s h o r t break

Lazyasses and Liars

2010-12-22T13:11:00.000-08:00

So a few weeks ago I made that unannounced visit to Kiddo's school.

I specifically went around lunch time, planning to catch them in the lunch room where the teacher and aide couldn't scramble to make it look like they are doing their jobs. My timing was perfect... they were about ten minutes into lunch with about twenty more to go. The look on Kiddo's teacher's face said it all when I came in. Plastered on her mug was the exact expression I get from kids when I catch them doing something I just told them not to do.

Her face said "OH CRAP" but after an awkward pause she chirped, "Oh, hello!"

And as anticipated, no Go Talk in sight. Weird, seeing as lunch is the most practical time for him to have it out!

I sat across from her and Kiddo and painfully watched as she almost completely ignored him for the rest of lunch. She was sitting near several other students and didn't seem to have a problem regularly interacting with them. The only thing she had to say to Kiddo (who, interestingly enough, was the only student without a lunch tray in front of him) was to occasionally verbally remind and then prompt him to keep his feet flat on the ground when he got bored after fifteen more minutes and started stimming. A cursory glance of the lunchroom revealed that few of the other boys his age had both their feet down. In fact, many of them were standing, moving around the table, etc.

I had many opportunities to question and criticize the teacher, but that was not the goal of my visit. My plan was to just grin and bear it... stay quiet and uninvolved. After "hey how you doing?" I actually didn't say anything at all to Kiddo's teacher, just watched her. Which obviously ruffled some feathers.

I have this thing about handholding with people just because they have a disability. It pisses me off. If you can walk by yourself and don't want to hold someone's hand, THEN YOU SHOULDN'T HAVE TO! In fact, its one of Kiddo's goals with me to walk more independently. So what does his teacher want Kiddo to do as soon as the kids get up to leave for lunch? Hold MY hand!

"Would you like to walk with Kiddo?"

"Sure, he can walk with me. Lead the way, buddy."

Kiddo obviously knew how to get back to his classroom and walked just fine on his own, stopping once to laugh and hug me briefly before merrily moving along.

By the time we got back to the classroom, I'd been in the school for about forty minutes. I had gone to the office and gotten a visitor's pass, though I suspected that wasn't enough to technically observe Kiddo's class.

I quietly watched as Kiddo ran towards the new mini trampoline in his classroom (again, Go Talk has a trampoline button!) while his teacher looked around nervously. Then suddenly, she walked up to me and informed me that in order to observe her class I needed confidentiality clearance and an appointment. Why didn't she just kick me out at lunch? Interesting.

"Oh, well, they gave me a visitor's pass and I thought that was all I needed. Next time I'll make sure I get the necessary appointment. Thanks so much!" Then I left.

Take note, that last sentence was just about all I said the entire time I was at the school. Apparently Kiddo's teacher recalls a very different conversation.

Later at work I told Kiddo's mom about our encounter. She was of course, not surprised but irked that his Go Talk wasn't out. She told me she'd call the school as soon as she could to get the proper paperwork sent so I could visit again soon.

The next day Kiddo's mom said she'd called his teacher to get the paperwork, but that she had a really strange story to tell. According to her, I had gone into the school for less time, acted in a rage, and-- best of all-- CUSSED AT THEM! She of course found this story completely ridiculous and we both wondered aloud why she would make up such an absurd lie. Later, I was saying how crazy she must be to my husband. He replied with, "Crazy? Its not crazy to lie when you think your job is threatened."

The good news though... Kiddo got a Go Talk 9 (finally!)!!!! At least his speech therapist isn't a lazyass.

2010-11-13T14:15:00.000-08:00

Should have known not to get too high of hopes for Kiddo´s new IEP and teacher.

Kiddo´s backpack sits by the front door each day when I get to his house. When I come in, I open it to get out his Go Talk so he can choose a snack and later activity. Despite having a section in his IEP stating the need to use his Go Talk in the classroom so as to reach his communication goals, I can see it hasn´t been touched all day. There are five slides for the Go Talk, two of which are pretty much exclusively used for home use. I usually see one of these slides, the same one last used by me the day before, in the machine. Same as yesterday, the day before, the day before that...

I hate feeling in my gut that people (the ones who have the schooling, funding, and pay check) are not doing their jobs.

Kiddo´s school may soon be getting an unannounced visit.

.....

Kiddo´s speech therapist, on the other hand, has done her job well. For the past six months, we have been seeing a speech therapist once a week, and now we´re doing monthly consultations. She can fully testify to Kiddo´s ability to use the Go Talk meaningfully, even insisting that with enough perseverance, he should be able to use an IPad someday. Too bad the school seems so hellbent on holding him back.

Best Disability-Related Thing I've Seen All Week

2010-10-01T16:50:00.000-07:00

The other night my husband and I went to Kilby Court to see DopeThought, a local hip hop artist who we wanted to check out because we booked him to play an upcoming benefit show for a friend of ours. Kilby Court is a neat little indie venue, complete with Christmas lights and a fire pit. Typically, the kinds of folks you see there are indie/hipster kids with impeccable taste in clothes, perfect hair, and a slight aura of false superiority.

This show, however, had a much more diverse crowd than I've seen at rock acts at Kilby. Including, much to my glee, people from a group home having an outing! I love it when I see people with disabilities, especially those who have been resigned to live in some type of institutional setting, out enjoying activities other than bowling or a kids matinee.

And a late-night hip hop show of all places! Love it, love it! I wish I'd asked them where they are from, their staff won a lot of points with me and should be sent anonymous gift cards or something.

This Seems Eerily Familiar...

2010-09-21T09:56:00.000-07:00

Kiddo’s recent IEP meeting went better than anticipated, though not as well as I would have liked.

First, the few good things. Kiddo’s new teacher is younger and better educated, has greater enthusiasm, and is much more open-minded than his last one. The district speech therapist has also been converted, at long last, to the Go Talk’s efficacy (thanks to Kiddo’s other speech therapist), and even claimed that she’d get him a 9+ for this year. At his meeting, we even sat in a circle instead of the “’professionals’ on one side, mom on the other” configuration that Kiddo’s mom had been subjected to in previous years. His mom was also a lot more assertive than I’ve seen her at previous meetings, which made me want to regularly yell “GO MOM!!!!”

However, too much of the meeting seemed familiar. The bulk of Kiddo’s IEP team seemed reluctant to put “needs augmentative communication” in his IEP plan. Their pitiful argument was “but what if he doesn’t need the Go Talk and is using verbal communication at the end of the year, we’d still be required to use it!” Never mind that if they miraculously got him to verbally communicate, we could always change the IEP. They eventually broke down though when Kiddo’s mom and I rebutted, “yeah, and his IEP was like that last year, and ya’ll just used it as an excuse to NEVER use his Go Talk.”

His teacher, while she’s certainly an improvement, didn’t offer many goals for the year. She wants him writing his name by the end of the year, and spontaneously communicating five times a week. That’s it. No colors, no numbers, no self-help or social skills, no alternatives to aggressions, etc.

Last year Kiddo could sort colors and do some basic sequencing with 100% accuracy. His occupational therapist can attest to this. When we asked how the school would build on these skills, they replied with “Oh, but he can’t do any of those things…” We asked how they tested him, and they were vague. I pressed again, and they tried to change the subject. I turned the bitch switch on and flatly informed them that he had been able to do these things last year, and that they’d just have to teach him again if he hadn’t maintained them. They reluctantly added “sort colors” to the IEP plan.

The meeting ended more abruptly than I had anticipated, with half the team suddenly getting up and excusing themselves. Go figure. After it officially was over, I gleefully reminded everyone about how wonderful it was that parents can choose to update an IEP whenever they darn well please. Kiddo’s mom smiled knowingly, his teacher looked a little afraid.

People in power should always be a little afraid. ;P

Peace.

2010-09-11T09:08:00.000-07:00

Hey ya’ll. Moving while going to school is a good way to eliminate free time. Add months of unreliable internet to the mix and you’ve got a dead blog.

But I’ve been busy. Since moving into this apartment an abundance of produce has come out of the big garden and into my kitchen… tomatoes, kale, swiss chard, spinach, lettuce, eggplant, peppers, pinto beans, and a few other things. There are also five chickens and a rooster there now, and the four ladies are currently on the verge of laying eggs.

I have also started garden-related work at my new apartment. I’ve built a compost bin and started building a deep bed for veggies out of dumpstered stone, cement, and countertop materials (like some very pretty granite). The other side of my yard is nonstop shady, though when springtime comes I plan on planting some things on that side as well.

Kiddo is doing well, although honestly some events which occurred with him and his family over the summer have also halted my writing here. Nothing really involving me, per say, but mostly things I don’t feel ethically comfortable blogging about.

One thing though, of the whole pile, which would end up being mentioned in any future posts, and might as well be coughed up now. Kiddo’s mom is pregnant with their sixth child. Now, since I live in Utah and we’re talking about Mormon culture, discussing this situation must be done delicately, but that's not going to happen because I'm unfortunately not very delicate when writing about such matters.

The LDS/Mormon Church puts a great emphasis on matrimonial reproduction. While not going so far as to endorse the insanity of the Quiverfull movement, the Church has historically encouraged having large families and has regarded birth control as deplorable. As Mormon prophet Spencer W. Kimball said in a 1970s speech on marriage, “I have told many groups of young people that they should not postpone their marriage until they have acquired all of their education ambitions. I have told tens of thousands of young folks that when they marry they should not wait for children until they have finished their schooling and financial desires. Marriage is basically for the family, and there should be no long delay. They should live together normally and let the children come. . .” Emphasis mine.

So, not only should you get married “without delay,” you should just let those babies start coming, regardless of socioeconomic situation or education. If Justin and I followed this credo, we would be living in poverty, trying to figure out where we could even find housing with enough room for kids, worrying about how we could pay for school or even have time to get an education, etc… I call it being responsible, the LDS church contends I’m flirting with sin. Whatever. Just one of the many reasons I’m not a Mormon anymore.

Kiddo’s family often heartbreakingly demonstrates this doctrine’s lack of wisdom. His parents married young, with college completion a few years off, and starting having children right away. Five in nine years, soon to be six. Their house is quite small for the amount of people living there; only two hardly-adequately sized bedrooms are available for the kids. They had to add a third when the fifth baby was born so the parents had somewhere to sleep. Now, number six is on the way, and I can’t imagine where they’ll be putting that second crib.

Last year, their dad made less than $40,000, and they rely heavily on social services so their kids can eat easier and have access to healthcare. What makes this situation even stranger is that the LDS church, especially in recent years, has inflated the role of self-reliance in their dogma. The contradiction often ends the same though, with a family making no money having too many kids and then turning to the much-hated government for help.

