11.09.2008

Eight!

Eight!
Leelo being happier than happy during his bouncy house eighth birthday party earlier today.

The party was a huge success, with so many of our wonderful friends and their wonderful children. The cupcakes Ep and I made were wonderfully delicious even though we forgot to put the eggs in the batter. Leelo even at three bites of one! And I still have a pound of the mascarpone frosting in the fridge -- the best frosting I've ever tasted -- if anyone has an idea of what to do with it.

The two biggest joys of the party for me were 1) seeing so many children with sensory sensitivities having an unabashedly fantastic time in a completely safe environment, and 2) Leelo being so happy and in such a different aggression space than he was at DoubleTrouble's boys' birthday in June that I got to relax and let my son bounce without shadowing him the entire time.

We're so tired that we haven't even opened a single one of Leelo's presents, but who doesn't love it when birthdays get extended over more than one day?

Technorati Tags: , ,

11.08.2008

Zero to Eight

My sweet, loving Leelo is turning eight tomorrow. He has a snorfly nose right now, so I hope he feels better and has a longer-fused temper in the morning, as we have made arrangements for him and his friends to jump their brains out at a local bouncy house emporium (all we have to bring is cake and a lighter). That cake will actually be red velvet cupcakes with mascarpone icing, and if the kids think that they're gross, then all the more for us grownups. After the party and a break, we will take him out for naan bread for dinner. And I will give him the Chicka-Chicka Boom Boom DVD that I hunted down for him after those YouTube people with their "copyright violation" baggage took the video off the internet. And hopefully there will be more snuggling like there was today.

For those of you who haven't known Leelo since he hatched, here's a survey of our delightful boy on each of his birthdays for the past eight years:

Leo: Fresh and New
Zero

One-Year-Old Happy Walker Leo!
One (and so obviously showing early signs of autism *cha*)

Two-Year-Old Leo at the Long Beach Aquarium
Two

Three-Year-Old Leo Getting All Clean
Three

Four-Year-Old Leo During His Birthday Party
Four

Five-Year-Old Leo and His Dad During Uncle John & Auntie Mary's Wedding
Five

Six-Year-Old Leo Sneaking Into Grandma's Bed
Six

Seven-Year-Old Leo Loving the Monterey Bay Aquarium
Seven

Happy Birthday, Mr. Excitement!

Technorati Tags: ,

11.07.2008

Optimism Is Easier at the Federal Level

Election Day. I took Iz out of school early so she could come vote with me, because she wanted to be the one to push the voting buttons for Obama and against Prop 8.

She had a therapist appointment two towns away at 5 PST, and soccer practice from 6:30 to 7:30, so we spent a lot of time listening to the returns coming in on the radio, and trying to analyze what each state's results meant.

Seymour brought her home from practice, had a bite, and then he set Leelo up with a laptop DVD of Monsters, Inc. so the rest of us could watch the speeches in partial peace (Mali was with us, after all).

I was impressed by John McCain's speech, and thought that if that man had run the McCain campaign, they might have had a chance. Iz wanted to know why everyone kept booing every time Obama's name was mentioned or alluded to, and I told her that their behavior defined the difference between the two campaigns. McCain had unfortunately been a role model for petulance, and his followers weren't ready to give up their behavior patterns just yet. Mali kept jumping up and down on the couch, yelling "McCainMcCainMcCainMcCain!"

Obama's speech was delightful. He, and the crowd in Grant Park, made me feel that our country has changed for the better--almost tectonically. But I didn't cry until I saw Jesse Jackson crying; that floored me. Iz couldn't believe how cute Malia and Sasha Obama were, and that they were going to get a puppy just because they were moving into the White House. I screamed "YEAH!" when Obama asserted that ours is a country in which everyone is included, no matter our race, religion, sexual orientation, or *disability*. Mali kept jumping up and down on the couch, yelling "ObamaObamaObamaObama!"

We were all happy Americans on Election night.

And then, in the morning, we found out that Prop 8 had passed. I was dumbfounded, mostly because we live in San Mateo County where it was voted down by a very wide margin. And I can't believe that anyone would ever vote to take away rights, to legalize discrimination.

But I understand why it did pass. As I told Iz, people don't like change. And a lot of Christian people don't question what their churches tell them. That doesn't make them evil, it makes them ignorant. It means that they have confused the message of their church with the message of the man whose ideals they are supposed to hold supreme, Jesus -- a person who would never, ever have supported Prop 8. (Even Ann Landers would have agreed.)

But I remain hopeful, like so many others. As I told Iz, I have faith that when it comes to basic and to civil rights, our country will always do the right thing. Eventually. And by the time (and if) she's ready to wed, she and her peers will be able to marry whichever prince or princess has stolen their heart.

