Tuesday Bloody Tuesday

I can't believe almost a week has passed since I've written. The good news is this week was quick in whole even though each day felt like eternity.

Bright and early on Tuesday we sped down to the lab for the infamous blood draw. It started of with some hope as Oskar assured me, 'it only hurts for a second!' and Josh Jr., the plush fish Grandma gave him before we left Bend, was going to be there to watch so 'it will be ok'. They had role played the blood draw at ABC using a doll with big blue eyes and long black eye lashes blinking open an shut as her head carelessly bobbed around. For selflessly volunteering, she earned a sponge bob band aid and many kisses on her new boo boo. I was thinking she could've used a hair brush but I'm sure fashion took a back seat for Florence Nightingale too, when necessary.

We got there just seconds before they opened and already there was a huge crowd anxious to get in. I kept looking for a Jonas Brother or something that would warrant this much activity at 7am but no dice. When we got to the reception desk, already number 72, we were able to name drop the ABC program (woot woot!) and got right in. It's not what you know it's who you know. Oh yeah. Unfortunately, my pimp swagger quickly evaporated once we walked into the lab area and Oskar took a look around. All that dress rehearsal was forgotten as stage fright hit and became the leading man. Oskar wanted to bolt. I won't lie, I was eyeballing the closest exit myself. The sight of blood makes me woozy. Knowing escape wasn't an option for either of us, I took my big girl pill, dusted off my acting chops and desperately tried to turn this room into 'the happiest place on earth!' Without Micky as my wing man Oskar wasn't buying the pixie dust and our situation quickly became a code red.

Initially we had one phlebotomist but she quickly assessed the lack of wonderland and called for back-up. Suddenly like a pit crew we were flagged into a private suite where not one but two Gaylord Fockers held Oskar down, while nurse Betty, who had the precision of a sniper, drew blood from my hysterical child. His agony was like a scene from Twilight. He was so out of sorts he probably would have preferred a vampire attack over this experience. Yet, just like a fad can come and go, so did Oskar's tears. His crying turned into bragging as he went on and on about how brave he was while stuffing his pockets with x-men stickers from the kiddie bribe prize bowl. Can I get a margarita sticker?

Wednesday was my day of meetings. The first was with the medical staff, Reggie via conference call and myself that I had been eagerly awaiting like a first date. Unfortunately, I think this date was like a match.com hook-up where the fantasy didn't 'match' the reality. I was expecting a diagnosis, an explanation of how the program will benefit Oskar, our length of stay, and what our future prognosis looks like. Instead we did the introduction dance and small talked our way through 30-mins. We did discuss tests that had been administered, would be administered, and we wouldn't have the results for several more days.

George the intern was leading the call. In the past he had confided in me that he's originally from Mexico and with English his second language, he doesn't always communicate his thoughts as articulately as he'd like. If English is his second language, I think body language is his third as he's not great at picking up on physical cues, like when my eyebrows shot to the ceiling at the suggestion of a Fetal Alcohol Syndrome (FAS) test. Being that FAS is 100% preventable, it's not something that's well received by a parent that's spent years blaming themselves for their child's current burden. Let's just throw an assumption of prenatal drinking into the mix and call it good!
After his unwelcomed data dump, I gave George a crash course on bedside manners and hopefully with my intense tutoring, he'll ace his final exam. It's good to have a psychologist that shows empathy for his patients feelings instead of crushing them. Muy bien. I do enjoy talking with George, though, just to hear his very American accent until he speaks a Hispanic name with his rolling of the rrrrrr's as thick as a machine gun. My name is Inigo Montoya.....

My next meeting was with one of the nurses to learn parenting techniques. We spent an hour confirming what Reggie and I are currently using; praising the positive, ignoring the negative, and setting boundaries for the intolerable behaviors. All is good in parentville. The challenge isn't so much the techniques but the relentless follow-through to ensure the behaviors cement themselves into the brains of our mini-me's. When you have a child with a 'rock brain' cementing something into an inflexible surface requires chipping away and rebuilding. On top of that, you better be sure you want that behavior in place because once it's in place, it's not going away anytime soon. There's no room for parenting mistakes in Autismville. Kind of like remodeling your kitchen. You better LOVE that granite.