I was once sitting in the kitchen with Kiddo’s mom as we waited for the kids to eat snacks. We usually skirt subjects like politics and general worldview in our discussions… they usually lead down awkward roads and have to be ended abruptly. However, this time we were somehow onto the subject of the role and size of government. She made a statement about how sometimes the government does things that are nice but she really didn’t believe in the government taxing people for “forced charity. “

Like, the food the government buys for your baby? The Medicare that pays for your prenatal care, the taxpayer-sponsored dentist who cleans your kids’ teeth? The forced charity that pays for me to come here and give you time to nap, clean, or run errands?

Those words sound really bitter, but I’m really not mad at Kiddo’s family for this. These attitudes and actions are developed in a culture which makes you fear hell for not struggling to attain what are for many, ultimately, conflicting and impossible-to-reach standards, and in a monoculture like much of Utah, are very hard to break down.

Ah, unsustainable pregnancies. A constant source of frustration.

Some Recent R-"isms"

2010-07-13T08:37:00.000-07:00

R is sitting on the family's plush rocking chair, as she and Kiddo and I listen to music. Out of seemingly nowhere, she abruptly states, "So one time, when I was a little baby, I was at church... and my mom gave me to my dad and then I POOPED ALL OVER HIM!"

"...R, where did that come from?"

She laughs hysterically.

"Weren't you wearing a diaper?"

"YES! The pee stayed in the diaper, but the poop came out ALL OVER MY DAD!" She continues laughing for several minutes.

Listening to a Kid's Bop CD later on, R takes note of some of the lyrics in a song being blasted from the family's stereo.

"These kids are SMART, Christine."

"How so, ladyface?"

She pauses before stating, matter-of-factually, "Well, they're saying NUMBERS. What smart, smart kids!"

Swimming!

2010-06-16T18:30:00.000-07:00

Kiddo loves anything liquid. Most of the materials we use for his sensory integration program are "messy," and he is naturally drawn to anything remotely wet. However, he also likes feeling safe and grounded.

Kiddo's dad is the manager of some of the public pools and aquatic centers here in Salt Lake City, so in the summer we always go "swim." I use that term loosely to describe Kiddo's previous experiences in the water, because he'd really do anything but swim. He loves the water, but mostly he'd just sit in the same spot for hours, stimming out in the shallow end, occasionally holding his breath and submerging long enough to get his hair wet. He would scream and recoil at any attempt to bring him into deeper water.

Until this week. I don't know whether it was the new season, his growing confidence, the sensory integration, a change of mind, or a combination of these things (or something else entirely), but he let me take him into deeper waters! He held on tight, but would laugh when we jumped up in down or when I'd throw him a few feet in front of me (with a big splash!) before pulling him back up.

Then, his brother J asked if he could use one of the pool's kid floaties. DUH!!! I told him "Yes!" and to grab a small one for Kiddo as well. The one J grabbed was a little too big, and Kiddo absolutely had no interest in wearing it and put up a bit of a struggle as I tried to slip it on him, but once he was strapped in and back in the pool he had a change of heart.

I really wish I'd had my camera, because he made the best faces as he floated about, unsure of what to do with his arms and legs at first. Eventually, however, with some encouragement, he began dog paddling around the entire pool. He would slowly swim from one end to the other, and when he had finally made it to the concrete, he'd smile proudly to himself and giggle before kicking off again. :)

Peace.

Always room for one more project...

2010-06-12T18:06:00.000-07:00

I've been nearly overburdened lately by the amount of projects I've taken on in addition to my regular work and school life. I am taking an algebra class right now, and being that I am completely incompetent at math in addition to having some severe anxiety issues (mostly related to testing) in that subject, much of my free time goes to studying and doing homework. Some friends and I have also organized a Salt Lake City Really Really Free Market and are in the works of producing an anti-authoritarian journal/periodical called The Wasatch Front (more on that as it becomes an actuality). I also have a new tattoo gun and am practicing on lots of grapefruit. I've also continued working on the garden and have increased the number of trips I make over there from one a week to about three. Still working my two jobs, as well, with the killer 20-30 minute commute to downtown.

Hopefully, however, I will be moving soon (within a week if all goes well), cutting my commute time anyways.

Still, I have other projects in mind that I'd like to work on. First, I want to get a bike cart or one of those kid attachments so I can bike to work instead of drive and still get Kiddo engaged in the community on a regular basis.

I also have had this idea brewing in my head lately for a comic book or zine. I keep thinking about people with disabilities, and how their presence is virtually nonexistent in radical communities (not to mention mainstream society), and how to address that in a way that doesn't come off as boring/preachy. The idea I've had would center around a teenager with autism who loves trains (intentionally chose the stereotypical "special interest"), who has run away from home to escape his crazy family who wants to either put him on Lupron or in an institution or something, and finds himself hopping his beloved freight trains around the country... and... ideas get inconsistent from there on. I chose trains, however, because I thought it would be interesting to take a stereotypical special interest like trains and have the person participate in it in an unusual way. Lots of people with disabilities are homeless, so I thought it could provide a forum to discuss those issues as well.

Thoughts?

Kids Say the Darndest Things plus Seizures

2010-06-12T10:57:00.000-07:00

"I wish I had autism and [Kiddo] did not. Then I would be able to play with you all the time instead of once a week."

"I wish I had autism... I could yell and laugh instead of talking."

I hear a lot of "I wish I had autism" statements like this from Kiddo's sister and the family's middle child, R. She is five, and is still learning to understand the full meaning of her brother's condition. Much of the time, however, this worldview is positive, because she sees her brother as a happy person (which he is) and doesn't constantly pity him. She also doesn't put up with him pulling her hair or head-butting her (unlike her older brother and mother, who usually allow Kiddo to be aggressive towards them), and has most of the same expectations of him as she does of her NT siblings.

Like most young kids, she tends to see only the good things in his life, not the challenges. When she says things like "I wish I had autism because...", I remind her that her brother does get sad or upset sometimes, especially when he is unable to tell people what he wants or needs, and that in many ways he won't have the same control over his life as an adult as she will. When talking to her about autism, I try to convey the message that autism isn't necessarily bad, but it also isn't a free ticket to easy street either. She is a very bright five-year-old, however, and I'm sure when she gets older she will have a very well-developed sense of her brother, his autism, and what that means for him, herself and the larger community.

Yesterday, Kiddo's youngest brother, who is around 18 months, had a febrile seizure. There was a note on the family's door when I went to pick him up vaguely explaining that they were at the hospital and Kiddo was at his grandmother's house. When I went to get him and asked what happened, his grandma explained the baby had what appeared to be a grand mal seizure.

Let me make one thing infinitely clear about my beliefs regarding autism: in no way shape or form do I believe vaccines are the cause. However, when his grandmother told me this, the first thing I thought of were all the stories from the anti-vax community with the general framework of "my kid was fine, got their mmr shot, got a fever, had a seizure, and the next day they were autistic." I could hardly believe I thought of this when she told me, especially because I knew about febrile seizures, which are very common in infants. I saw the baby when he got home, and of course he's fine, so I just felt like an ass for the rest of the afternoon.

Kiddo Meets the Garden

2010-06-12T10:14:00.000-07:00

Kiddo has finally been to the garden! His family has recently begun their own vegetable garden, and I thought his inclusion in their project would be sweet. So, I brought him and his sister, R. over to the garden I work at to see what, if anything, he found naturally motivating.

The first thing he did was run excitedly through the tall grass right behind the house. Then I walked him through the back, over the bridge where the irrigation ditch is, through the plots, into the chicken coop and through the other flowers and overgrown plants.

What he found most engaging, however, were the dandelions. He would first remove all the heads, then meticulously pull each stalk from the main plant and put it in a pile. Then he would take each one and pull it apart like string cheese, watching his work with fascination. How cool, Kiddo's a natural weeder!

He also loved the flowers from the two snowball bushes on the property, and would pull apart the clusters of little flowers with the same interest.

R also loved the garden, and picking things.

She also took a lot of pictures.

Peace.

If only the world were run by nine-year-old environmentalists...

2010-05-29T11:41:00.000-07:00

I adore Kiddo's nine-year-old older brother, J.

He's one of those kids who loves books and would rather read than do just about anything else. He's obsessed with robots and Legos, and in contrast to most kids his age (and people in general), has a passionate love for the natural world. He knows more about wildlife indigenous to Utah than most adults who have lived here their entire lives, and is very interested in alternative energy and sustainable housing.

While I'm aware of his eco-interests and also love them, they are not something we typically talk about. However, the other day, we were driving to a more distant library to get a free book for him from some elementary school program they have up there. There are a lot of abandoned lots and buildings in Salt Lake City, and they seem more prevalent in J's neighborhood. As we passed one of the many vacated parking lots, J went on a sort of enviro-tangent.

"Look at all these empty lots!" He suddenly called out from the back seat. "Just such a waste! Why do they just let them be like that?"

"Well, a lot of times someone owns them and doesn't know what to do or doesn't have the money to do anything with them."

"Well that's just ridiculous. They should just plant a forest on all the empty lots and places, and then people would be able to go camping right in the city. And if all the lots were like that, it would be like living in a forest. Forests are so cool. And you know what they should do with all those empty houses that are falling apart? They should just tear off the roofs and then trees will grow inside of them and they would be fun places for kids to play."

He continued for a few more minutes, explaining that there are better ways to plan cities to accommodate trees and existing wildlife and expressing his frustration with society's complacency. I think he was getting a lot of bottled up emotions off of his chest, because after he'd said all he wanted to say about houses he sighed deeply, before moving on to discuss factories and the pollution they cause.

"I don't understand why they don't have factories which are not polluting. They know how to do it and they just don't for some reason. I mean, they don't even need a lot of factories and things, and they don't need to drill for oil if they would make wind turbines and solar panels and so many other things we know about. I know there would be no new Legos if they stopped drilling for oil, because plastic is made from oil and corn mostly, but I'd rather have no new Legos than a polluted planet. Maybe someday people will invent better ways to make Legos, but right now people just don't so they should just turn the factories into places for kids to play and trees to grow instead."

I was pretty impressed at this point. Then the real kicker came.

"You know how there's supposed to be a big earthquake in Utah right? The one they always talk about?"

"Yeah, what about it?"

"Well, I wish it would happen soon, because then all the buildings could fall down and the concrete would crumble, and then all the seeds deep in the earth would be able to grow, and instead of a city we'd have forest."

"But wouldn't that be sad if lots of people didn't have houses anymore? And no roads?"

"The earthquake is going to happen anyways... and besides, we could live in treehouses instead and get around on ziplines instead of cars. That would be way better than what we have now. I mean, look outside right now... there's more cars than there are trees. Ziplines are way more awesome than cars."

I can only hope my own children grow up with these thoughts.