Technorati Tags: , , , , , , , , , ,

11.05.2008

The Right Toy

Still processing yesterday's sweet victories and callous disappointments. Though I wish I'd taken a video of Mali jumping up and down on the couch yelling "OBAMAOBAMAOBAMA!" during that gentleman's first speech as President-Elect.

In the meantime, I'd like to show you an example of how wonderful it is to find the right toy for a kid like Leelo. The toy in question is a Tactile Pathway made by WePlay and sold by BeyondPlay, and was Seymour's mother's birthday gift for our almost-eight-year-old boy:



Sweet.

The background song "Pony Boy" is one of Leelo's favorite tunes. It is sung by Jaycob Van Auken and Stephanie Schneiderman, and is from the That Baby CD--which I partially panned in a MotherTalk review a few months ago. Come to think of it, all my reviews for MotherTalk were mixed, which may be why I haven't heard from them in a while. Hmm. Perhaps honesty is not the best approach when reviewing Blogosphere schwag, if it comes with promotional undertones.

Technorati Tags: , , , ,

11.02.2008

Worry

India the Turkish Pajama Girl

This is what Mali looks like when she's worried that Leelo is too close by. She looks like this too often. Even though it has been a long time since he has succeeded in making contact, and even though he now only needs to tap her to get an extreme reaction, she gets this look on her face any time her brother is near. And I can't bear it.

Those of you who know me IRL may fleetingly wonder why I've been either totally losing my shit at the least provocation lately, or acting like the world's grumpiest zombie. This is why. I can't bear this. I can't bear, can't contain in my heart or my head the knowledge that the son with whom I spend so much time snuggling and giggling and playing -- who asks me to read him his favorite books with great big smiles, who asks for kisses all day long and gives me spontaneous bear hugs -- is the reason my precious tiny girl spends so much time anxiously on guard or screaming in honest terror.

We keep them apart. We try to convince her to not react just because Leelo is in the same room. We don't give him any reaction other than physical redirection when he tries to hit or push her. We are working on other ways to help Leelo manage his aggression both in the short and long term, but it's not enough, not right now.

Technorati Tags: , ,

11.01.2008

Note From Leelo's Team Meeting

Trying to get into the unofficial spirit of NaBloPoMo.

I had a meeting with Leo's teacher, primary para/aide, and Supervisors M and E on 10/29. Here is what we discussed, as passed through my somewhat grumpy filter:

Home News
We are using icons and visual schedules to help Leelo follow directions and make transitions for such things as: put on shoes, bathroom, wash hands, put on seat belt. They are helping with compliance.

Aggression at Home
Leelo tends to “target” his younger sister Mali about 20x daily, he doesn't get her at all if we can help it, but there are days when he gets her once or twice and then we have to isolate the two as much as we can in separate areas of the house; after an incident we focus on soothing Mali and do not give Leelo any reinforcement whatsoever.

His aggression occurs more often if he has been denied something, or been doing something for a while (boredom). Maybe latest upswing in aggression has to do with Therapist R going on vacation for two weeks, or the fact that Seymour and I have had eight trips between us in past six weeks, or the fact that allergy season has begun in earnest and we have not put Leelo back on Claritin after we stopped giving it to him in the early summer so his system could take a break.

We are taking Leelo for behavioral/aggression/meds/psychiatric evaluation in two weeks. It was recommended that we bring video clips that include incidents of aggression (though this will have to be under controlled circumstances), and repetitive behaviors.

OT at School
Leelo has an OT named Liesl who visits on Fridays for an hour, and who has come twice already. No one knows her last name, or where she comes from. I found out about her just one week ago.

Leelo's his previous OT just sort of didn't come back this year. She thought she'd notified me, Supervisor M, and his teacher, but she hadn't. So the district was out of compliance with Leelo's IEP for the entire first month of school before we discovered this lapse. I kept calling the district and getting no results, so I spent a lot of time on the phone with various occupational therapists (most of whom had wait lists) to see if we could get Leelo some private OT and then charge it to the district. Finally, one very awesome woman -- M. of Firefly OT -- called me back and said that she had two therapists who would be willing to do push-in OT onsite at Leelo's school. I called to let the teacher know and she then told me about Liesl.

There are some communication issues with the district, evidently, as they are the ones who recruited and placed Liesl without notifying anyone officially. Overall this is good news, but I am irritated about busy people duplicating effort.

Leelo's class staff will try to get more information, including contact information, for Liesl.