On Thursday I shadowed Oskar for half of his day at ABC. I sat in on the community meeting where the kids participate in show-and-tell, talk about something they like or is special to them, pretty much an open forum so they can learn basic communication (back and forth) and social skills. Today I learned each child had a hand held video game except Oskar. Oskar is the youngest member of the group so I'm not saying a gaming device isn't in his future but I've read, repeatedly, that video games are not good for kids with a neurological disorder. They hyper-focus and become overstimulated which leads to anger, frustration, and outbursts. Some even have seizures.

Even with these concerns, I get why a parent would allow the gaming. It's finally something 'normal' their child enjoys and through it creates a common interest with a typical peer. Mario Bros. 3 could be the foundation to build a relationship. To have a friend. As our kids get older, you see the social chasm grow deeper and deeper especially in age of social networking. Not only can you be an outcast in person you also have the ability to be no one on-line. Talk about a double whammy. I think that's another area of autism that's severely misunderstood. Just because a child has difficulty socializing, understanding the nuances of language and communication, of tone and inflection, to joke or be sarcastic, doesn't mean they don't want to. It may appear a child with autism doesn't want to be part of the group but he or she desperately does and is painfully aware he or she isn't. As a parent, it's gut wrenching to watch so I can only imagine what it's like to be the object of the pain.

The next activity of the day is therapeutic groups which I'm not allowed to attend. I respect that, I imagine it's like an AA meeting. Private and none of my business. From there, I meet Oskar in his classroom for academic instruction taught, and I use that term loosely, by your classic Californian hippy. Reminiscent of Mr. Mackey (mmmkay?), Oskar's teacher let's the kids decide what they are going to study, when they get a break, and whether they need to finish or not. I spoke with the program director about the open teaching style and was informed Mr. Mackey will be staying in South Park next year. Super!

I ended my day in the program participating in Recreational Therapy (RT). We played a game called Dinosaur. I won't go into the details of the game but the point was to teach, negotiation, turn-taking, and above all good sportsmanship. Oskar was on my team and played for a few turns but then bolted as he found it 'too boring'. I stayed and played against another boy in the program and the Rec Therapist. I could see how hard he was working to keep his cool and to involve me in the gaming. He powered through like a champ and I gave him lots of props throughout the process. We finally had a moment of connection when I asked him if he like Bakugan. I'd spied him tightly squeezing one in his first earlier so I knew he was into them. He slowly opened his hand and showed me his prize that had beveled a deep, red impression into his palm. Then he looked at me (pretty major deal) and told me ALL about it; the battle brawlers, their universe, and each one's fantastical powers! His enthusiasm was contagious and I was sorry to have to go. I hope to learn more of this mystical, marketing masterpiece next week.

The evenings this week have been rough. We tried a new stimulant last week and found it unsuccessful. Oskar progressively became more agitated and distracted each that by Wednesday night he was so out of sorts he came home and turned the tv and portable dvd player on, each playing separate movies, and watched them both simultaneously. He started and stopped anything he attempted within minutes grunting and pacing the entire time. It was like he was in a maze and couldn't find an exit. Thank God for two buck chuck because I blew through a Hamilton. Cha-ching.

Per the dr's orders we went back to his old meds and by Friday saw a huge improvement. The staff psychiatrist also added respiradal and so far, it seems to have made a difference. Much calmer and less perserverating. Perseverating is like a skip on a record. The same thought or idea plays over and over until you pick up the metaphorical needle and set it into the next groove. Kind of like the lyrics to M/A/R/R/S, "Pump up the Volume". It's the same 4 or 5 lines played over and over again with some wailing and scratching thrown in. I am hoping dr. dj can 'put the needle on the record' because brothers and sisters, I'm ready for a new jam.