or constipation. Or all of it. He's not feeling right in his body, and his irritability is understandable. But I am worried that he will never be able to understand that, no matter how crappy he feels, he should never open-handedly THWACK THWACK THWACK my back so fast and hard that it feels like his hands are branding irons, use his nails to gouge tracks down my arms, or give me a full across-the-room running shove to the gut so hard it makes me want to throw up and tweaks my neck and back for the day. If we can't help him learn to tone down or redirect this violence, I am worried that in two or three years he will be big and strong enough to cause serious injuries.

He is also constantly thwacking his own head. This is his standard reaction to dissatisfaction, but it is more intense and frequent right now. When I can, I put my hands between his hands and his head to at least dampen the blows. But you can imagine how lovely this scene is, especially when it plays out in public.

I don't feel like I am the best mother to Leelo all of the time, but I made a real effort over the weekend to spend quality time with him, and he responded really well, most of the time. I have to keep this in perspective so as to not wallow in the negative. So, here are some of the good things we did:

We had some great snuggles on the couch, we listened to music that he liked, I gave him a lot of praise for all the things he did right (e.g., keeping his shoes on in the car; we're in another shoeless phase) and watched as the praise registered and his face lit up. Sometimes he would be so happy that he would hug me with his cheek next to mine, and not in the usual pressure-seeking way.

I also got him a book of dot-to-dot puzzles comprising the numbers 0 - 25, and have been making copies of the pages on the copier in my office so he can do them multiple times using extra-large crayons. I have been having him point to all the numbers in sequence, and then using his strength of knowing number sequences to ask him to draw lines from 0 - 1, 1 - 2, 2 - 3, etc. After the first couple of times he knew what to do, and seems to enjoy it. I hope this is an appropriate activity for him, as it is something portable that he and I can do together easily, and I'm hoping eventually he can do it independently. (He still shows some hand confusion and did several lines with his left hand before I noticed and made him switch.) He also did a good job signing his name on each picture when he finished.

In terms of independent work, Leelo is fully capable of navigating the Teletubbies website on his own and playing all the games. We are now teaching him how to navigate YouTube so he can watch the videos he likes in his room. I really need to teach him how to use Iz's Leapster so he can have something fun do do while we're out and about besides eat (he, like his mom, is best in class for rotundity. He's gained ten pounds in less than seven months, and was seventy-five pounds at his checkup two weeks ago).

Finally, minor to most people but exciting to me: I held up two jackets and asked him which one he wanted to wear. He looked from one to the other, and then said, "I want the orange," with very good pointing. That is huge.

So, a lot of good. And he had a fantastic IEP last week. He achieved 16 out of 19 goals, and will get to stay in the same fantastic classroom next year.

Anyhow. No conclusion. Lots of good, lots of bad. Lots of worry. Lots of helplessness. And I felt like a complete asshole for being so relieved when I put him on the bus this Monday morning.

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4.20.2008

It's in the Past

It's in the Past

(This is a finally filled-out fragment from a couple of weeks ago.)

Leelo is starting to answer questions about past actions and occurrences.

"Leelo, where did you go today?"
Leelo: "school"

"Leelo, who did you see at school today?"
Leelo: "Lana" (his aide this week; they rotate weekly)

"Leelo, how did you get home from school today? You rode..."
Leelo: "...the bus"

All really excellent! Of course, I only get one reply for each category. And this afternoon when asked who he saw at school today, he named his pediatrician. Still, progress!

Leelo is seeing his beloved friend Sage for speech therapy again. She reports that he is doing great identifying object functions beyond those he has mastered. This means if you were to say "toilet" he would say "poo-poo," or if you were to say, George Bush, he would say, "The man who will be remembered for destroying our country's economy, environment, and reputation."

And in chatting with Jennyalice today, Jake is talking recently, too.

Leelo's also being very insistent about what he wears. Two days ago he insisted on being dressed in green, head-to-toe, including underwear and his stimmy-straw (he has now been in love with straws for more than eighteen months; his ideal love is a clear boba straw with stripes.)