Creepy Flashlight Guy

2010-05-11T20:13:00.000-07:00

Part 2 of my "old letters series."
~~~~~

Hitch hiking isn’t dangerous… but sleeping at RV parks might be.

We had heard from friends in Salt Lake City that Highway 1 along the California coast was the way to go if you were hitching. Even kids who typically hop freight trains animatedly confided that they’d rather hitch along that coast than take a train… all for the spectacular views. Our friend Dallan had been the most convincing; his eyes shining like the silver-blue oceans in his memory as he described the worthwhile beauty on each side of the two lane road.

And it was beautiful, for the time we saw it. We caught a ride out of San Luis Obispo with an old man who lectured us about the spot we chose to hitch hike from (he didn’t think we gave drivers enough space to pull over, though he seemed to do just fine) and bored us with brief, vague stories about his own hitch hiking experiences from long before we were born.

He dropped us off at a beach and camping site a few miles north of Morro Bay, letting us know as we grabbed our gear that it wouldn’t be likely for us to catch any rides there until the morning. He pointed out the camping site, wished us luck, and departed. We cooked some rice and the rest of our dumpstered vegetables in our hobo stoves, fed the dog, and explored the beach. The campsite seemed to be a few miles walk into a small forest area. We decided to try hitch hiking until the inevitable fog came, and if our luck had run out for the day, we’d hike the campsite. After a while, the biggest cloud of fog either of us had seen began to absorb the beach and woods, Justin describing it as “black metal as fuck!” Within minutes the ocean had been quietly buried, and a quick head turn revealed that the woods were next. I checked my wristwatch and declared five more minutes on the shoulder. Literally seconds before taking down our sign and resigning to the now concealed copse, a Jeep lumbered out of the parking lot across the road and immediately pulled over.

Another sole old timer invited us in, and after some luggage-tetris we melted into our seats. Our driver turned out to be a just-retired-engineer-turned-photographer named George. He didn’t ask us many questions, but talked for most of the trip, periodically pulling over to take some photographs of things like the Hearst Castle and ocean water that looked more like CGI than real life. He told us that after a year and a half of volunteering in Sri Lanka had made him unsatisfied in his job and that he was now working on publishing a photo-memoir called “Another Leaf.” George told us about his multiple houses, ex-wife and beautiful children he’d photographed while volunteering, chatting nonstop for hours. Americans have a notion that only psychopaths and morons pick up hitch hikers, but in my experience it is just lonely people.

Night fell upon us as we reached the curvaceous mountain roads that clung to the coastline… just as we clung to our seats as our driver nonchalantly raced at almost twice the speed limit. George laughed and said “if my driving is scaring you, just yell at me… just not too loud, haha. No really, if I’m scaring you, just let me know.” Having either a bizarre idea of tact or an inclination to be silent, neither Justin nor I questioned his erratic driving. We passed the Piedras Blancas Lighthouse and the crass, enormous summer homes forced into the magnificent cliffs throughout Big Sur.

George offered us a place to sleep in his RV and a ride to the 5 Freeway in the morning, or a drop off at any place we fancied along the way. We told him we’d consider the couch, drawing boundaries and haphazard scenarios in our heads. After stopping for coffee, we decided that he could pass through our “psychopath filter" and we could at least check out the RV park.

I could hardly stay awake as we practically fell out of the Jeep and stumbled towards the brightly-lit RV. After going over our options, Justin and I chose to sleep in the meadow behind the park, not quite thrill-seeking enough to climb into the RV with our new friend for the night. He pointed us out a nice spot under a tree and authorized us to “tell anyone who gives you trouble that you’re with George.” Aching and grumbling, we rolled out the tarp and sleeping bags, took our last pee for the night, and passed out.

It wasn’t the light that woke us, but Biscuit’s warning growl. Dogs have a fascinating language, and right then I suspect that Biscuit was calmly, but assertively saying “Guys, guys… there's a dude over there being sketch as fuck."

It took me a second to wake up and get a sense of what exactly was going on. About three RVs down from where were trying to shush the irritated dog, the dark shadow of a man stood with an annoyingly bright flashlight. He scanned the meadow, as if not sure where the dog’s growling was coming from, and then fixed blinding beam on us. He held it there momentarily; us more fervently whispering to Biscuit to cut it out, and then he turned it off.

All we could see was the lit cigarette he was smoking. The little red glow hovered there for a moment, and then he turned the light on again, holding it there like some annoying god saying “ha, caught you.” Biscuit had elevated his warning to say “Listen, asshole, I still have a lot of room in my stomach and you’re starting to act delicious.”

Justin and I waited in the harsh light for the man to say or do something. He turned the light off again, still smoking his cigarette, waited for a moment, then turned it on us yet again. Biscuit was getting difficult to contain, now he wanted to stop the guy himself. Justin forced him to lay down and tried to calm him, but Biscuit only got louder. The light turned off again. And on again. And off.

“Okay, this is fucking stupid,” I hissed, reaching for my own flashlight, “two can play that game, motherfucker…” I was terrified and shaking, but finally grasped the sleek metal comfort of my light’s handle. I lit it up and shined it on where our harasser had stood, but he was gone. Biscuit quieted down a bit, still alert and pissed. Justin and I were terrified.

“What the fuck, man?”

“Who the fuck was that and what the hell was he trying to do?”

I thought the raccoons had been scary. The raccoons were nothing more than cupcakes with fake spiders on them... this guy had been a true monster. I pulled my bag closer, gripping my flashlight like a frightened child with a stuffed bear. Biscuit curled up on my legs, all three of us looking around for any further provocation. Somehow, I soon fell back asleep.

“Boy, you on private property!”

I lazily turned over in my sleeping bag, not sure if we were still sleeping or having another confrontation with an RV park asshole.

Apparently it was the latter, because he continued his comments, which were directed at Justin. “You best git on outta here, boy, yer on private property and if you don’t yer gonna git yerself shot fer truspassin.”

“Um…” Justin casually informed our rude alarm clock, “We’re with George.”

The man paused.

“George?!” He exclaimed this like it was a secret password we had trickily figured out to prevent him from dutifully shooting us. Without another stammer, he stormed back into his Old Glory-adorned RV.

Justin sniffed his stuffy nose, spat, and glared at the gaudy display of U.S. patriotism. The guy’s RV looked like the 4th of July decoration aisle at Wal-Mart. “Fucking Americans," he observed, "they’re so friendly.”

We stuffed our sleeping bags into their compression sacks, rolled up the tarp, and cracked unapologetic, mean jokes about American jingoism. Yawning as a side-effect from the disturbing night, we knocked on George’s door. He made us some coffee and showed us some beautiful and sad photographs of people and places in Sri Lanka. He then led us the park’s showers, and had I a few more bucks I would have stayed in there for hours.

George drove us to the 5 freeway as promised.

Californee

2010-05-09T23:58:00.000-07:00

I am in Orange County, California visiting my mother and brother. As far as my past and current experience goes, the OC is an utter wasteland of a place... little more than a ginormous condo community and minimall. However, I've stumbled across some letters I wrote last year while traveling to less/more savory parts of California, and have decided to publish some of them here.

Let's start with raccoons.

~~~~~

We were tired and full and just wanted to find a place to sleep. Justin, Biscuit and I had hitchhiked into San Luis Obispo earlier that afternoon and had been ballyhooed in great detail of a possible sleeping place with “a totally spectacular view” called Terrace Hills.

Our informant was a middle-aged cyclist who happened upon us at the local coffee shop. He seemed to pity us after realizing we had no site in mind to rest our weary backs, it completely not occurring to him that I’d be fine with spending our time exploring the town and stumbling upon a place to spend the night. With almost unwarranted zeal, he hunted down a phone book in the coffee shop for fifteen minutes, afterwards exuberantly trying to navigate me through the unfamiliar lines and street names on the city map therein. Terrance Hills itself did not appear on the said map, “but its right about here” he eagerly reassured me by pointing to the apparent location. Finally, both of us satisfied that I could apprehend the area, he handed me three dollars and departed, his good deed done for the day.

We started out okay, passing foretold signs and landmarks, carelessly venturing in the right direction. Then somewhere, though I tried to follow his instructions best I could, I obviously screwed up. The railroad tracks that had been described were nowhere along our track, as were the street names I’d memorized. I didn’t say anything to Justin, less and less caring how on track we were.

A few minutes before closing time, we came across a health food store and decided to check its dumpster for abandoned goodies. And what a feast there was! Justin gleefully pulled out a box containing four perfectly ripe avocados, two red apples, a grapefruit, some bagged vegetables, an organic tomato, bouquet of fresh basil, and half a fresh watermelon. We carried our find a bit further, halfway hoping to run into some indication that we were headed in the right direction, and then finally plopped down in an empty lot to gorge ourselves. With some sub rolls I’d purchased earlier with an old Albertsons’ gift card, we dined on avo-tomato-basil sandwiches and watermelon.

Across the dimly-lit road, nestled between hills of yellow grass and weeds, was the entrance to California Polytechnic University. Recalling the map from a few hours before, I was finally certain that we were way off track. A student with a fashion mullet and purple skinny jeans walked by, nice, but unable to give us information regarding our original goal.

“Fuck this,” I grunted between mouthfuls of watermelon, “let’s just sleep up there.” I pointed to low slopes of dry, matted, cadaverous-looking grasses and other forage. It didn’t look like much of a hike, but was high and secluded enough that we’d likely go undisturbed till morning. Justin agreed, so we stuffed the apples and grapefruit in an extra plastic bag and raced across the street to locate a point of entry. Biscuit was getting tired, but was still alert and adventurous, eager to sniff the unfamiliar plant life at the base of the hills and seek out something to chase.

Turns out the hills weren’t as easily penetrable and they appeared. A menacing fringe of thorny bushes and implausibly monstrous grey-green weeds seemed to be the foundation of the desired hill. Still, we advanced further and further down the road, determinedly looking for a weak spot to invade.

Then Justin found the dead snake. The creature appeared to have slithered halfway out of its hole, its jaw slack and eyes open as if it had simply gone “oh, fuck!” and keeled over right then and there. It looked so ridiculous that Justin and I wondered if it were a plastic toy, placed there to alarm passerbys. Justin poked at it a bit, until my patience wore and I began to nag him to cut it out. Now we were nearly at the end of the not-so-opportune hills (though we hadn’t checked the ones on the other side of the street) and decided to wander through the university to check the much grander hills we could see towering behind the parking lot and student dormitories.

Polytech University, as it turned out, is quite an interesting campus. Tempting orchards, model irrigation systems, livestock, and other programs kept us interested throughout our hike through the campus. As we neared the campus’ Einstein’s Bagels and partying students, I saw an inspiring amout of bicycles crammed together in a ton of little parking structures.