IEP Goals
School staff hard work with 1:1 correspondence is coming along. I notice this particularly at home because Leelo is starting to tell me that he has two ears but just one nose, whereas previously he always had two noses.

Leelo is starting to be able to use past tense (with picture prompts) to talk about what he did that day, e.g., "I ate," "I played" etc.

Copying letters continues to be challenging for Leelo. His teacher uses the Handwriting Without Tears program. His progress has degraded a bit (I have noticed that his written "Leelo"s are not nearly what they were last year) in the absence of an OT so his teacher will see if Liesl can help with this.

Food tolerance.
His school staff have been working with Leelo daily to introduce two food items -- orange pieces and hard-boiled egg white pieces -- to his diet, using a therapeutic and consistent food tolerance sequence. (I do food tolerance work with him at home using less-preferred foods.) Supervisor M and the class staff consider the program somewhat “stalled” as it is difficult to get Leelo to open his mouth and put the food in (he will touch it, pick it up, kiss it, and rub it on his lips, but nothing further). He is better with the eggs when they're dipped in salt, it was noted.

So, we're all going to take a two-week holiday from food program and resume before Thanksgiving. We will not let him have any of the veggie chips he loves so much during this time and save them as reinforcers for the reinstated program, to provide extra motivation. When food program resumes we will do ONLY 15 trials per session.

I am going to send the girls and Seymour off to his parents' house for Thanksgiving and put Leelo in food tolerance boot camp. It'll be just me and my boy for four days: no therapists, no school, no small children to injure when he gets frustrated after offerings of novel and less-preferred foodstuffs. Our current schedule and home environment never allows for those long windows necessary to become hungry enough to be motivated to try something new. He needs more fresh food in his diet, and some protein besides peanut butter and the eggs in his pancakes.

Typing.
Leelo is doing well with typing on the computer even though there have been some computer set-up changes since last year. We all need to begin working again with Leelo on word processing, starting with his name (we will ask for OT assistance). He should continue learning to play five new games. Conveniently, I used to work for a children's software publisher, and still have CD-ROM software that will work with the ancient computers at his school. I will send in several.

School Problem Behaviors:
Aggression.
Supervisor M showed us some graphs illustrating that Leelo's aggression incidents are actually fewer now than in spring and summer, about three per hour (this includes aggression towards himself as well as towards others). What she admitted that her graphs didn't illustrate was the occasional Intensity of his outbusts, and how dangerous they can be. The staff should complete incident reports when either Leelo, staff, or another child is injured, and should contact me that day. This discussion was quite effective as Leelo got written up the very next day for pushing another student; I discussed the incident with the teacher and told her that unfortunately in my opinion the safest thing to do is to try to keep Leelo more isolated when he is more agitated. There are a number of continuous screamers in his room; when he's in a good space he can tolerate them and keep working (which is amazing to see) but if he's easily distracted then the screamers make him crazy.

In general, we will all try to be more aware of Leelo's high risk times: For starters, everyone should be on their guard for:
  • Boredom
  • Attention turned away from Leelo, attention to others, general lack of attention
  • Many people suddenly arriving
  • Screaming
  • Less-preferred direction / demand
  • Removal/denial of something he wants (especially straw, certain foods)
  • Many consecutive demands without any reinforcement (e.g., during work time)
Keeping Shoes on.
Leelo consistently takes shoes off on the bus, and most often has them off during school; he is more likely to take them off when the weather is warm. Leelo needs to put his shoes on when he comes off the bus; in general, he should have them on during school EXCEPT when in the motor or sensory rooms, or grooving on the sand between his toes during outdoor recess.

Health.
Leelo needs to keep his hands clean and wash them after recess: Leelo currently washes hands upon arrival (after bathroom), before snack, before lunch (after bathroom); while washing, he still needs to wet his hands more thoroughly, and rub them under running water for longer. Staff will help him do additional handwashing in AM, and PM, and will work with Leo to be do a more thorough job.

Transition to Third Grade:
Talked about his placement options for next year. I am fairly bummed that he can't stay in his lovely little wonderful cocoon of a class with his wonderful teacher and fantastic supportive staff. Supervisor M and I will have to start to look around at other classrooms. And there aren't many of them for a boy like ours. There's a third grade class at his school, but so far I've not heard much about it. There are satellite classrooms on a regular campus one town over, which is where two of my friends' kids go, but the campus is totally unfenced. And I was reminded that an "open" campus with a 1:1 dedicated aide may in fact be more restrictive for Leelo than a segregated site like his current school and its rotating staff model, experientially.

Time to start with the site visits.

Technorati Tags: , , ,

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.

Technorati Tags: ,

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.

Technorati Tags: , , ,

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

Technorati Tags: