10.31.2008

Halloween at Cal Academy

The girls were out of school today but Leelo was not, so we dressed our boy in his very best pajama-like and non-sensory-triggering Obi Wan Kenobi costume, dropped him off at school, and spent our Halloween daytime getting our minds blown at the new Cal Academy. We were supposed to go with Jennyalice, but both of our phones wigged out. I saw her car on the way out and left a straw wedged in her the driver's side door handle, so she'd know we'd been there. (Straws are Leelo's calling card.)

Iz and her friend Emma geeked out intensely. They especially liked the new planetarium, the Foucault's pendulum, and the interactive everything.

Mali liked the Bugs! movie, cracked up the entire audience when the docent told us to enjoy ourselves by announcing to everyone, "We will!", and even wore her 3D glasses part of the time.

I enjoyed hearing a voice I recognized, turning around, and realizing I was standing next to the man who inspired the Halloween costumes of thousands of disaffected teens, Malcolm McDowell. I didn't approach or even acknowledge him as my Halloween costume is a TNG alternate future communicator badge (I am a Dept. of Temporal Investigations agent doing undercover research on 21st century Terrans), and I suspect that after his role in Generations he has grown a bit leery of anything Trek-related.

The place was crowded, and I wanted to scope it out before bringing Leelo there, but I still missed my son. Especially when a boy came up and moved my hand off a rail without so much as looking me in the eye. His father apologized, but I just smiled and laughed and said, "No problem." I didn't tell him that I had one of those beautiful boys myself, that I was missing Leelo anyhow and that seeing his son made my heart ache, and that I totally understood. Sometimes I like to pretend that I'm merely a nice person, instead of one who has been conscripted into empathy.

Happy Halloween, everyone.

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10.27.2008

New Can I Sit With You? Story

Not all high school deaths are treated equally. New Can I Sit With You? story, Double Standard, by E. Hansen: http://www.canisitwithyou.org/?p=237

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10.23.2008

Why Don't We Want to Recover Leelo?

What I say to well-meaning family and friends who want to know if we've thought about "recovering" Leelo just like Jenny McCarthy "recovered" her son:

I personally don't mind reading about autistic children who are doing well, as long I'm not told that what that family did to help their child is a cure! that will help *all* autistic children, because that's just not true.

We did try a lot of the biomedical approaches, but they weren't helpful for us, so we shifted our focus to therapies like ABA, speech, and occupational therapy that were actually helping Leelo gain skills.

Most of my friends in the autism community now think that "autism" is a banner term for several not-yet-differentiated conditions and syndromes. My son participated in a detailed study at the MIND Institute regarding autism and regression that was based on home videotapes of his development. No regression was evident. So, he's just not like [Jenny McCarthy's son]. The fact that they have the same label just means that we need more research and better diagnostics.

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No on Prop 8 Demonstration!

Zelly's No on Prop 8 Flyer
Iz's No on Prop 8! Flyer (a spontaneous effort, btw)

What: *No on 8 Demonstration*
When: *Friday, October 24, from 4:30 to 7:00 pm*
Where: Redwood City, corners of *El Camino Real & Jefferson*
Who: All supporters of No on 8
How: Please bring your own signage; this is being organized by citizens
Why: To put a public face on the diversity of supporters against Prop 8; to demonstrate the importance of protecting equal rights for all Californians.

***UPDATE*** from the No on Prop 8 Campaign Folks:

Because this has also been a site of Yes on 8 supporters, it is imperative to demonstrate in a manner that is peaceful and nonconfrontational.

Because research shows that consistent messaging creates positive impact of the message, the campaign is requesting that NO ONE SPEAK TO THE MEDIA if they arrive.
Please direct all requests for comments to Allie Bay 916-284-9187 or 916-554-7683. Please bring this information with you in case you need it.

Again, to achieve consistent messaging, yard signs and/or previously printed signs from the No on 8 campaign are best. If these are unavailable and you bring handmade signs, please use the following key words: UNFAIR, WRONG, UNNECESSARY, and NO ON 8.