We spotted some restful looking hills directly behind the dorms and determined that we should try to sleep there. Finally, we looked down on a silent ravine, nestled between the partying students and the road leading through a canyon like a secret hiding spot. Ignoring the “No Trespassing” signs, the three of us hiked down the grassy slope and followed a dry stream bed to an inviting tree. All was quiet except for the occasional passing car along the canyon road and the few students who were still awake way above us. We were secluded enough that we were sure not to be found out, but close enough to the road and the dorms not to feel too isolated.

Justin and I threw down our heavy sacks and relieved Biscuit of his Roughwear doggy backpack, stretching out our aching bodies and sighing relief that we’d finally found a place to rest. We threw out our sleeping bags and Biscuit collapsed onto Justin’s as if he’d never known such relaxation. I pulled out my letter writing kit and began to scribble an address. The sky above us was a peculiar, milky-orange color, a byproduct of the foggy nature of the sky and the city lights beyond.

A few minutes passed, and the forest we were calling a campsite for the night began to look a bit creepy. Then, we heard the scuffling.

It wasn’t terribly loud, but it wasn’t quiet either. At first it sounded like a drunken frat boy stumbling lost through the thick leaves, but then it would be utterly silent. Justin and I watched with wide eyes and stiff, quiet bodies. Scuffle, scuffle, and then quiet. Scuffle, step, step, step, quiet. Justin and I looked at each other.

Scuffling, stepping through the leaves. I don’t believe that I had never been so completely terrified. Literally, I felt that my veins were frozen. Fear slowly pulsed through me like a drug you can’t get out of your blood, almost to the point that you’d slit your wrists just to purge it. Justin sat observing the area where the unidentified noises originated from, calm but alert. Biscuit just snored, which should have assured us that nothing threatening was lurking about.

Whispering with considerable unease, we debated what could be creating the racket. A person? An animal? Not likely a person, we determined, it sounded more like a small group of smallish animals foraging. But what animal? A mountain lion would not have been so carelessly noisy, and Biscuit surely would have alerted us by now to something interested in eating us. Not mice or rats, too small. They must be raccoons. We even heard some tell-tale squeaking to validate our theory.

But we weren’t sure, as our eyes had not actually seen the furry beasts.

It is almost mind-blowing how something as humdrum as a hungry family of raccoons can be so embarrassingly fearsome to modern, nature-sheltered humans late at night. Raccoons, I knew, are benign creatures who generally avoided confrontation unless they or their young were directly intimidated. Even Biscuit, who growls or barks at anything that even seems to have the most miniscule capability to infringe on our territory or safety, snored peacefully through most of the incident. But still, I rolled up my sleeping bag and squeezed into Justin’s, irrationally puerile and still shaking scared. Knowing full well that it was just raccoons that would ignore us, I lay wide-eyed like an atheist who isn’t 100% sure about the nonexistence of a god.

Then, at about three in the morning, Biscuit, who had been slumbering this whole time, finally must have decided that the squeaky critters were too close. He sat alert, eyeing a dark spot not more than fifteen feet in front of us. Justin and I also sat up, seeing nothing. An invisible raccoon hissed, Biscuit growled, and Justin and I decided at last to just leave the place.

Five minutes later, adrenaline channeling stamina through our exhausted, sleepless bodies, we hiked back through the tall, yellow grass, passed the dorms, before finally coming back to the hills at the front of the school that we’d originally schemed to sleep upon. Looking across the road from them, we realized there sat an even more secluded little hill, with no brambles or dead snakes to impede us.

A brief hike and a quick turn later, completely hidden in lovely trees and almost insultingly perfect, was a sleeping spot. Even soft mulch was littered about, coyly whispering “Here I was all along, now come and rest.” And so we did.

A Five-Year-Old's Explanation of Autism

2010-04-20T07:56:00.000-07:00

Yesterday, Kiddo, his sister R and I went to the park at Lindsay Gardens, which is awesome because it is overlooking the enormous Avenues cemetery. We brought some sand toys, and a few other kids joined us in making "pod houses" and castles. One of the little boys, who was five or six, asked R if her brother could talk. Her response was pretty dang cute.

"No, he cannot talk. He has autism. Now let me... well, I'm going to tell you what autism is. It means he can't talk but likes to yell and laugh a lot. But he can use his Go Talk instead which means he talks with a computer sometimes, but not today because it would get sand in it and it would break and he'd be so sad. But we go 'do you want to listen to music?' and he goes "YES!" on his Go Talk and we listen to Johnny Cash and then he lays down and is so happy. But then he gets mad sometimes and pulls my hair."

Which reminds me... a few weeks ago, while Kiddo was asking for treats on his Go Talk, R sighed and informed me, "I wish I had autism. Then I could use my very own Go Talk!"

Pecans and Sugar Cookies

2010-04-18T15:21:00.000-07:00

Vegan sugar cookies made with dumsptered bananas.

And thirty pounds of dumpstered pecans!

A Sampling of the Abandoned Houses in Rose Park...

2010-04-12T19:10:00.000-07:00

These two fine former homes sit on nearly half an acre. The house on the left is in prime condition (other than the back room) for squatting. The house on the right is bigger, but would require more work in order to be safely/comfortably inhabited. The backyard would more than suffice for an enormous garden.

Some others.

Peace.

Gardening

2010-04-11T16:05:00.000-07:00

Some things we have learned from this gardening experiment:

1. Don't put tomatoes into lousy, tiny paper containers too close to the window. All the water gets sucked up and the poor sprouts fry.

2. Teacups make excellent bug traps. When the slugs start coming out, we can fill them with beer.

Hoping for lots of Swiss chard. :)

Peace.

Picky Eater

2010-04-09T22:54:00.000-07:00

Kiddo has always been a picky eater, or so his parents tell me. When I first started working with him, his diet was limited almost exclusively to foods which were the consistency of mush. Soggy cereal, oatmeal, bananas, yogurt, peanut butter, mashed up rice with gravy, and scrambled eggs comprised the majority of his diet, and a good amount of the time he spat those foods out as well. He would frequently go through phases where he would only eat two or three foods for days. Kiddo's diet was usually accommodated for at home, but it was often difficult for his mom to always have to make "backup foods" for him when he didn't want to eat a particular item being served. That, and eating only two things for days on end isn't exactly healthy.

At that time, my husband, Justin, was working at the Vertical Diner as a chef. Since Kiddo doesn't like going out in the cold, and I often ran out of new places to bring him anyway, I started bringing him into the Diner once every week or so, and Justin would hook us up with discounted/free food. At first, Kiddo would get just pancakes or a chocolate shake, because that's what he liked and the biggest issue was keeping him in a chair.

At home and when Kiddo would go out to eat with his family, he was usually put in a toddler booster seat so he wouldn't get up and wander around. There was pretty much no way I was putting a six-year-old kid in a booster seat, so the first few times we went to the Diner revolved around bringing him back to the chair to wait for or finish eating his food. Sometimes he'd sit down on the floor (his standard resistance tactic), usually he'd run away, and occasionally he'd lie down and spin in a circle making his "Satanic sounds," as they could be accurately described. But after a month or so of practicing sitting and waiting (and being rewarded with really good pancakes or a milkshake), he wouldn't get up unless he needed to use the restroom or had been sitting down for a dang long time.

Once he could wait in his chair, I began ordering random things off the menu, mostly side dishes or small plates, and would try to get Kiddo to eat it with me. I'd let him touch the food and destroy it or push the plate away, or eat it, whatever he wanted to do. When he tried a new food (even if he didn't finish it or found it disgusting and spat it out), he was rewarded with something he did like, either candy I'd brought along or a milkshake for eating a lot of new food. Eventually, he began eating all kinds of new foods, even tofu! He still prefers really soft foods which don't require a lot of chewing and have a neutral or sweet taste, but he's definitely made a significant dietary expansion in the past year and a half.

But, he was still sitting in a booster seat at home and at his grandparents' house long after he'd mastered the ability to do so at my house and at restaurants. Thankfully, however, his parent's booster seat broke and I would just take him out of the one at his grandparent's if I ever saw him in it, making some loud comment like "Oh, you don't need to be in a booster chair! You're so good at sitting in a big kid seat, let's get you out of there!" His grandparents eventually got rid of theirs as well.

Although Justin doesn't work at the Diner anymore, I still bring Kiddo to restaurants and introduce him to new foods whenever possible. Thankfully, I get to write that off of my taxes. :)

Today, for example, we went to a Middle Eastern market and restaurant that a friend of mine recently got a job at. We attempted to eat a dolma, raw tomato, and pickle slice, but he didn't like any of them.

However, he eventually warmed up to the delicious home made bread, after a few attempts.

Peace.

Another excellent day

2010-04-08T19:51:00.000-07:00

The weather has been kind to us lately.

On Thursdays we usually go to Craft Night at Boing!, but we've been slacking lately.

Today I tried to get us back into the craft routine, but there weren't any crafty Boingsters to be found. Apparently they were all outside enjoying the day.

So instead we tried out a hammock, because Kiddo's never been in Boing's backyard and stomping on the garden plots wasn't an option.

And then we brought the crafting outside, where Kiddo colored this lovely picture frame.

Peace.

Help Wanted

2010-04-08T19:23:00.000-07:00

Seeking technology nerds to help me design a Crystler van customized with hacked Dynavox technology.

Summer Come Soon

2010-04-07T20:13:00.001-07:00

I want time to draw again.

Days Like Today

2010-04-07T17:05:00.000-07:00

I really love days like today, when the weather rules and Kiddo won't stop smiling.

It is really strange how sometimes, obvious things which have been there the whole time suddenly appear out of seemingly nowhere. Like this spinning ball thing at Liberty Park. It has been there at least since I started going, but I never noticed it until today.

Lately Kiddo has been willing to try new things (like climbing on and then jumping off rocks!) with determination and usually a big grin on his face.

When Kiddo was in preschool, he would often come home and cry until he fell asleep. Now, he is the happiest person I know.

Peace.

Not Really Gardening Today

2010-04-04T16:17:00.000-07:00

What do you do with a pile of dumpstered kiwis and bananas?

Make Kiwi-Banana Breakfast Cupcakes!

Biscuit hates gardening.

Dumpster diving bounty.

Tomatoes and some other things... but mostly tomatoes.

Rainwater collection: Um, technically illegal around these parts. Pretty ridiculous, huh?

Anarcho-sports!

Terrariums

2010-04-03T14:21:00.000-07:00

I live in a basement, and I'm typically only home between 7:30pm and 4:30am on weekdays and about half the day on weekends. There is only one window which brings in very little light, making for a hostile plant-growing environment. I've killed cacti and plenty of flowers down here. Now that the snow is starting to disappear, moss is sprouting up everywhere outside.

