Working for the Weekend

Its official. My laptop, the player I didn't know he was (so typical), picked up a nasty virus and needs to see the geek squad for some virtual penicillin. Unfortunately, that's going to have to wait until we get back home. This leaves me to bloggin' at the UCLA family room...on a shared computer...with other Mom's and Dad's that need the computer to WORK, giving me the eyeball. Well, if there's one thing I've learned in LA it's the power to ignore, typing away in my own little world of selfishness. Of course to complete the look I would need to be wearing my ridiculously uncomfortable, poor quality, but incredibly cool, classic white apple ear buds plugged into my i-pod that's playing just loud enough for everyone to hear so there's no mistake that I'm not listening to them, all the while sporting mirrored sunglasses to avoid eye contact. Throw a hoodie in the mix, hood up of course, and you have the LA uniform; uniform anonymity. I would hate to be single in the city of angels as I have no idea how anyone meets anyone here. Maybe that's why we have alcohol.

I met our new Intern on Friday and she seems nice and dare I say it, normal. I wish I would've had her from the beginning but what would've I been able to blog/bitch about over the past several weeks? She's from Seattle, Greenlake area specifically, so we talked about the PN-dub (pacific northwest) and bonded by making fun of so cal. It's the little things. Other than our shared mockery of all things plastic, I haven't had a lot of feedback/perspective from her regarding Oskar. I'll give her a few days to digest his idiosyncrasies and see if she has anything new to add. From what I've seen so far, she's my perfect, personable Izzie.

It's a short week for us at ABC. Monday was a holiday and after a three day weekend, I was ready for Oskar to get back in the program on Tuesday. I enjoy my time with Oskar, I really do, it's just hard to do it 24/7. We've had some huge gains with his ability to entertain himself, finding something that will engage him, solo, for an extended period of time but the activities are still short lived. With a city of this size, you'd think there would be a million things for us to do, and there are, but when you start adding noise, smells, and sheer volume of people, the options begin to melt away like a bad ice sculpture. I can't tell you how many times it's been suggested we go to Disneyland but even taking Oskar's sensory overload out of the equation, that's the last thing I would want to do.

Instead, on Saturday, we went to the amusement park on the pier in Santa Monica. We've been there before, on the pier, dancing around it's peripheral; checking out the drains, putting coins in the funnel, but somehow I was able to distract or come up with an excuse not to venture over to the rides. We got to San ta Monica early and it was cold for CA standards keeping the locals and the sun worshiping tourists away. The place was dead -it was our chance to run the joint! I ran to the front of the non-existent line, throwing my money at the cashier like I was somehow getting away with something and didn't want to get caught. She delicately put our wrist bands on us, Oskar standing as still as a tree, arm perched perfectly while I'm bouncing around like a crack whore feigning for a hit. I still can't believe the park is empty - this is a moment in time we can't waste. With bands on we grabbed hands and made a bee line for the biggest ride. Let the games begin.

The amusemen t park is really small; a roller coaster, ferris wheel, carousel, some kind of scrambler, various swingy things that spin fast, and a bunch of kiddy rides surrounded by your standard carny games. This was our Disneyland and for me, it was the happiest place on earth. Oskar enjoyed it too as we were able to ride the roller coaster 10 times within an hour. Each time, after the second dip on the coaster, Oskar would scream 'this is fun - let's do it again!' On our first ride, Oskar told me not to yell or raise my hands in the air (shake your body like you just don't care!) or scream (don't be a dork, Mom) but by the end, I looked over to see his arms stretched up as high as he can reach air-fiving the sky with a smile as wide as mine. Thinking of the Mastercard commercial, this was my 'priceless'.