Despite Seymour's continued work stress and long hours and my wondering if I was stupid to try to do for-pay work while Jennyalice and I were also trying to for-real promotions for CISWY Seattle given my continuous demonstration that my day-to-day life without those distractions should really be sublet to someone more competent, this was a good week.

Leelo is going to school full time. That's M, T, Th, F 9:30 - 3:00, and Wed 9:30 - 12:00. He's a bit perturbed by the longer days, because he uses a visual schedule at school and he's got it memorized, and longer days mean a longer schedule, which means he's going to be doing more work. But as it will be predictable work in a structured environment, we should have happy happy Leelo by next week.

Mali is also going to school for longer days. M - F, 9 - 2. If I remain disheveled and my house remains disorganized, it won't be because of that "crazy schedule" excuse.

All three kids had ophthalmology appointments. All three have perfect vision. Iz is getting reading glasses to deal with eye strain, but her doctor is also going to have her do eye exercises. Most people who do the eye exercises properly lose the reading glasses in about a year.

Seymour's parents invited me and Iz to join them for a week in the Queen Charlotte Islands.

I got a real cell phone. Hello, 2008! I had fun explaining to Iz that the Ms. Pac Man on my phone is the exact replica of the great big arcade version that swallowed so many of my quarters in the '80s.

BSG Season Four premiere rocked! Although unfortunately Seymour was so tired from work that he begged off until the next day. I can no longer imagine a world without TiVo.

Mali is being a pain in the ass, but she is also becoming strangely conversational. "Mom, am I going to X's birthday party? Didn't you go to her party with all those ponies at school? "No mom, that was only ONE pony."

I did some real work lately. And finished it, even. Now I just need to get paid. More on that when the project debuts. Seymour connected me up with my first boss from Lalectronic Arts, who might also want me to do some real work. Although he asked me for a CV and writing sample ... cha? I haven't updated my CV in ten years, having gained employment through handshake dealies only during that time.

Probably the thing that made me the very happiest was discovering that, despite my neighbors' protests that they knew of no such thing, there is an entrance to the local open space preserve within walking distance. We checked it out with Ep and her family. It is not as large as the preserve we used to live next to, but it is good enough to get some exercise in, and the views of the Bay, specifically Byair Island, are glorious.

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Please Take Care of Yourselves

Please Take Care of Yourselves

Here are the rough notes from the Taking Care of Ourselves presentation hosted by SEPTAR (The Special Ed PTA of Redwood City, www.septar.org) on Thursday, April 10. Although geared specifically towards parents of special needs children, much of the material is appropriate for any overwhelmed parent.

TAKING CARE OF OURSELVES
Ilana Douglas, Licensed MFT (Marriage and Family Therapist)

Taking care of our needs and getting our needs met: in order for that to happen, we have to be able to see ourselves. Which is a very hard thing to do. Not just to see ourselves, but to ask others to see ourselves, too. That is also really hard to do. It's hard to have others pay attention and ask others to stop long enough to really see us as we are.

First thing she'd like us to do is say our names and tell us what we would do if we could wave a magic wand.
(Many, many different wishes expressed)

The wish for our children to be well is something we carry with ourselves all the time. It takes a lot of energy to be the one responsible for our fragile, vulnerable children. We feel like we have to be perfect because there's so little room for error. What will happen to our children if something happens to us? We are very, very vulnerable. We have ownership of "the entire list" and never get to stop to realize it. We go go go and never have time to look at ourselves, because everything on our undoable list is so important. And then when we miss one thing there's judgment inside of us, and from others.

How do we give ourselves a break from this mountain of items we'll never accomplish when the world is pushing down on us? What do we do with our resentment and anger, our exhaustion? How do we address it? We are so overwhelmed by the needs of everyone around us that we never give ourselves a break.

We try to be our children's user interface, and keep everything going for them.

Along with the needs that drive you are the values that motivate you. Values guide your life. It's easier to take a stand for something greater than yourself (Go on a march, make a donation, take care of your child) than to take care of your own need.