Thanks for your support! I don't know that I'll be able to go as Mali and Leelo aren't much for prolonged standing on street corners, but wanted to spread the word.

Please also check out these videos clarifying why Prop 8 is unfair and an affront to civil rights. Forward them to your friends, and family:









And what the hell, as long as we've got the nose-tweaking videos going on: [note: includes violence and profanity]

See more funny videos at Funny or Die

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10.22.2008

Can I Sit With You, Too? Cover Art by Lea Hernandez

Can I Sit With You, Too? Cover Art by Lea Hernandez

This art will grace the cover of the second Can I Sit With You? book, which will be published in mid-November 2008.

Here are the notes as to how Lea Hernandez created this incredibly detailed sculptured doll tableaux.

What you need to know is that Lea, also a mother of children with special needs, donated her time, materials, and this image to Can I Sit With You?, even though she herself is asking for commissions so that she can resuscitate her dead car.

Thank, you, Lea. You and your art are amazing, and we are grateful for your contribution to this project.

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10.21.2008

When Even Moderate Opinions Aren't Tolerated

Oh for fuck's sake. Meanies! *snicker*

http://www.ageofautism.com/2008/10/stop-jenny.html

To clarify my own, rather moderate (I thought) position:

  • Jenny McCarthy needs to stop claiming that she speaks for all autism families. She speaks for herself and her son only.
  • Talking about autism only in terms of a "cure" is disrespectful and reckless. What about parents whose kids don't get "cured" like Jenny promised they would? How do you think they're going to react?
  • I am not against biomed, as it is generally not harmful. It didn't help my son, so we stopped everything except some of the dietary supplements. But it is incredibly time-consuming, especially for already-stressed families. I think that if parents have to make a choice, they should go with proven therapies like ABA, speech, and OT.
Love your children as they are, right in front of you. Help them gain skills. Research research research, and talk talk talk to other families with a variety of viewpoints. Keep a record of your and your child's efforts. Consider that your perspective on what works (and doesn't) may change over time.

Trust yourself. And if you find yourself making decisions about your child's welfare out of fear or anger, take a step back and reconsider.

P.S. It has been suggested that I go on the site and state my case. I don't see the point. I suspect that arguing with Jenny's Warriors would be like arguing with the stoned cashier in Sebastopol who wouldn't let me give $5.05 instead of $5.00 for a $4.05 purchase. She understood that I wanted a dollar back instead of 95 cents, but told me I would be paying too much money and then the till would be off. Our minds were not meeting. That, like the link cited above, is a nod-and-move-on encounter.

*update*

My dear friend Liz Ditz -- with whom I have a relationship of mutual respect even though we don't always agree on vaccination issues -- informed me that Age of Autism comments are heavily moderated so as to ensure that the clucking and squawking about dissenters sticks to assumptions, screeching, bashings, and outings. Well wishers, please don't be quixotic. I'd hate for you to waste your valuable time on people who will not tolerate dialogue.

In a few years, the majority of them will realize that their kids need more than AoA & Ms. McCarthy can give them. I'll still be here, offering my hand, and listening.

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10.20.2008

Our Babies Ride the Short Bus*

Our Babies Ride the Short Bus
Sculpture by Patrick Amiot & Brigitte Laurent. Note the "No on Prop 8" sign held by the driver.

My friends and I spent the entirety of yesterday in the Sebastopol area, reveling in plentiful art, artists, conversation, and delicious foods. As we hopped from studio to studio along the ArTrails route, we spied this sculpture of the bus that takes our children to school each day. A picture had to be taken. (We did ask permission.)

As we posed, a man walked up and gave us good-natured grief about taking pictures in front of his house. "But we asked!" we chorused. Turns out this gentleman actually drives this bus -- is the actual driver in the sculpture. He drives kids just like ours -- the elementary school-aged harness kids. He got us and we got him and our day was that much the better for it -- and we hadn't yet arrived at the restaurant with the kir royales!