Sunday took us to Seal Beach, then Newport Beach and finally Fashion Island. Meeting a friend from college, Heidi, we spent the day following Oskar's lead like a couple of groupies. Seal Beach was a cute town with an Irish flair. Lots of pubs with older gents sitting outside, sporting their tweed flat caps and pipes, shooting the blarney. At the beach Oskar ran full speed to the ocean crashing into a coming wave that took him and his over sized shorts out! Surprised and a bit stunned, he recovered quickly and ran back to our towel to absorb what just happened. I found a safety pin and was hoping to help him adjust his shorts to prevent any future loss. Oskar wanted no part of this, convinced I was going to poke him. After chasing him around the beach I finally persuaded him to wrap a towel around himself, take his shorts OFF, then I could pin them smaller without the offensive sharp object near his skin. My plan started off well but when he started to put his shorts back on and saw the pin in them, he hurled them away from his body like a firecracker and bolted, buck naked, down the sand. With all the flair of a matador, I swung Oskar's towel around him but lost my footing and grace for that matter, as I tackled him to the ground. Surprisingly, after an initial outburst, Oskar quickly put his shorts back ON and as I pretended to NOT look around at the public reaction, I was pleasantly surprised. There wasn't any. Of course Heidi was completely unfazed by the drama and already had our next step planned (bless her!) but the rest of the town seemed to be on the same page as well. Later I learned Seal Beach is called so not because of the cute barking mammals but because of the Navy Seal base nearby. I guess they're used to seeing action.

Heidi took us to her place in Newport and without discussion gave Oskar the best day yet of doing her laundry, walking her dogs and enjoying an outdoor mall full of escalators, fountains, and pet stores. She intuitively knew what to do without me explaining a thing. Amazing. I could use a boatload of Heidi's. I hope her PT colleagues, patients, etc., realize how good she is. Watching Heidi made me think of the therapists we have back in Bend. I think that's what I will take away most from this experience; how good we have it at home. Oskar's therapists care, are cutting edge, and above all else enjoy what they do. I have a new perspective. When I came here, I expected to be blown away with all kinds of new information and new ideas. Instead, the experts here are just as confused as the experts back home. At least we all share the same confusion conclusion. I was really hoping for some answers, some clarity, a little direction. I'm tired of riding the 'I don't know bus.' I'd like to transfer, please.

Driving back to our apartment, Oskar and I talked about how awesome watching the fireworks would be from our building's rooftop! Once we got home his awe turned into a yawn and an 'I'm pooped. Let's go to bed,' at 8:30pm. Not knowing if he'd love or hate the sights and sounds of our country's independence, I was ok with his decision to retire early. Without tv, and now Internet, I've been reading books. Real books. Fiction books. Not about Autism. Wow! I forgot what it was like to get lost in a story, hanging on every word, eagerly awaiting the next page to ignite my imagination. I started pondering the thought of canceling our cable service when I get home but then I saw a billboard for the upcoming season of Mad Men and I'm back on board the t.v. express. Damn you Don Draper!

Welcome to the Jungle Gym

The past several days have been like a roller coaster ride straight out of the Puyallup Fair; at the time seemed so big and scary but now, looking back, not such a big deal.


On Saturday, Oskar and I went to the park by our apartment. Last week he did AMAZING; very playful, focused, and engaging. This time felt more like a scene from the Exorcist sans the split pea soup. Oskar was on stimulation overload flying from playscape to playscape, not really playing with anything, barking at innocent by-standards and defending his territory like a rabid pit-bull. I was trying to implement the parenting strategy of praise the positive, ignore the negative, and set boundaries on the intolerable but he was beyond rational response. We were in full combat mode. With no response to verbal instruction, nothing to praise, and the inability to ignore his unsafe behavior, I had to grab my 55-lb son between his shoulder blades by the back of his shirt (a trick I learned from a child psychologist in Bend) and maneuver him like marionette through the playground all the while he's kicking, hitting, screaming at the top of his lungs, and trying to bite me. I know everyone's goal in LA is to get their 15 minutes of fame but playing the part of Mommy Dearest wasn't the way I wanted to earn my Warhol. I can say, without a doubt, there is nothing worse than the parental walk of shame as all eyes were on us like a spotlight following our dramatic exit. End scene.


Once we got to the apartment, I put Oskar to bed. It was about 6pm. He initially resisted but exhaustion had him in a choke hold and he quickly submitted. I wasn't far behind and welcomed the sweet seduction of slumber. Sunday started off with the same intensity but I used the force, Luke, combined with some Jedi mastery and taught Oskar how to resist the darkside. I must have successfully summoned my inner-Yoda because Oskar, 'badly did not behave!' the rest of the day. His new allegiance to all things good earned him a day at the beach including a hot dog on a stick with lemonade. Take that Princess Leia!