So how do we internally advocate to ourselves? What value relates to that advocacy? We know a lot about advocacy by advocating for our children. So how do we apply value to advocating for ourselves?

If you think of any organism in nature, a bug a tree, you'll realize that everything needs to be taken care of. A bug needs food. A tree needs water. They do not exist independently.

What value do we use to transcend our to-do list and take care of ourselves? We feel guilty if we take care of ourselves.

How do we advocate for respect from other people? How do we make time for ourselves in the course of a day to take a deep breath? the biggest obstacle to taking time for ourselves is: ourselves. Because we don't have a value that says "you are really special because you are doing that." Which is different than self-worth.

Our society doesn't value our efforts to take time for ourselves. Even if those ten minutes, five minutes to breathe can make all the difference. If we need that, we don't have the fortitude, we're not strong enough. Our kids deserve all our time, not us. We are not as good parents if we take time for ourselves, and want to be paid for what we do. Our culture thinks that mothers are here on this earth to be used. (One parent calls us "the human napkins.") There is incredible pressure applied on mothers, let alone the mothers of special needs children, let alone single mothers.

The biggest obstacle that she sees is taking time for ourselves every day, which is really what we need -- just fifteen minutes. Stop. breathe. Do whatever you need. Find that peace inside.

Say that you have two young children with special needs and you need a break. You say: I need to figure out what to do for myself. So you go online for advice. The advice you read says: “Go to yoga. Go get your nails done. Listen to music. Light a candle.” But this doesn't work for you. So what do you do?

She wants to take us through a process. Relaxation techniques can take less than five minutes. [Here are some similar exercises to those she demonstrated:
http://www.helpguide.org/mental/stress_relief_meditation_yoga_relaxation.htm]

What do we do if our children don't stop pestering us, ever? What can we do to get our kids to give us five minutes alone? Don't be afraid to bribe your kids for those five minutes! Don't be afraid to hide in the bathroom! It's very hard to fit this time in when we need it most.

It is important to develop friends who will support you in being able to identify and value this place of peace.

She would like to wrap up with something else:

"Yes and no are very important. But the most important phrase is ‘wait a minute.’ It's the spaces between the activities where life happens."

It is only from inner peace that we find the power to have a fulfilling life. This is separate and parallel to the grieving process.

What if our child doesn't have milestones? We have to divorce ourselves from the external judgment.

Remember that "What if" can be a way to escape from “What is.”

Ilana concluded with the following passage:

What You Should Know About My Child
(by Marie Bristol [possibly. My five-minute internet search to determine authorship was not fruitful])

Remember that he is, first of all, my child. Let me see him smiling in his sleep and let me think about how handsome he is and not about how delayed that smile was in coming.

Help me not lose sight of my son in the shadow of his limitations. I know that you care for my child and that you work hard with him. I need your expertise to help him become all that he is capable of being.

You need my help in understanding who he really is and in following through at home with things that are important.

Remember, though, that you send him home at night and have weekends off and paid vacations. Let me have the luxury of having a vacation, sometimes physically, sometimes just emotionally, for a day, a week, a month, without your judging me.

I will be there for him when you are long gone. I love my child with an intensity that you can only imagine.

If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.

Celebrate with me, rejoice in who he is and who he will become but forgive me if from time to time I shed a tear for who he might have been.

4.18.2008

Beyond the Sea

Beyond the Sea

Leelo's entire segregated K-1 moderate-to-severe behavioral autism class is going to the beach today. His teacher assured me that he will have the same vigilant 1:1 supervision on this field trip that he does in class. I assured her that he will make a break for the water any chance he gets, and to make sure that he has an aide who can haul ass if need be.

Can't wait to hear how it goes.

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Update: Total success! Leelo's teacher wrote in his communication log that my son had a good time at the beach. He liked walking on the sand. He enjoyed splashing in the water. He was very cooperative and didn't hit anyone. He even was able to wait quietly for his turn to use a public bathroom afterwards, and had no toilet accidents for the first school day in over two weeks. I hope this bodes well for the weekend. Go Leelo!