So I decided to try making some moss terrariums, complete with polymer clay mushrooms and cheesy inspirational stones.The stones, shells, and moss are free from around the neighborhood, and the jars were about a buck each from Deseret Industries.

Haven't killed them yet.

Penguin and June Sucker Love

2010-04-01T21:19:00.000-07:00

Last week, Kiddo, his brother J and I went to the Living Planet Aquarium to see the new penguin exhibit. A friend of mine was good enough to hook us up with three free tickets.

Kiddo adored the penguins! One of them also seemed to adore Kiddo as well, and hovered by him for several minutes.

I've also noticed how extremely difficult it is to take pictures at the aquarium with my camera.

But I managed to get a few that I liked.

Also, Kiddo remains completely enamored by the June Sucker's habitat. It is the most difficult exhibit to move him away from, even more difficult than the sting ray's tempting pool.

Gateway (Which Is Often Hell But Not Always)

2010-03-22T20:27:00.000-07:00

Kiddo loves the Clark Planetarium; especially their Science on a Sphere and Foculant Pendulum, both of which were probably invented with stimming in mind. The best part about the Planetarium is that its free unless you see a film or buy a membership (which pays for films). The Planetarium is at the Gateway Mall, which is a completely hellish place (as far as I'm concerned, anyways), minus the Planetarium, "Olympic Legacy Plaza," and Discovery Gateway.

Kiddo usually loves playing in the kid-friendly water fountains at the OLP, but as you can see, was a bit concerned by the slightly cold weather.

So he decided to lick his collar instead... which was extremely cute, but not exactly like running through a musical fountain.

Peace.

What do you do with a great big box of dumpstered oranges at 2am?

2010-03-21T16:00:00.000-07:00

Make hella orange juice!

Oh, and it was so good.

Sibling Rivalry, the Interesting Things Kiddo Does, and Coercive Tactics

2010-03-15T20:46:00.000-07:00

Today Kiddo and I took out J, his 9-year-old older brother, on our outing. I knew today would be different from our experience with R, but I did not anticipate the extreme level of jealousy Kiddo expressed.

First, we went to the City Library. Easy enough, it is Kiddo's favorite place to go, and we provided him with a thick slice of cheddar to sweeten the deal. Kiddo played in the Attic, J read Scooby Doo comics, and we had a peaceful-enough two hours. Then, I asked J if he wanted to choose a different activity, and he asked if we could go to Liberty Park. "Of course!" I said, and off we drove.

Kiddo doesn't like going to parks in the winter. There is something about being remotely cold which he finds unforgivably offensive, and he usually bolts back to the car once he figures out we're walking towards a playground. However, today was pretty dang warm, and the goal was to take turns with activities, so I threw him over my shoulder and dumped him in a sandbox, where he soon remembered how fun it is to watch the granules slip through his fingers.

But then he realized I was paying attention to his brother. At first, he tried to pry me away, smacking his jaw in frustration and pulling me by the hand.

"Hey, buddy," I tried to reassure him, "I'll be with you in a minute. I'm going to play with J... but you can play with us if you want."

That comment seemed to be the deal breaker. He shot me a look I can't quite describe, recoiled his hand, and fled into the grassy picnic area surrounding the playground. I followed him and took his hand, asking again if he wanted to play. When I grabbed his hand, he sat down; this is what Kiddo typically does to avoid being forced to do something he doesn't want to (like get in the car, not run in the street, etc). I withdrew my hand.

"Okay, then. I'm going to play with J now. You should come and play with us when you feel like it."

I walked back to the middle of the playground where J was standing and handed him a marshmallow. J looked back at me, somewhat confused that I was allowing him to do what he wanted. "Um, are you going to go get him?" he asked.

"Nope. I want to see what he does."

For the next 20 minutes, Kiddo refused to come near us, but he watched us with vigilance. Occasionally I'd give J some candy, and he'd come within a few feet, but the second I would extend my hand he'd run off again. I've never seen Kiddo do something like this... but I've always been one-on-one with Kiddo up until last Friday. Eventually, he got bored or something and cautiously came up to me.

"What's up, dude? I'm so glad you came back to hang out with us." He quietly took my hand and led me to a swing.

Whether it was jealousy, anger from the perception of force, or something else I don't know... but I found it interesting nevertheless. I asked J if he'd seen his brother ever do something like that before, and he said he hadn't. However, Kiddo's family also has a different dynamic than he and I do, and I'm significantly less inclined use coercive tactics (which Kiddo often interprets from a hand-hold).

One thing I want to work on with J and the other kids is to be a lot less hands-on with Kiddo. Granted, I hold his hand quite a bit, and have had to force him to walk with me (like when he's throwing a tantrum in a parking lot), but Kiddo's siblings are often constantly directing his movement through physical force. Today I noted J is so used to this that he rarely gave Kiddo even the slightest chance to walk on his own: he consistently held onto his shirt or arm, trying to force him to walk alongside him, even though Kiddo is typically fine walking on his own (granted, a lot slower, but autonomously nevertheless). Sometimes he could use a little help with direction, but a verbal cue or a light touch on the back usually suffices.

Not only does the constant hands-on directing stress Kiddo out, it seemed to be stressing out his brother as well. J, being the oldest, is usually Kiddo's "keeper" when the entire family is out. No 9-year-old wants to be someone's semi-permanent shadow, especially if the person doesn't really need it, which Kiddo certainly doesn't. I offered J some alternative, less restrictive ideas for helping Kiddo with direction, but I think the more coercive tactics are so ingrained that it may take a while before the new ones stick.

Also, I'm considering getting a book for him on siblings and disability/autism.

Peace.

More on the Garden

2010-03-15T09:16:00.000-07:00

Siblings

2010-03-13T08:23:00.000-08:00

Kiddo has four siblings: one older brother, two younger sisters, and a baby brother. They are all very young (the oldest is nine), and are prime for sibling rivalry. Throw in autism, and the singular spoiling Kiddo gets, and the sibling jealousy increases.

Kiddo gets a lot of things which none of his other siblings do. He gets to hang out with me almost every weekday, and they get to hear about how much fun he's had. He gets more treats and to pick his own food (for good behavior and just because he's a pickier eater), and they get to watch him indulge. He often gets extra toys and more frequent affection/attention, and he doesn't get screamed at or punished at length for behaviors such as hitting. Ask any of his siblings (minus the baby) how they feel about this, and they'll express feelings many siblings of children with disabilities have: frustration, jealousy, confusion, anger, and sadness.

So, I thought perhaps we could start taking one of the other siblings with us on our Friday outings, to gauge and work through their emotions and work on positive interactions they can have with Kiddo, as they're going to be with him a lot longer than I probably will. And also to show them that Kiddo and I may have a lot of fun, but we also do a great deal of work while we're out.

Yesterday, we went out with Kiddo's sister, R, the 5-year-old middle child. I let them take turns picking activities, and R got to choose first. She wanted to have a picnic, so we packed up some fruit in addition to my usual bag of treats, and we headed to Liberty Park.

We had a picnic, R played at the playground for a few minutes, and then Kiddo chose to "go somewhere." I decided to take them to the City Library, because Kiddo always loves it, and to show R one of the things he usually does with me. The Library's downstairs children section provided a perfect opportunity to work on their competing interests, and I soon learned how strong-headed they both are.

The children section has two playrooms: the Ice Room (which looks like an arctic cave) and the Attic (which is much bigger, has more stuff to climb on, and has lots of toys). Naturally, Kiddo loathes the Ice Room, finding it utterly dull, and gravitates heavily toward the Attic, where he can climb all over the place and find tight spaces to hang out in. Of course, likely because Kiddo hates it, R wanted to hang out in the Ice Room. So we practiced taking turns, something Kiddo and I rarely have the opportunity to do unless we're playing a game. He was at first very offended by the idea someone else was making decisions (sometimes he can hardly tolerate my own bossiness), but soon realized he got to choose activities as well and mellowed out a bit.

The City Library closes at 6pm on Fridays, something I hadn't previously realized, so we had an empty hour before the kids had to go home. I asked R what activity she wanted to do, and she asked about "Boing Boing," having heard about the place Kiddo gets to do crafts on Thursdays.

"Do they have crafts there?" she asked excitedly as I packed them into the car.

"Not today. Boing! does crafts on Thursdays. You'll probably think it is kind of boring today."

She still insisted on going, so we did. I don't hang out with verbal children very often, so it was pretty funny to hear her commentary about Boing! The first thing she said after entering the house was "Wow, this place is kind of stinky." Of course, since nothing of interest was going on, she wanted to leave. However, Kiddo loves it there, and wanted to stay. To keep in the turn-taking spirit, we stayed another fifteen minutes while sharing apple slices. Then, R asked if we could go to somewhere else, and took up my recommendation of the park around the corner.

Overall, it was a good afternoon for both of them. I pegged R with questions about her feelings concerning her brother throughout the session, and tried to provide her with some answers and affirmation. Since my youngest brother has a disability, I'm very acutely aware of the need for other siblings to feel valued and have their emotions talked about. My brother Kyle always had respite workers, and my other brother and I frequently got to tag along on their outings, which I think helped contribute to our caring, understanding, and non-resentful relationship with him.

Next week we're bringing Kiddo's older brother with us, which I'm sure will be a completely different experience.

Peace.

Steampunk Wheelchair

2010-03-10T07:50:00.000-08:00

Yep. Pretty sure my brother needs one of these.

Yes, No, Buh-Gooo!

2010-03-06T15:57:00.000-08:00

Kiddo's been moving forward so quickly these past few weeks it has been hard to keep up with him! He adores his Go Talk 4+ (still working on getting funding for the 9+) and his formerly rare, spontaneous use of the word "three, go!" has been turned into a frequently-used, all-purpose "do this for me!" phrase.

Kiddo picked up the "three, go!" thing at school last year, when people would push him on the swing they'd say "One, two, three, go!" One day, he voluntarily began picking up the last two words, though when he says them it sounds like "Buh-go!" Lately, he's been using this phrase all the time, when he wants me to open the door, pick him up, give him something. His mom told me that a few weeks ago, she turned on a Baby Mozart DVD (the only TV show Kiddo is interested in), and when the main menu came on, he began jumping up and down and yelling "Buh go! Buh go! Buh goooo!!!" until she turned it on.

However, not to my surprise or anything, his school insists that he never says "buh go."

His Go Talk 4+ currently has only four options, until we work out with his school what else to put on the device. Honestly, though, if they can't provide us with any input soon, we'll figure it out for ourselves. He has "yes," "no," "want drink" and "want snack" as choices, which means until he gets more specific slides, we have to play 20 Questions to figure out what he wants. Which is okay in a lot of ways, because he has to have an reciprocal conversation with us. ;)

The other day, we went to the Main City Library. Kiddo loves hanging out at Salt Lake City Roasting Company's little cafe by the East entrance, because they have a display of decadent cakes, although we rarely order food there. So, I figured, we'd let him order something.