Love my friends, love our husbands who have no problem going solo with the kids so that we friends could have a full day of fun -- together. Glad I could provide a timely birthday as justification. Just wish that Sage could have made it work, too.

*My Baby Rides the Short Bus is a book about parenting special needs kids without pity and with extra passion. It comes out in a few months and features stories by two of the four women in this photo.

When The Bone Breaks

Mali fractured her collarbone one week ago today. She has a buckle fracture, which means her clavicle is bent, and only busted partway through.

She is fine. It's her mom who is still reeling. And not for the reasons you may think.

We were sitting in a local cafe with Iz and her friend Jorge, having a bit of cake to celebrate Jorge's birthday, when Mali slipped backwards off her chair, went bottoms-up, and landed with a crash on her head, neck, and shoulder.

At first, I figured she was scared but probably fine. But she didn't stop crying, not inside after two minutes, and not outside after five. Not even with snuggling, not even with undivided attention. Something was wrong.

I carried her back inside the cafe, and told the two big kids that they needed to pack up their cake because Mali was hurt and we needed to leave immediately. My mind raced as I drove home. What if Mali had dislocated her shoulder? What if she'd given herself a concussion? Time for a medical consult with the advice nurse.

But as I picked up the phone, I suddenly remembered: It was 3:30. Leelo's bus was coming to our house at 4:00. And Leelo's Therapist R, who would normally meet him at the bus as she does two days a week so she can work with him until 6:00, was on vacation for two weeks.

Crap crap crap. I had to figure out what to do with Leelo, first, before I called the nurse, before the nurse set me up with an appointment or told me to go to Urgent Care. Mali needed all of my attention. That by itself would piss Leelo off, and make him act out. But her crying and sadness would aggravate him even more. I could not safely manage both her and Leelo in a waiting room or doctor's office.

But who could take Leelo? Most of my friends cannot drop everything and race over, as they are crazy-busy people with herds of their own children. Many of them are going through rocky periods themselves. And even though a few friends might have been free, I didn't feel comfortable asking for Leelo-minding from anyone who hasn't spent a *lot* of time with him and his unpredictability during the past few months. One unanticipated injury per day is my limit.

I realized that really, I only had two safe choices: Sage and Jennyalice. And Jennyalice's son Jake was on school break, so she was already maxed. Her life was already so maxed. As was the sandwiched Sage's. No. I could not call either of them.

So I called Seymour. I told him what had happened, and asked if he could come home early. He agreed that Mali needed to be looked at and said that yes, of course, he could come home right how, but, um -- he was working on a really critical media publishing deadline. Is there any way I could ask someone else to help?

He has never before hesitated to come home early upon request, so I knew his deadline was a serious one. I told him not to worry and hung up.

I looked in the car seat behind me and saw that Mali had fallen asleep. She never falls asleep in the car during the day. Oh, god, I thought, she fell on her head! She passed out! She has a concussion! Maybe her brain is bleeeeeding!

I started to sniffle a bit. "Mommy?" said Iz, from the way-back seat, "You aren't going to cry, are you? It makes me really uncomfortable when adults cry."

"No, no," I reassured her, even though my voice was cracking.

I took a deep breath and decided that calling Sage, whose two children are older and need slightly less minding than Jennyalice's, was my only choice. Imposing upon my completely stressed-out friend was my only option. My son is so difficult to be around that, in an emergency, even he could count his options.

That is when I started to cry. We have so many friends, so many wonderful friends. But when it comes to Leelo, we can feel so alone. Not because people wouldn't try, wouldn't offer, but because Leelo's needs are too severe, too dangerous, too immediate. There are only a handful of people with whom I can leave him and feel safe, knowing that no one is going to get hurt. Or who, if they do get hurt, will come back, who won't be shocked or disgusted or offended, who can look past Leelo's behavior and hold onto his sweetness, silliness, and beauty. And still love him.

Sage said that no problem, she would be over right away. Of course! I cried anew, this time out of gratitude.