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4.17.2008

Battlestar Bwahaha

Battlestar Bwahaha

4.14.2008

Can I Sit With You? Seattle in Less Than Two Weeks

Can I Sit With You? Seattle in Less Than Two Weeks

Seriously, everyone: the show is in less than two weeks! If you're thinking of going, please buy your tickets now as space is limited. And please also spam your friends about the event.

http://www.brownpapertickets.com/event/30612

Also very exciting news: Sarah Dopp is going to be the final reader at the show. Now you really shouldn't be able to resist.

Finally, a new story is up on Can I Sit With You. It is about bullying, is titled Dodging Bullet, and gave me the shivers.

4.12.2008

Absence Makes the Heart Skip Several Beats

Leelo had a petit mal seizure-type episode right in front of me and his speech therapist Sage. I yelled his name and snapped my fingers in front of his eyes for several beats, and he just stared straight ahead at nothing until suddenly he was back as though the episode never happened.

Chatted with Dr. Sheyenne, his neurologist. Leelo gets another EEG! YEAH!

Leelo has also been having pee accidents all week. I took him to the doctor, who said he had no bladder infection though he might have constipation. Then again, both Supervisor M and I think Leelo might be having headaches/migraines. Leelo hasn't had wet pants for months. Seymour and I suspect that the accidents may have behavioral bases as well. We are upping the reinforcements and party potty atmosphere for successes.

Dr. Sheyenne thinks the absence episode and headaches might be related. We may see a pattern on the EEG that can tell us where the symptoms are coming from. Or we might get another "Oh, yeah, that's a fairly typical pattern for seizures *or* autism. Do you want some meds?" Sigh.

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In other, less exciting news, I am sad about the way I and several other people are being treated by the moderator of a special needs parenting e-group. Said moderator is a rigid thinker who has created and vigorously enforces a set of rules for posting content on the two group lists. People who break the rules, innocently or with the very best intentions (e.g., making sure that announcements about community support events reach as many people as possible) get very rudely reprimanded and punished (warned, moderated, or kicked out). No matter that the people posting messages are actively providing real help and support, which is the entire reason the group exists.

I do not like being spoken to like a naughty child.

I do not like being told that rules created and enforced by one self-appointed gatekeeper are more important than the welfare of several hundred vulnerable, stressed, isolated parents.

I do not like being accused of grubbing for publicity and fomenting a conspiracy by telling people that the Special Ed PTA to which I dedicate my very precious free time provides services and babysitting for them, for free, even if they don't live in our school district.

I do think that there should be special itchy underwear for people who cut off access to information because Ur Doing it Wrong.

I can't think of any way to resolve the situation, which makes me crazy.

I don't want to disrupt the community; many of the members are tiny tiny kittens holding onto the tiniest tiniest branches. Very fragile, very much needing the support the community provides. The very saddest part is that the moderator is one of those kittens, too.

4.08.2008

Our Apples, Our Trees

Our Apples, Our Trees

Sometimes you meet a child with autism, and you think how different they are from your child with autism. And then you meet or talk with that other child's parent, and you think oh honey, your child's autism, it may be a mystery to you, but it is not so much a mystery to me and here is a mirror for you and by the way, it's okay to stim like that if it makes you feel better.

My friends and I, we see so much of ourselves reflected in our children. They are quirky. We are quirky. How wonderful that we all have each other, that we have our community with which to celebrate and commiserate about all those quirks. How desperately we need each other, online and IRL.

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Squid News

Squid News

This video report on the Humboldt squid now percolates through my nightmares. Beaks! Huge parrot-like beaks!

I told my mom about the Humboldt squid invasion. She proceeded to tell me that she'd heard some of them even jump onto boats and attack people.

Me: "Mom, do you remember when I was little and I used to be too scared to go to bed because I thought giant squids would get me?"

Mom: "I thought you were afraid of giant earwigs?"

Me: "Yes, and giant squid, too. And the way I feel hasn't really changed."

Mom: "Oh. Well, tell Seymour that they did a really great job on that report."