I handed Kiddo the Go Talk. "Do you want something?" I asked.

"Want drink." He responded after briefly glancing at his device.

"Okay, do you want coffee?"

He looked at the device and then he looked back at me. I figured he didn't know what I was talking about. His family is LDS , so the only time he's around coffee is when non-family members are drinking it from paper cups.

"Want drink," he said again.

"Okay, do you want chocolate milk?"

He smiled. "Yes," he replied.

We sat down and he happily chugged his milk before picking the Go Talk back up and asking "Want snack."

I brought him back to the display case. There were quiches, cakes, gourmet cheeses, and other foods he's usually not too interested in. We have ordered various cakes from there several times, but they are a bit too "adult" for Kiddo's taste and he just spits it out when I give it to him.

"I don't think you like this cake, dude," I tell him, "You always spit it out. What do you want?"

"Want snack."

"Okay, do you want cake?"

"No," he presses the button as soon as the question is out of my mouth.

"Do you want quiche?"

"No."

"Do you want cheese?"

"Yes, yes, yes." He hit the button several times and pressed his face against the glass where the cheeses are.

"All right, Kiddo, let's get some cheese."

He sat down with a fat slice of cheddar and devoured it, occasionally asking me for a drink and then sipping on his chocolate milk. Kiddo and I have had these sort of exchanges for the past two weeks, and they've been very inspiring.

I also found out that the main teacher in Kiddo's self-contained special education classroom is retiring this year. Hopefully his next teacher will be easier to work with.

Peace.

Bye, Bye GoTalk 9... Hello Funding!

2010-02-23T07:45:00.001-08:00

Yesterday, Kiddo and I went back to UCAT to turn in the Go Talk 9. It was turned off, sitting on the table as one of the UCAT dudes checked it back into the computer. Kiddo seemed to recognize the place and began frantically pressing the "Stop it!" and "I want cereal" buttons. When he realized it was turned off, he flipped it over and tried to figure out how to turn in back on. It was pretty sad, but it is encouraging to know how much he values it.

The guy who was checking it in noticed him doing this and asked how it worked out. "Fabulously," I told him, before uncontrollably venting about Kiddo's school and our lack of options. I asked him some financial aid questions, and we were quickly led to the employee whose job it is to coordinate such matters. He gave me his card, and promised me once Kiddo's mama calls him, his IEP will be changed and he will have his own personal device, and definitely not a 4, but a 9+.

Sometimes bitching pays... you just have to find the right people to bitch to. :)

Peace.

Progress, Progress... Lazy School Wall

2010-02-20T17:56:00.001-08:00

Kiddo´s progress with the Go Talk has been obvious and enormous in the past few weeks, which is why it is so absolutely baffling that his school is moving so improbably slow to get a legitimate communication program going in his classroom. About two weeks ago, Kiddo´s mama and I met with his teacher to show them the Go Talk, because sending it to school with a detailed note is apparently much too indirect and vague.

Kiddo consistently and appropriately uses all but two messages on the GoTalk, ¨My name is '''¨ and ¨Thank you.¨ He understands ¨I want jellybeans/peanut butter/cereal¨ ¨I need to go to the bathroom¨ ¨Let´s listen to music¨ ¨Can I please have a book?¨ and ¨Stop it!¨(that last one he has generalized quite beautifully). His teacher was all wide-eyes and ¨I can´t believe it,¨ and enthusiastically promised they´d get a new Go Talk from UCAT which he can use more permanently. So, apparently they have a Go Talk 4 for him, though I find myself unable to perceive any logical reason for not getting a 9+, especially when he´s been doing so well with one he´s had for a month.

However, they haven´t begun using the 4 in school yet, despite having had it for nearly two weeks. Kiddo´s mom called and asked why they hadn´t sent it home if they have it, because we´ll be due to turn the 9 in soon, and they told her they hadn´t even made the picture slides yet.

Unfortunately, having nothing more than the legal title of respite care provider, I am unable to ¨pressure¨ the school into picking up the ball and getting his program going. Kiddo´s mom is unfamiliar with the law and is averse to turning into Momzilla. I am in the process of talking her into getting the school to write a new IEP, which would hopefully solve a lot of problems we have with Kiddo´s school. Also, I feel completely justified in my utter lack of patience with his teachers, because this is certainly not the first time they have demonstrated what I recognize as nothing more than inexcusable laziness.

Hmm. We´ll see what happens.

Peace.

More Garden Work Today

2010-02-14T19:42:00.000-08:00

Brunch to start the day...

Germination Station...

Best Week Ever!

2010-01-29T22:53:00.000-08:00

Okay, I cannot overstate how awesome the Go Talk has been this past week! UCAT doesn't have internet access (wtf, right?) on the computers which people can use to print Board Maker inserts, so we had to go with the standard stick-figure drawings. Kiddo is a very literal thinker and I was initially worried that the drawings would turn him off and he'd become frustrated because the visual supports we were using before (and still use for some things) are big photographs. But thankfully, they do not at all deter him from using it! The vocal feedback is incredibly motivating for him, and he can hardly put the thing down... :)

When we (hopefully) get a personal Go Talk for Kiddo, we'll be able to upload our own images to make the transition easier. Until then, however, he's doing an excellent job memorizing each message by location. I'm also thrilled that he's been using the social messages ("stop it!", "thank you") in appropriate situations.

Things just keep getting better all the time. Now to get his IEP changed (so that his school will actually use the Go Talk) and seek out funding for a personal device. I am feeling optimistic.

Peace.

GO TALK!

2010-01-23T10:26:00.000-08:00

So, we went to UCAT yesterday... and Kiddo checked out a GoTalk 9! We did not get a 9+, which is the device shown in the link, but a much older board. We recorded four messages while at UCAT, and once we handed it to Kiddo, he refused to give it to anyone without a fight.

The only two things about the older model we did not enjoy is the feedback, which can be incredibly irritating, and the somewhat complicated recording process. But after bringing the device back to his house, Kiddo's awesome 9-year-old brother helped me record eight out of the nine messages. First we recorded requests for jellybeans, cereal, peanut butter, the bathroom and music. We also recorded Kiddo's first social/conversational messages: "Stop it!" (for when his space has been invaded and he gets pissed, which happens all too frequently), "Thank you," and his name.

After making the recordings, all the other kids except the baby (Kiddo has four siblings) were given the opportunity to see how the new device works and go over some rules regarding its use. Now we just need to print some visuals for each window (and get his stubborn school on board). :)

We officially begin use on Monday, but I told Kiddo's family to let him experiment with it until we put the pictures in.

Thrilling updates in a few days!

Peace.

Lakeshore's Dumpster of Perpetual Nothingness

2010-01-18T19:40:00.000-08:00

So, lately I've been trying to dumpster dive some school supply stores in my area... to NO FREAKING AVAIL. I'm not sure whether to be proud of Lakeshore for (apparently) never throwing anything away, or supremely frustrated by their inability to provide me with free learning materials.

Swing Dancin'

2010-01-17T21:02:00.000-08:00

Kiddo is an extremely music-oriented person. Whether its Johnny Cash or Tchkung!, he is inclined to rock out to the beat... I actually can't think of any music he doesn't thoroughly enjoy, but usually the louder and harder, the better.

Justin and I went WWOOFing this last summer and stayed with the wonderful O'Quinn family. Anyhow, they are in town doing some swing dancing-related stuff and invited us to attend a free swing dancing event at Coffee Break. At first, I was going to decline because I was working with Kiddo... then I thought, "DUH!!! He loves music! Dance party!"

And a dance party we had! Kiddo really only wanted to dance with Justin, because I'm not nearly as acrobatic or groovy. :)

Social opportunities like this should never, never, never be avoided just because your kid/client is on the spectrum (or has any other exceptionality, for that matter), unless serious sensory issues may be a problem.

Another young boy was immediately drawn to Kiddo and began asking all kinds of questions about him. The 7-year-old boy was even insightful enough to say "Does he know we are talking about him? I don't want him feeling weird because I'm talking to you and not him." I showed him our visual supports book and he excitedly squealed "That's so cool! He's talking with pictures!"

Too often, parents and care providers get spooked by other kids asking about their kid's "differentness." Understandable, but in my experience their inquisitiveness always comes from a place of genuine curiosity and good intention. Answer their questions honestly... once they understand your child better, they'll usually be begging to play with them, like this kid did. :)

Peace.

The Garden (of the future)

2010-01-10T17:28:00.000-08:00

Some friends of ours have been sitting on this ginormous backyard for nearly two years now... and we all decided the other day (despite the snow, cold and our better judgment) to begin clearing the backyard for some intense gardening (and possibly chickens?) this spring. I cannot emphasize enough that this yard is HUGE, complete with two decrepit chicken coops, a garage and fruit trees.

The far back end of the yard was literally overrun by alfalfa, weeds, and what we are assuming are baby plum trees. We're keeping a selection of the plum trees, at least until we can discern their true identity with absolute certainty, but the alfalfa and weeds had to go. So for the past few days, we have been hacking, slashing, pulling and cutting what we can and throwing it onto the growing pile. Biscuit took the opportunity to find sticks.

Now that most of the alfalfa is cleared, we don't know what to do with it; its old and dead and would probably not be suitable for animal consumption. We have considered various options, and have reduced them to two: burn it or send it through a rented wood chipper. Putting it all in a metal trashcan and havin' ourselves a party has my personal vote, but Murray law doesn't seem to agree. Renting a wood chipper seems like a viable alternative, but this is also pricey and well... lame.

Either way, I'm really stoked about gardening soon! Now to talk my friends' landlord into letting them keep chickens.

Pirate teeth, musical fish bowls, and speech evaluations.

2010-01-06T08:13:00.000-08:00

Kiddo lost tooth number three over the weekend!

Now he looks kind of like a pirate! Kiddo's pediatrician told his mom that some kids with autism lose their teeth later. Interesting. The only other thing I've heard about autism and teeth is a hackish study which apparently indicates kids on the spectrum have more mercury in their teeth than neurotypical children.

Kiddo also had a speech evaluation yesterday, and he was great at showing off what he knew! He usually goofs off for people he doesn't know, but he listened to the speech therapist and did what he could for her. The therapist has recommended we go to UCAT and probe a few devices. We're going to be looking at the DynaVox V and a few lower-tech voice boxes. Now we just have to worry about that big price tag.

Also, Deseret Industries has the most delightfully random toys, such as this very amusing, incomplete, busted up, and somehow still operational musical fish bowl.

DIY Ghetto PECS, yo!