By this time we were parked in the driveway. I called the advice nurse. She told me not to worry too much about a concussion, as children usually need to fall from twice their height, or be accelerating, to have a concussion. But she did think Mali needed to go to Urgent Care.

I called Jorge's mom and asked if she would mind picking him up early. She said it was no problem.

Sage arrived. I blubbered my thanks. Iz and Jorge played Rock Band. Mali woke up and cried some more. I drove her back down our hill, passing Leelo's bus on the way.

Jennyalice called as I drove to Urgent Care, asking me what I planned to do about dinner. She was involved, much as I'd tried to keep her out of my day's web of complications, because our group's close-knit interdependence means that Jennyalice is one of the few people whom Sage trusts to pick up her son AJ. Which is the only way Sage was able to come watch Leelo.

Jennyalice offered to take my kids some Burger King. I said that sounded just great, and told her what they would eat. And thanked her. And sniffled a bit more, feeling even more lucky to have such thoughtful people in my life.

Mali and I had a routine visit to Urgent Care. It was early, wait times were brief, the x-ray machine was scary but bearable, and the pediatrician on duty was all business. We were out of there with a clavicle buckle fracture diagnosis and Mali's new sling in less than an hour.

Mali and I arrived home to a happy house that smelled of fresh-baked cornbread. Everyone had apparently had a great time while we were at the clinic. Jorge's mom Sandia had stayed for a while and helped supervise a lot of swimming and silliness. Sage, who is Leelo's speech therapist, kept him plentifully busy, and somehow found time to make us minestrone and the aforementioned corn bread. Jennyalice's Burger King delivery was met with a lot of enthusiasm, especially from Leelo, who knows that the Burger King logo means red straws, and who went through increasingly complicated verbal gymnastics in trying to coerce some of those precious straws from Jennyalice.

Please go by Sage's and Jennyalice's sites, and tell them how great they are.

-----

Mali has been mostly fine. As I've been telling most well-wishers, if your kid has to get a break in something, a clavicle is a good choice. Mali has to be careful not to bump her collarbone before it heals, or it might break all the way through. It doesn't hurt unless it's jostled or stretched, so she wears a sling mostly to remind other people that she's not supposed to run, jump, or climb for two weeks. She's pissed at being excluded from the playground time at school, so I've been picking her up after lunch every day. I don't really mind the extra time with her, even though I am under deadline. Mali is a delight and a kick, plus she can entertain herself quite ably.

The only ongoing stress is, really, her brother. He likes to hit her. He likes to push her. Vigilance is even more critical than our previous take on critical. Which he seems to sense, and which has made him increasingly crafty about his ambush methods, like unlocking both back doors when I'm not watching, so that if I tell him to go outside and play, he can sneak back in the other door and attack Mali. A few days ago his unrelenting assaults literally drove me to drink -- thank heavens it was babysitting night -- as once our two angels from on high descended to take over my children, it took two strong mixed drinks to make me stop shaking with anxiety.

A fracture is a rite of passage in childhood. It's stressful at the time, and makes for some inconvenience during the healing period, but it not usually a matter of ongoing stress. Unless you have a brother like Leelo. Our little exponent. Add him to any scenario and the intensity increases, the complexity increases by several factors. It's not his fault. But I just wish, sometimes, that everything wasn't so hard.

And you know what? Mali's injury is minor. The amount of time for which I needed help with Leelo was very brief. The fact that I have friends who can come help with Leelo in a crisis is miraculous. If you felt any vicarious anguish in reading my story, please know that, compared to many of the people I know and know of -- and even more I don't -- I am one of the lucky ones.

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10.17.2008

The Church of Behavioralist Techniques

Seymour and I had a meeting with Leelo's Supervisor E tonight, to discuss our family's ongoing behavioral efforts to help Leelo manage his aggression. (Supervisor E has taken over the greatly-reduced home component of Leelo's learning, whereas Supervisor M focuses on working with Leelo's curriculum and classroom work, and ensuring classroom-to-home consistency.)