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In other squid news, check out this sexy, retro-2004 link: www.squidalicious.com

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4.07.2008

Good Manners

Good Manners

Leelo and Mali and I were shopping for groceries at The Hole. I was at the counter refilling the caffeine tank while Mali squalled about something (probably "I am NOT contrarious!" or "I WISH I had a cookie right now") and didn't notice Leelo slip off to the free tiny cups of water cooler.

After a beat I realized my son was not beside me, and turned around to see him getting a cup of water from a Hole worker. "He asked me for water so nicely!" she said. "Your son is so polite!"

Oh yes, he can be. He can be. Sweet and clever and handsome, too. This has been a particularly good week for Leelo's language, self-control, and affection. I am proud, but more importantly, I can tell that he is proud, too.

I was telling Leelo's fabulous new QA supervisor, EAP, about the water incident. She laughed, and told me that she can't believe the shit supposedly typical kids get away with in public. She said that none of the kids she works with would *ever* attempt the hijinks of their typical peers. So there's something to be said for hundreds and hundreds of hours of one-on-one social skills tutoring.

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4.06.2008

Call for Submissions: My Baby Rides the Short Bus

Call for Submissions: My Baby Rides the Short Bus

I am guessing that some of you have a few stories you could share:

http://www.shortbusbook.blogspot.com/

About this project:

As parents of differently-abled/special needs children we are often put on pedestals. People wonder in awe about how we cope, or tell us platitudes about how we have landed in a different but wonderful country, and we need to dream new dreams for our special angel children. But when we’re our in public, our ‘special angel children’ are most often stared at and treated like second class citizens. Our children are inconvenient, awkward, and difficult and it’s true that coping challenges us. But those who wonder how we do it are really just highlighting for themselves (and us) that they will never have to know. The truth is that our kids aren’t angels, they’re people with big challenges. And their challenges make our lives as parents incredibly complicated, messy, and sometimes heartbreaking, no matter how much we love them. As parents who are already marginalized by politics, sexual orientation, gender, race/ethnicity, parenting philosophy, our own disabilities, economic status, blue hair and piercings, or something else that makes us unlike the CNN-camera friendly special-needs family America knows and adores, it can be harder to find support among other parents or be taken seriously by the teachers, therapists, and other professionals we often have to rely on to get the services our kids need.

My Baby Rides the Short Bus will be an antidote to the saccharine laced anthologies that exist for special needs parents. It will give punk, alternative, and marginalized parents a place to write about their realities. Readers who have special needs kids themselves will feel like they’ve found honest voices and community, while others will have a better understanding, and hopefully respect, for us and our struggle.
I am not associated with this project in any way, but think it kicks ass.

(Thanks go to Badger for the link)

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4.04.2008

This Is Not What Facebook Is For

This Is Not What Facebook Is For

My aunt just asked to be my friend on Facebook. I am thinking NO. A big NO to my mom's sister, much as I adore her. Because she and my mom are (as my uncle puts it) really just one brain with two mouths. I know it's probably very thirteen of me, but (cue petulance) I don't *want* to.

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4.02.2008

Sarah Dopp on Can I Sit With You?

Sarah Dopp on Can I Sit With You?

Our contest for Can I Sit With You? Seattle has opened, with a formidable entry: Sarah Dopp. Here's her story:

http://canisitwithyou.wordpress.com/2008/03/31/will-you-go-out-with-me/

While I know that going up against Sarah is not an undertaking for the weak-willed, we could use some more entries. I know that there must be rivers of Seattle-based writers with angsty school yard stories to tell, but I don't know how to find them.

So, I'm asking for help. If you, dear readers, could promote the contest and event on your blog, or if you could spam writey Seattle friends and associates about the contest/gig/show, I would be so very grateful, and will thank you personally right here on this page.

Here is the URL:

http://canisitwithyou.wordpress.com/2008/03/26/can-you-read-with-us-in-seattle/

Also, while thanks to Jennyalice we do have some online listings going on, this promotional endeavor thing is a bit new to us. I was going to post notices on upcoming.org and socializr.com as well, but would welcome recommendations for other ways to let people know about our amazing show and contest.

With thanks,

Squid

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