2010-01-02T17:22:00.000-08:00

It troubles me how expensive communication devices often are, especially when affordable DIY options are available.

Kiddo is pretty much completely nonverbal other than the persistent use of his all-purpose phrase "three, go!" for when he wants you to do something like pick him up, push him on a swing, or open a door.

Dumped into an understaffed, under-resourced public special ed classroom after two years of flunking Lovaas at the Carmen B. Pingree Center, Kiddo had made few gains in regards to independent communication in the past four years... until recently.

In addition to being in the nonverbal area of the autism spectrum, Kiddo has ocular albinism making visual connections even more difficult for him. Sign language went nowhere, as did attempts at getting Kiddo to be verbally expressive outside of rare delayed echolalia and "three, go!"
After working with Kiddo as a respite care provider for a few months, I was getting bored with the one-sided communication.

Many other people in his life, including his parents, regarded independent communication as something Kiddo would simply never do, and had become relatively complacent with the dismal prospect. I began pestering his mother for information on what he was doing at school, and learned that his teacher had recently gotten him to use his pointer finger, although at this point with no real purpose. Attempts to get him on the official PECS program (with the little stick figure drawings) had been unsuccessful, and some of the other people who worked with him seemed to simply stop bothering with a communication program, like he wasn’t worth the effort.

Enter "Ghetto PECS," as I've been calling our DIY visual communication program.

Like many other low-income families, Kiddo's parents have a hard time accessing expensive augmentative communication materials, and the ones he had tried didn't seem to work anyways. His parents and school staff decried his lack of compliance and attentiveness and visual problems as being too debilitating for him to learn to use an alternative system. However, Kiddo was getting very good at recognizing the food containers he wanted and either opening them himself or prompting me to open them for him. I figured, if he can identify a peanut butter jar, why not a big photo of a jar instead of a little PEC picture?

I had an incomplete set of photo cards from Stages Learning Materials and the attitude that Kiddo could learn to communicate more effectively than he had been through pulling, crying, and hitting. When I first presented him with the pictures, he grabbed the portion of the stack I wasn’t holding, angrily flinging the cards into the air before screaming and curling into a ball on the floor. “Okay then, let’s try again tomorrow,” I thought, reluctant to fall into the category of people who had previously given up on his potential.

The next day we were hanging out in my backyard after jumping on the trampoline. Kiddo was reeling from the joy of jumping and being bounced, lying on the ground and giggling to himself. I pulled out the photo cards again, put a heavy pillow on Kiddo’s chest as he lay there with his legs in the air like he was doing Pilates, and held the cards above his face. His eyes oscillated, but slowly scanned over each picture; a spoon and an apple.

“Where’s the spoon? Touch the spoon!”

Kiddo pulled his hand out from under the pillow and touched the picture of the spoon. I practically peed myself with excitement. I told him what a good job he did showing me the spoon, grabbed a photo of an airplane and switched the side the spoon picture was on.

“Touch the spoon again!”

He touched the spoon again. We went through about a quarter of the deck of 100ish photographs. For the next two weeks, I pulled the cards out every chance we got. Kiddo only knew about 10 or so of the pictures, but I was confident that he could truly identify and generalize them. Most of the photos were not of things he could relate to as easily… trucks, airplanes, bunches of flowers, etc. If we wanted to do a PECS-like program, which was my goal, we would need pictures of reinforcing foods and objects.

I used Google and Bing to find simple, clear images of foods Kiddo likes, such as bananas, oatmeal, candy, a jar of peanut butter. I probed him on several and figured out he was able to spot many of them, even in a field bigger than two.

Now to start using them like PECS. Kiddo and I already frequented Deseret Industries on toy-hunts, why not just find my own binder there? After a week of looking, we found the perfect one for two bucks: a green fabric folder with no rings, but many places to store extra photos and Velcro, which Kiddo was not immediately inclined to stim out on (he likes flipping books as a self-stimulatory behavior). We then headed to Michael’s for $2 in Velcro tape and soon had ourselves a communication binder.

I usually take photographs for his PECS now, but when I use images found online I laminate them with some laminating paper I obtained a while back. It’s kind of expensive to purchase, but you can use packing tape to get a similar result to make the pictures more durable.

So… all in all, Kiddo’s Ghetto PECS program has been extremely successful. He uses it to request food items, “going for a drive,” restroom use, baths, books for stimming out on, and most recently music. He has thirty cards, about ten of which are in frequent use. How much have I spent on this program? Eh, about ten bucks.

DIY, yo! Peace.

I Love Assistive Technology... Just Not the Price Tag

2009-12-30T21:01:00.000-08:00

My youngest brother, Kyle, cried every single day for the first six years of his life.

My mother had C-sections with myself and my other brother, Sean, due to physiological barriers preventing her from having a safe, vaginal birth. The health care institution (who I cannot legally name without potentially being sued for “libel”) who was due to deliver Kyle into this world was trying to have as many “natural births” as possible. Long story short, my mother was somewhat coerced by the all-knowing medical establishment into trying a vaginal birth instead of opting for her usual C-section (with brand new pharmaceuticals to “assist” her). Her uterus burst. Kyle didn’t get oxygen for twenty minutes and ended up with severe brain damage leading to cerebral palsy. Big lawsuit. My parents were given a substantial paycheck for damages while Kyle was provided with a generous trust fund.

The trust fund has enabled Kyle to have access to a plethora of services and materials: high quality respite care, private therapy, wheelchairs, entertainment, and most significantly his DynaVox computer.

His DynaVox is an augmentative communication device which is hooked up to a “mouse” head-switch attached to his wheelchair and allows for him to express himself with words. When Kyle finally learned how to use his device, his daily tears were reduced, his happiness and confidence soared, his reading and social abilities bloomed, and he was finally able to truly speak his mind without needing others to spell, guess, and interpret haphazard head shakes.

See a similar device in action:

Kyle’s cerebral palsy has made him unable to verbally communicate or utilize sign language/PECS. The only two ways he is able to communicate with others is through a lengthy process of literally guessing every single letter he wants to spell in order to make a sentence, or to use his Dynavox. They truly are remarkable… I’m usually such a Luddite, but Kyle’s use of an augmentative communication device has been the most empowering use of technology I’ve ever witnessed.

The problem is the jaw-dropping price tag: about $10,000 for the box, head-switch and battery. Technical repairs are thousands of dollars, and there are numerous hoops to jump through and long periods of waiting in order to get government funding. Schools are technically obligated to provide access to devices like this, but usually slack (due to red tape, work overload, absence of up-to-date information, lack of funding, or plain old staff laziness) unless an extra-dedicated parent is there to advocate for their children.

But who cares, right? Capitalism will make it all better… that is, if the capitalists see a problem. As Joe Swensen, president of DynaVox, in an interview with The Autism Life so compassionately put it: “Expensive? Who says AAC devices are expensive? We’re talking about the gift of communication! Who can put a price tag on what should be an unalienable right – the ability to communicate with a parent, a friend, a school teacher, a doctor?”

Well, Joe, this “gift” is completely out of reach for many low- to moderate-income families due to the price tag, as Joe later admits, “we know that less than 10% of the children who would benefit from a DynaVox-like device ever get a device, and for the adult population, the penetration is even worse.”

Most people with disabilities are not compensated with trust funds to alleviate the immense financial burdens their families experience when presented with the bills to therapy, medicines, and assistive devices.

The baffling monetary value associated with these devices is one of the many reasons I don’t believe in copyrights, patents, and other such protected “ownership” of ideas. Yes, I’m sure Joe Swensen needs to pay his bills… but is lining his pocket a bigger priority than constructing a machine on your own (with “stolen” information) so that a person you love can communicate without hurling you into debt?

I am positive I’m infringing on some kind of intellectual property law when I make my own PECS-style books and intervention programs for the children I work with. "Official" PECS/visual supports programs can start at around $60 and increase quickly with the person's vocabulary and need frequent replacement and maintenance. I made Kiddo's visual supports system for around $10... and if I do say so myself, the binder is way sweeter than some of the ghetto crap I've seen produced by the "real" guys. Again, what is the priority? Money for the “inventor” or affordable/free communication and greater autonomy for the person in need?

Capitalism obviously can't solve this problem, as there isn't a great enough demand for these "products" (don't you just love the deadness of that word when used to describe everything ever made?) to bring down the price. Fuck copyrights. DIY.

Think about it.

For the Love of Sponge

2009-12-18T20:58:00.000-08:00

Today Kiddo and I went to Color Me Mine to paint a ceramic plate for his family. What a wonderfully artistic, although absurdly expensive experience! Rumor has it Kiddo has never been artistically inclined, but I am now theorizing that this is due to a lack of sponge exposure. Quite tragically, I failed to capture any photographic moments of our painting adventure.

Speaking of artistic inclination, we went to Boing! for Craft Night yesterday... but Kiddo and I comprised half of the crafters. Apparently, the anarchists are on holiday. Hopefully more people will be there next time, because we're bringing paint and sponges!

Peace.

Re'd A Fuk'n Bük!

2009-12-18T20:53:00.000-08:00

My husband, Justin, and I were terribly bored last night... so we reasoned it was time to give him a tattoo right then and there. He decided an open book would be cute and simple for me to do... I'll finish it some other day by inscribing "Re'd a Fuk'n Bük" around it. :)

Peace.

Seedballz

2009-12-12T20:36:00.000-08:00

I want spring to approach so I can make these.

Living Planet Aquarium

2009-12-12T11:18:00.000-08:00

Yesterday, Kiddo and I went to the Living Planet Aquarium in Sandy. It has always perplexed me that there is an aquarium in the middle of the desert, but half of the exhibition is comprised of animals native to Utah (some of which are endangered and are part of recovery programs), which is cool. I scored tickets to the Aquarium when I donated money to my local NPR station, KCPW, and figured it would make for a decent date with my husband or a brief activity for Kiddo and I do partake in on a snowy day.

I also figured that Kiddo would have no interest in the fish tanks, and we'd spend about five minutes rushing through the majority of the aquarium before redirecting his attempts to swim in the sting ray touch pool. I was very pleasantly surprised, however, when Kiddo looked in almost every exhibit!

He had a special affinity for the endangered June sucker and the jellyfish. It was almost literally impossible to peel him away from the June sucker's tank, where he stuck his face up against the glass and observed their envious habitat for nearly
half an hour straight.

Kiddo also absolutely adored the sting ray's touch tank, though not the actual sting rays. He reached out to one but it splashed its tail and he got spooked, but he loved exploring their home. But just when he was being really good and not splashing too much, he suddenly dunked his hair in the water! Yuck! He found it extremely hysterical, but I not being quite as amused decided to take him through the exhibit again. We ended up going through three times, and he would have stayed longer had we not had to go home.