Monday, back at ABC, we had our parent meeting. The topic of discussion was a discharge aka 'graduation' date. George or more affectionately Jorge (use your best espanol accent) the intern asked me my thoughts of the program thus far and when I felt our last day should be. My thoughts are all over the place but back to his question, I replied that I felt we had achieved all we could as this was not the best setting for Oskar to learn and absorb what they are trying to teach and that we should leave at the end of his rotation. I still can't believe the program is designed for 5-10 yr olds. The maturity that's required I wouldn't expect to find in most typical 5-8 yr olds, which I've experienced first hand from driving Oskar and his classmates around in my car. I think most would laugh and perhaps cringe at times listening to a first grader's unfiltered dialogue chock full of family secrets, misinformation, and plain ol' gossip. It's every tabloid you can imagine wrapped in one but without the incriminating photos. So, even if they were describing their feelings, I wouldn't believe the majority of them. Newsflash, psychology department: kids lie. They embellish. That's their job. Finally, we agreed Wednesday (that's now past) would be Oskar's last day coinciding with Jorge's. Jorge is off to Chicago to practice...practice his ability not to listen, then tell you his conclusion which remarkably sounds like the information you had provided in the first place. Hasta la vista, baby.


Of course after we make this decision, Oskar had a rough day at ABC, so much so, he was limited to the floor through Wednesday. His bad days are volcanic; explosive with lots of emotional aftermath to clean up. Actually the aftermath is mine as I'm trying to figure out what caused the blow-up in the first place to prevent it in the future. Maybe what I should be doing is take a geologic approach - get my emergency kit in order knowing a storm is brewing. Instead of canned foods and bottled water, I should find a padded room and a straight jacket. Sadly, that's not far from the truth. Through observing the 'graduation' of other students, I've learned this program and all programs like it are just band-aids. The goal is to help kids get back on track, not to address the original derailment. They don't know how. When the eruptions become catastrophic, usually due to the catalyst of hormones (yeah, puberty!), the next step is full hospitalization where the teen is isolated from the masses, under full medical surveillance, to regulate his or her medication and/or behavior. So, in a nutshell, that's adolescent Autism. Can't wait.


On the bright side, Oskar has been great with me since our Sunday mind warp. He has also come around at ABC and displayed better behavior; using nice words, in control of his body, and accept no for an answer so he's received a get-out-of -jail-free car and is back on Boardwalk with the terrier and the top hat. We're still adjusting his meds but I still feel the addition of Risperidone has been positive. Through it all, he's acquired some positive skills. Oskar has consistently used appropriate greetings, i.e. 'hi, how are you?' instead of 'where are you going?' when he first encounters a stranger or on the elevator he's asked, 'what floor do you need?' instead of 'what button to push?' and definitely seen more eye contact during those interactions. He's also been more silly and imaginative, using pretend play to engage peers. All appropriate social skills we've been demonstrating for years. What's changed, allowing him to access those skills, is the medication.



Medication, MEDICATION! I love you. I hate you. I try to understand you but you're so complicated! You help but not without a price. You and your side effects. How you save one person, then destroy another. My confusion is shared, by the 'experts'. Even with all their schooling, each psychologist prescribes based on their best guess of how a drug typically effects most, most of the time. Unfortunately, the 'most' is based on adults, not children. With the race car metabolism of a child, drugs impact their system at a significantly faster rate than the economy car speed of most adults. That means faster results, shorter half-life BUT (and that's a big but) not a lot data on long-term effects. Is this synthetic oil good for a small engine? Only time will tell. I am constantly reassured that what we DO know of the drugs is that they are safe. I'm not sure what the dr's mean by safe but I can say, it is safer for Oskar to be medicated than not.


As of now, we're estimating graduation on July 12th. That will allow us time to see how Oskar is tolerating his new cocktail...increase in Respiradone, back on the Straterra...over the next several days. It will also finally get us to the geneticist so we can check that off our to do list.