I enjoy our meetings with Supervisor E. It is like going to church in that our goals, our reasons, and our knowledge about Leelo and his behavior are clarified and reinforced, and we take in more of the True Path, the one that will continue to show our son The Way.

Here is what we discussed tonight:

Overall the tone of our interactions with Leelo needs to be very clear. Positive for positive behavior, neutral/unengaged for undesired behavior. He needs to learn to get our attention by behaving well, not badly.

  • If he is behaving in desired manner, one we want to reinforce and have him repeat, we give him constant positive verbal reinforcement.
  • The moment he acts out, our tone becomes flat and business-like, with interactions kept as brief as possible.
We want to prevent episodes rather than impose discipline. Prevention is much less messy.

PREVENTING EPISODES
  • Use visual supports.
  • Activity schedules help Leelo organize and anticipate. They also facilitate more independence, as he can scan and work through much of his schedules without external input or prompting.
  • Individual icons are good for easing transitions (e.g., icons used in car: "Put on Seatbelt," etc.)
  • Lots and lots of non-contingent positive praise/reinforcement (e.g., While in car, every minute or so say something like, "Leelo, you are doing a good job keeping shoes on!")
  • Warn Leelo about what is happening next.
  • Let Leelo know when we will be turning attention away from him.
RESPONSE TO AGGRESSIVE EPISODES
  • Evade. Step back, get out of the way.
  • Say "STOP!" (This is a specific direction that tells him what to do, as opposed to non-specific "NO!")
  • Give a single, one-step direction, e.g., "sit down."
  • We do not want Leelo to learn that attacking gives him big screeching reactions from his parents. He needs to receive NO reinforcement for such behavior.
  • Supervisor E will be back in two weeks, and in the interim will be thinking about a small reinforcement system that we can use for Mali, to get her to stop reacting so extremely when Leelo targets her. Her fear is legitimate and her shrieking understandable, but if we can get her to run away and not scream, Leelo will lose his reinforcement and she will be safer.
  • In Supervisor E's experience, punishment rarely works with kids like Leelo. They don't know why you are doing it, and it makes them feel like they are being attacked for no reason.
BEDTIME ROUTINE
  • Maintain same lovely, happy, snuggly bedtime routine.
  • Once our boy is tucked in bed, nice mommy and daddy are all done and all-business mommy and daddy emerge.
  • Any getting out of bed, even for legitimate toilet needs, is met with only the bare minimum required interaction, and no eye contact.
  • Same phrase, "back in bed," is used consistently and with no affect.
Your kid doesn't have to have autism to use a lot of these techniques, by the way. Take away the icons and schedule and the aggressive attacks, and you have a plan for dealing with any kid whose brattiness has a behavioral component.

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10.16.2008

Rules for Trolls

If you need to write about a sensitive topic anonymously, I understand, and will allow. But anonymous trolls' comments will henceforth be deleted.

Personal attacks don't bother me, I can take it, and am rather amused when someone passes judgment based on the .05% of my life that appears on this page. But I can't help worrying that nasty comments will bounce off me and hit a fragile or vulnerable reader, instead.

Think about what Mary Oliver wrote (in a book given by the luminous Jennifer):
Mostly, I want to be kind
And nobody, of course, is kind
or mean,
for a simple reason

And nobody gets out of it, having to
swim through the fires to stay in
this world.
You might be an asshole for a complicated knot of very good reasons. I understand that, too. But I won't let my comments be your shield. As I told Iz, when she yelled "idiots!" at a house that had a "Yes on Prop 8" sign on its lawn, "You should be yelling, 'Try Tolerance.'" Try being helpful. Being bitter and mean helps no one, and ultimately corrodes your own soul.

And ask for help, if you need it. That's the main reason this site is here.

10.13.2008

Let Me Tell You About My Beautiful Boy

IMG_3095.JPG
Leelo at Camp Coastaldweller

Let me tell you how wonderful he is, how funny.

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He likes to pretend to fly on a broom, because that's what Kiki the Witch does.

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(I hope he doesn't try jumping off of anything higher than our couch.)