Annual passes to the Aquarium are also remarkably cheap, I discovered, only $28 if both Kiddo and I had one. I think I know what someone is getting for Christmas. :)

Peace.

What do you do with...

2009-12-09T09:41:00.001-08:00

200-300 dumpstered bagels?

Cold Days

2009-12-08T20:34:00.000-08:00

Snowy days in Utah make for pressure to act creatively, which sometimes works. Kiddo and I have been working and hanging out a lot at the downtown library, as the elevators and spiral stairs are immensely reinforcing. He's getting so good at pushing the elevator buttons! Sometimes, he tries to press the "close" button before all the people in line have gotten in... he can be impatient, haha.

The library is enormous, so we are able to work in different areas of the library when we go there. The other day, we were working on Kiddo's PECS-style communication program by the comic book section, when a young man who appeared to be in his late teens approached us. Immediately, we made eye contact and it was like I knew what he was going to say.

"Hey... I have a question."
"Yes, ask away."
"Um... is he autistic?"
"Yes, he is."
"Oh, because I have autism too!"

The dude and I talked for a few minutes about intervention and what Kiddo was learning. We were literally about to end our session and go home when he approached us... a major bummer, because I love meeting adults and teens on the spectrum and getting their perspective on things. Unfortunately, here in Salt Lake there doesn't seem to be a very vocal community of autists and aspies who advocate for themselves. I've considered trying to put together some kind of autism self-advocacy organization, but thinking about it more has made me realize that would kind of defeat the purpose, like me organizing a Brown Berets school group... sigh.

To sunnier days! Peace.

More fun at Deseret Industries...

2009-12-03T12:28:00.000-08:00

Vehicles like bikes, skateboards and scooters can be extremely intimidating for a person with proprioceptive and/or vestibular issues, which is why I was delighted to see Kiddo so enamored by this bike with training wheels at DI! He wouldn't put his feet on the pedals, but he would walk it around or let me push him. He enjoyed it so much that after we put it away, he pulled it out to try it again!

Kiddo also impressed me when he picked up a random baseball bat (missing its top, which was odd...) and held it "correctly." I found a ball and we would hit it to Kiddo's giggles when store employees weren't around to scold us. He's getting so good at pushing the cart around, too! Interestingly, the only times he really goofs off are when we stop because someone is talking to me (which is sometimes eerie in its frequency), or when we have to leave. Not wanting to leave DI is a good thing, right? :)

Playgrounds, playgrounds!

2009-12-01T17:40:00.000-08:00

Kiddo and I are always on the lookout for new parks and playgrounds to explore, especially because the mountains and many outdoorsy trails are too difficult to access with the snow. Most of our time is spent circulating the parks downtown, particularly Liberty Park and Lindsay Gardens. For the past few sessions we have been spending time at the Bella Vista Elementary playground, one of the neatest newer playgrounds I’ve seen. They have a rock climbing and rope walls, crazy slides, and an abundance of other unique equipment.

Kiddo enjoyed this playground a lot the other day; it was an awesome place to get him to try new playing apparatuses for climbing on and experimenting with. He was particularly curious about the four-person teeter-totter, but once he sat down and started using it he got a little spooked. We’ll try again a few more times; he has warmed up to a lot of new things in the past few months. He used to be rather cautious and sometimes even terrified of slides, but now he indulges in them fearlessly. Kiddo usually spends the bulk of his time on the swings when we go to parks, but Bella Vista’s has no swing set, so he is in the lovely predicament of needing to try unfamiliar activities.

Our days outside are growing short and sparse, we'll have to start investigating more indoor activities soon.

Deseret Industries: thrift store or learning expedition?

2009-11-27T15:31:00.000-08:00

There aren’t a lot of fun, free places to go in Salt Lake City, especially on a rainy day, Sunday, or with a special needs child. I have Kiddo for three-to-four hours, four days a week… and new stimulus runs out fast! I have lots of things to do at my house, but a 20 mile there-and-back drive on the freeway is frightening enough to try and stay downtown (closer to Kiddo’s house) whenever possible. The downtown Library has proved to be a good resource for entertainment, thanks to its spectacular elevator system… but we would both surely die of boredom if we had to go there every day.

An unlikely resource for free indoor activities has been the LDS-owned thrift store Mecca, Deseret Industries (DI). There are several outlets throughout the valley, and they have been excellent locations for fun, learning, and behavioral management opportunities for Kiddo.

When deciding on what type of intervention programs or learning objectives I want to develop and work on Kiddo, I start by thinking about where I hope he is when he’s an adult. It is very likely that Kiddo will be in some type of institutional care for the majority of his adult life, so it is important to help him become as independent as possible while he’s young. Having worked in group homes with autistic adults, I have seen what type of behavior will be expected of him and what skills would be good for him to develop.

It is important to Kiddo’s family and I that he is able to act appropriately in public, such as waiting calmly and politely when out with others, and therefore have the opportunity to get out and have fun when he’s older. We also want him to be able to do things like push his own grocery cart, identify and sort through everyday objects, and choose reinforcing activities for good behavior. DI has been great for all of these goals!

Usually our “DI Experience” starts with me asking Kiddo to get a cart, which he has gotten so good at! The first few times I would ask him to help with this task, he would either run away screaming or stand next to me, unsure of what to do. Now he almost always goes straight to the carts on his own, and only needs a little help pulling one out from the others.

We will do different things after this depending on his mood or what goals I have in mind to work on that day. Sometimes he’ll stand on the cart, holding onto the handles, and we’ll ride around the store “like a big kid.” He loves doing this, and because he has low muscle tone and vestibular issues, it is a wonderful, motivating physical activity. After we’ve raced around for a few minutes, I may grab some common clothing articles like shoes, shirts, and pants, holding two up at a time, and ask Kiddo to point to a certain item. We also like to practice pushing the cart straight (he likes running it into stuff). Sometimes, I’ll purchase a small item for me or something for him to play with later, and we’ll practice waiting in line (one of the hardest things for him to do), and then putting the cart away. I have taken to carrying Jellybeans in my pocket for extraordinary days “working” at DI.

DI can also provide a plethora of fun activities, as there are always new toys there. For example, the other day we spotted an enormous toy fire truck. Kiddo was very curious about it, but wasn’t sure what to do with it. I put him in the driver’s seat and we practiced using the steering wheel and making fire truck sounds because the battery in the toy was dead. He doesn’t do much verbal imitation, but he would make a quiet “reee” sound after I’d say “rrrrrreeearrr!” to imitate a fire truck. The toy was a whopping $25 I don't have, but we can always go to DI to play with it until someone finally forks over the cash!

Most of the workers at DI have gotten used to our random appearances and are super nice to us, and even help congratulate him on his good work. A few, however, particularly one grouchy old man, sometimes get weirded out by our “where’s the shoe” game and Kiddo’s screaming when he gets excited or frustrated with a task.

For a lot of parents and caregivers for children with autism or similar conditions, public places like the store can cause a lot of anxiety and embarrassment; especially if the child does things like decide to roll on the floor in the middle of the aisle, screaming as if their arm is being sawed off because they heard ‘no.’ While these situations are certainly uncomfortable, and strangers can be downright rude about their misunderstandings of the child’s behavior, it is important not to avoid them! I've taken people's judgmental glares and offhand comments as an opporutunity to educate them about autism and inclusion.

If someone is rudely staring at you or the kid you are with, don't shamefully look away or put down your head... try surprising them with a line like "I see that you're giving my child and I a perplexed look. Would you like to learn about autism spectrum disorders?" I've used this one a few times, and people always lighten up and learn something!

Again, imagine where you want the child as an adult… would you want them to behave calmly and patiently at a store? If that is a priority, then start expecting that behavior when they are a child, and offer them support and reinforcement for working on it with you. (Jellybeans, tickles, and a cheery “way to go, you did it!” are all forms of positive reinforcement).

Beware of sensory overload, however. Many people with ASD are prone to overstimulation or sensory integration problems, even from stimulus that neurotypical people don’t notice such as lights or fabrics.

So if you're in Utah, the weather sucks, and you want to take your client or child somewhere, Deseret Industries is the place to go! And you might pick up some freakin' sweet deals in the process.

Peace.

Savant skills vs Basic skills

2009-11-24T22:30:00.000-08:00

So my brother, Sean, who is currently living in Florida waiting for his Navy time to expire, just called and engaged me with an interesting autism-related question:

People with autism and with other neurological conditions often possess remarkable talents or have savant syndrome. What do you think about children who have these talents, but maybe can't talk, and then are taught to talk and lose their special abilities?

Well, the answer to this is inconsistent from individual to individual, but this is basically what I told Sean:

It all depends on quality of life. If the child has an amazing talent, yet they are unable to communicate their basic needs, the priority should be obvious: it is more important to let someone know you're hurt than play two songs on the piano at the same time. Yet a person's talents can enrich their lives in ways that maybe tying their shoes independently cannot.

Also, losing genius is not necessarily the only way to gain basic life skills: a clever teacher or parent knows to try and build on the person's organic talents to teach other skills that may not come as naturally. However, if the only way to learn basic communication or independent eating is to destroy some of that genius, I say so be it.

John Elder Robison, author of Look Me In the Eye: My Life with Asperger's describes losing some of his electrical wizardry as an older adult, while gaining more social skills. He feels that his newer ability to communicate effectively with other people is more important than the savant-like abilities he possessed as a teenager. (I'm so bad for not citing this properly, I need to check it out from the library again!)

Kiddo and PC Terminology

2009-11-24T16:13:00.000-08:00

This time last year, I was working sixty to eighty hours per week at various jobs with people on the autism spectrum. I was a respite care provider, a privately-paid intervention tutor, group home wage-slave, and teacher's aide at the Carmen B. Pingree Center. For about two years, I worked two to three of these jobs at a time, immersing myself in therapy strategies and theories, and in Salt Lake City's autism culture.

Now, for the sake of my sanity and education, I only work with "Kiddo," (name changed to protect confidentiality) an inspiring seven-year-old boy who is autistic, but like every other person should not be solely defined by his diagnostic status. I have been his respite care provider since October 2008, and he has been instrumental in defining my perspective on the condition's impact on individuals, families, and communities and the role of intervention.

This blog was created with the intention of chronicling some of my daily adventures with Kiddo, sharing interesting new articles on autism, venting about school, bragging about rad dumpstered or DI finds, discussing my life in general, and providing information and ideas for what I call "ghetto PECS intervention" (more on that later).

Readers should note that I will use terms such as "people with autism," "on the autism spectrum" and "autistic people" interchangeably. If I don't say "people with autism" I may get chewed out by PC intervention therapists, if I don't say "autistic" I may be berated by PC neurodiversity advocates. I recognize that the "correct way" to refer to such individuals is a hot-button issue for many, so I use both, with complete and utter respect as my intention.