IMG_3071.JPG

He can sit through an entire preschooler pony birthday party doing activities, as long as one of us is with him to keep the verbal prompts coming.

Visual Icons in the Car

He has adjusted to our use of icons and a visual schedule throughout the house and in the car, though he was initially quite pissed off that I was using them because, while he knows he can "argue" with and disobey me, he can't argue with icons. They are simply The Law.

He has been asking to sleep with me at night. When I say no, he turns to his sister and says, "Sleep with Izzy?" who is more than happy to comply for the few minutes until he gets irritated and kicks her out of bed.

He was so thrilled that I found his old CD of classic kids' songs that he sat in front of the computer for twenty minutes, listening to the songs and clapping out their rhythm.

He has become a Crocs convert. He likes his Crocs so much that he wears them inside the house, willingly. He can put them back on in seconds, without his hands.

He can pick up anything with his feet, while strapped into his carseat. Anything. It's really amusing. Less so when the objects are french fries he has dropped, but his prehensile moves still rule.

He has been doing a really great job of running for the toilet when he needs to go, and holding his business overnight. I am allowing myself to suppose that he might outgrow his night-time pullups within a couple of years.

He occasionally tries to imitate the Dancey Dances on Yo Gabba Gabba.

He maintains his cool in his classroom, even though the majority of his classmates are screamers. I attribute this to his lengthy visual schedule and fantastic teacher/aides.

He asks for lots of kisses and gives lots of hugs. And lately he has decided that snuggling with me on the couch is part of his TV-watching routine. Love it.

--------

Let me tell you how exhausting he is, how worrisome.

His social worker came to visit on Wednesday, to see if we really did need respite hours and if the regional center would pay for camp. I think she was going to give us what we asked for anyhow, but after Leelo ambushed her twice, and hit her, hard, she signed all the papers very quickly. (She was unfazed and has likely seen worse, but I am still mortified.)

He ran up and hit a random lady in the grocery story on Saturday. She, also, seemed unfazed but I almost lost it. If my brother hadn't been there to whisk Leelo out of the store and into the car, I would have crumpled. Even so I was emotionally woozy for the rest of the day.

He seems to be phasing out of squeezing and pinching and scratching. My arms no longer look like I have scabies, track marks, or an abusive boyfriend.

He is still targeting his baby sister any chance he gets, and finds it amusing. She now screams any time he comes into the same room. Which he loves. I think this is the non-conversational autistic brother's version of bullying, of torturing his siblings, but it is not safe. The constant vigilance is very very wearing. We are spending far too much time in the car (with the girls' seats pushed as far forward from Leelo's as possible), as when I max out that is the only way I can watch them all safely.

He now thinks it's funny to climb the bannister and along the outside rails of our stairs/upstairs. He hasn't yet been fast enough to hang over the area where there's a twelve-foot drop. Again, constant vigilance.

He has decided that he likes to sleep *inside* his duvet cover, with his comforter. Since he doesn't quite get buttons, he just ripped off all the buttons and/or ripped open the button holes, for access.

He still can't tolerate a drop of liquid on his clothes. A few days ago, while I was driving him and Mali back from a drive-through dinner as we needed something to do while Iz was at soccer practice and I did not have the energy to risk taking the two littler ones on an excursion, he managed to strip himself completely -- jacket, shirt, pants, and underwear -- while strapped into a five-point harness carseat.

His bus drivers call him "Houdini." I have asked the school aides to make sure that his harness is on as tightly as possible. I don't know how many write-ups a kid can get before they kick him off the bus, but Leelo's already had three.

He seems to enjoy yesterday's tour of Camp Coastaldweller, the camp he'll be going to in November. Except that there's a pool in the middle of the camp. A very visible chainlink-fenced pool. Which Leelo really wanted to swim in, and kept asking about. I didn't see anyone else's kids headbutting their parents throughout the orientation, but the camp staff assured me that they've seen everything, can deal with anything.

He was approved for a 150-minute, two-part evaluation for meds and aggression by the behavioral psychologist at our local medical group. That will happen in mid-November. I wish we never even had to consider this. I am grateful to everyone who has sent me information and stories of their own experiences. I have to believe what a friend who went to the recent Morgan Center conference told me, which is that there were autistic adults there who testified that, until they started taking medication, they couldn't even begin to process the world around them. All they could do was lash out and react against it. Meds showed them the way.

-----

I am glad that Leelo continues to bring so much joy to our family. But there is a lot of terror, anxiety, and exhaustion as well. We can't keep going like this for much longer. At least we have some plans.

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10.08.2008

Quirky Is a Lifestyle

The second month of school finds us settling into reassuringly predictable routines. On Wednesdays, Leo gets retrieved by me and my minivan instead of by short bus, so that he can go to speech therapy with Sage in her new office. On Thursdays, the girls and I get a sweet treat at the patisserie Mali christened "Plapamoose" after picking up Iz from early release day, so that my eldest's blood sugar level will not complicate the following piano lesson. On Mondays, I pick up Mali and then Iz, and we have just enough time to go grocery shopping before we come home to meet Leelo's bus.

And grocery shopping is what we were doing on a recent afternoon when the girls and I ran across a grown-up member of our tribe and his adult companion. Mother and son? Likely, but assumptions tend to bite back. He was definitely one of ours, and at several inches over six feet was not able to fly under the radar like Leelo occasionally can. Unlike Public Outing Leelo of late, he was calm and seemed amiable, though his companion was holding his hand every time I spied them.

I couldn't stop staring at the two of them. It took all of my willpower not to run after them when they exited the store.

Why? I wanted to thank his companion. I wanted to tell her how grateful I was that she brought him with her instead of leaving him at home, and though it may not have been her choice, she forced a confrontation on people who prefer to pretend our kids don't exist. I wanted to tell her that, though her excursion may not have been an easy one, she was doing good and helping all of our children.

Thank you, you two, whomever you were. I hope you receive all the love and support you deserve.

----

I have no intention of leaving Leelo home as long as the chance of a successful outing is 75% or higher. He can chew on all the straws he wants, make funny noises, and behave however he likes as long as he is not inconveniencing or endangering me or anyone else. Even so, I get tired of occasional Pity Stares and often wish Leelo had some way to deflect them.

Now he does.

Our own Signora (Captain) Blog has come up with a great design for all of us quirky types to sport, so wear your quirky pride with a t-shirt or other gear from the SEPTAR CafePress shop!


Quirky Is a Lifestyle

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10.06.2008

New Can I Sit With You? Story

Today's Can I Sit With You? story is Pick Your Battles, by Madeline McEwen-Asker (A familiar name to many of you).

Go, forthwith, and enjoy!

---

I know there's been precious little information coming from these parts. It's Can I Sit With You? book publishing season (check out the amazing list of our contributors), SEPTAR season, Seymour is on his third trip in less than two weeks with another coming up this weekend, and my day-to-day life with both family and community is far from dull.

Though it will be amusing to come back and read about this period and think, "Hmm, not much going on then," when in fact I'm riding several storms, bareback. No time to write or do much of anything except hang on tight.

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10.02.2008

Leelo Is Going to Camp!

Leelo got in! He will be a 1:1 camper at a local camp for a mid-November weekend. I am so excited for my son, for his opportunity to try being an independent boy during a weekend completely dedicated to fun.

I am not going to tell you the name of the camp Leelo is going to, however, because while the camp staff is kind and altruistic, the signup process is quite horrible, and until it is made better or more 1:1 spots are created it is probably best to not publicize this particular camp.

Our friend Beth made a post-work journey to the camp offices yesterday evening, to write the names of Jennyalice, DoubleTrouble, me, and herself on a list that had been posted on the camp office door. By the time Beth arrived at 6:30 PM, we could only get #'s 15 - 18 on that list.

We arrived at the offices at 3:30 AM, the office doors opened at 8 AM, they called us in by our list numbers, and our families' kids got *the very last* 1:1 spots for the entire year. The twenty or so parents after us, who had also been waiting since the wee hours, who had also been hoping for one of those spots, were vocally and loudly not pleased. Nor would I be.

It was an emotional and draining process, one we'll be doing again in the new year when it's time to sign up for summer camp. But I really enjoyed getting to spend time with my girlfriends, and meeting some really amazing people with really amazing stories while we waited around. And Leelo is going to camp. His friends are going to camp.

Another happy day!

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10.01.2008

Jenny McCarthy: Stop Being an Ass

Jenny McCarthy is a loudmouthed ass, but we all knew that before she had a kid with autism (oh, wait, her kid is recovered, right?). I had hope that she, and so many others who have usurped roles supposed to be filled with role models, would learn that it pisses people off and doesn't help your cause when you throw expletive-laden mud at your enemies, and that just because someone else calls you a name doesn't mean you have to call them one, too. But, le sigh.

It makes my eyeballs explode when Jenny McCarthy is cited as an autism advocate. It pisses me off that her son and Leelo have the same diagnosis, when they are so obviously very different children with dramatically different needs. She says that Amanda Peet hasn't walked in her shoes, that she doesn't get what it's like to have a kid with autism. I would point out that my friends and I have walked in Jenny McCarthy's shoes much longer and with less "success" than she has. And few of us still believe that vaccines caused our kids to be who they are. She does not speak for us, do you hear me? Don't ever think she does.

I especially don't give a shit about anyone who can only talk about autism in terms of recovery, because that is disrespectful and just not realistic for most families with autism. Are we failures because Leelo is still autistic? I hardly think so. Newly diagnosed families need to put their energies into approaches and therapies that will help their children gain real skills (modified ABA, speech therapy, occupational therapy, social skills groups if they have the language), and then try the more harmless vitamins and supplements/BioMed/diet approaches if they have any energy left over.

As for the vaccine issue: my short version is that vaccination is a critical part of our social contract. My long version is more complex:

I think that Jenny McCarthy and most parents our age don't understand what preventable diseases are like because *we* were all vaccinated against them, successfully. I don't fully agree with Amanda Peet, either. I think that if your family has a history of neurological or immunological issues, you should space out your kids' vaccinations. I usually but not always trust our medical establishment, remembering how Stomach Ulcer Guy got slogged through the mud until his peers realized "Oh wait, sorry, he's right," and set him up for a Nobel Prize. I respect the cautious position of The MIND Institute. I think we should all think and research for ourselves, and look past cardboard cutout celebrity messengers and into the research behind their messages.
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Anyhow. If you followed me on Twitter you would know that today I won a brand new Vespa! And that Leelo's social worker agreed to pay for his camp and more respite hours, without even blinking! School raffles and regional centers FTW!

If you were in my house, you would know that Iz and Mali were introduced to the term Epic Fail, when I gave Leelo a small bin filled with pinto beans so he could have some happy sensory time while I was prepping his dinner, and he immediately swung the bin in an arc so he could watch the beans spray throughout the kitchen and living room. I retaliated by grating carrots into his pancakes. Little bugger ate them right up and never knew the difference.

Off to sleep for a scant few hours before Jennyalice, DoubleTrouble, & I go stake out the office of the camp mentioned above so that Leelo can be one of the very few 1:1 campers at said camp. Wish us luck.

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Buy Cool Therapeutic Toys and Help SEPTAR

I will try to write a non-proclamatory or at least partially non-promotional post later today. Honest. In the meantime:

Want to raise funds for special needs kids and families while getting some of your holiday shopping done early?

Beyond Play is an online catalog that sells really great toys, including therapeutic ones. They have offered to give SEPTAR, the Special Education PTA of Redwood City, 10% back on designated orders during month of October -- if they get a minimum of 5 orders that check out using the code SEPTAR08.

So please make our kids and your kids happy by ordering those holiday and birthday gifts online at http://www.beyondplay.com/. Don't forget to use SEPTAR08 to ensure that SEPTAR gets credit for your order.

Thanks so much!

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