Monday brought another parenting and medical staff meeting. The medical staff meeting was by far more productive, this time led by the program director. Previously I was told to schedule a meeting with a geneticist to consider all possible causes for Oskar's behavior and given a name to call. Once again, George the intern with his lack of real world skills, gave me the geneticists direct number instead of the appointment desk. I explained to him it would make more sense if he a.) called the geneticist directly, did a little mono y mono with her to squeeze us in for an appointment since she doesn't know us from boo and could give a rip about Oskar's dna or b.) give me the number to the appointment desk and a script of what to ask for so we could get our foot in the door. George looked at me with his blank stare. I then suggested he have the program director call the geneticist directly since they are colleagues. All of a sudden the lights came on and George gave his boss a call. I think he finds me exhausting.
The program director leading our meeting informed me she had a call into the geneticist because 'they were colleagues' (really?) and is going to see if she can get her to squeeze us in ASAP to take advantage of our time here. She also explained they have ruled out Fragile X syndrome and while Oskar intellectually and behaviorally does not fit the profile for FAS, they are still continuing down that path because he has some facial features. I have since learned they received a grant to conduct a HUGE FAS study, so with this being their baby, they aren't quick to let it go. Your tax dollar hard at work.
I have, however, let it go. I'm not sure what facial features they are looking for but if you take a baby picture of Oskar and compare it to a baby picture of Reggie, they are interchangeable. Oskar has looked at photos of his Daddy and said, "that's Oskar, that's me!" So, now, I guess, you have been officially insulted as well, Mary, for passing on FAS 'looking' genes. I had no idea kids with FAS were so attractive! From an appearance standpoint, seems like not such a bad thing.
Tuesday leads me to a mom playdate with my new crew of bad-ass broads. We go for a mani-pedi, then lunch. I love the synergy here! With these women coming here from all over the US, they each have new and different ideas to share and the exchange of information is endless. Have you tried this? No? What about this? Yes! And then layer that with this! If anything, this trip was worth it just for networking. We feverishly grab our smartphones and start pulling up websites. One gal's on her i-phone searching for a park with an adapted playscape that ends up being within the park by our apartment. Today is a day I heart technology!
Oskar continues to do well on the medication he was prescribed. We're all amazed at how effective it is at a such a small dose but not complaining either. He is in such a better state of control with his emotions and reactions. No longer a coiled rattle snake, you can tell Oskar is comfortable in his relaxed world. We went to the park (my fellow mom found on her i-phone) and he played with another boy for at least half an hour with the boy telling him what to do and Oskar joyfully doing it! I'm not sure what this boy's background was but he was a born teacher; patient, succinct with his explanations, and quick to praise. He was a beautiful combination of maturity and playfulness as he softly gave instruction to carefully build their sand castles then together, smashed them to smithereens while they both laughed out loud. When the boy had to go, Oskar said, 'good-bye!' (one time!) instead of his usual perseveration of, 'where are you going? why?' One small step for Oskar, one giant leap for his socialization.
The next day we went to the La Brea Tar Pits. The last time I was there was when I was 12ish with my cousin, aunt, and uncle. I remembered it being so much bigger (go figure) but the smell didn't disappoint. That was right on. We go there at 4:10 and while the tar pits are public property open 24/7, the museum closes at 5. The ticket guy, my new CA BGF (sorry, Chris) worked us a smokin' deal and thankfully asked if we parked on Wilshire. We did and he gave me the 411, girlfriend, that I better move my car or it will be ticketed and towed, toot sweet! Since it took us 45 minutes to go 5 miles down Wilshire, Oskar was not thrilled with the detour and started to inform me and the museum of his displeasure. Once again my BGF saved the day by sternly but calmly telling Oskar he needed to listen to his momma or we'd be camping on the museum lawn. Oskar responded favorably and raced me to our unticked Volvo so I could move it to safer pastures. Now it's 4:30 and we blow through the museum at Oskar speed ending in the gift store buying an old skool water weinie, this one filled, appropriately, with dinosaurs.
That evening, I was on the phone late so went to bed after midnight - pumpkin time, as my mom would say! I was just settling into bed when I shot up to the deafening sound of a sliding door being forced open. Thinking it was mine, I grabbed my cell phone and dialed 9-1-1. I desparetly tried to remember our address, building name, longitute and latitute, any geographic indicator I could provide to the operator as she dispatched an officer. Now fully freaking out, my heart is tap dancing into my throat. I debate leaving the bedroom to investigate the noise I think came from the living room recognizing, I have no means for defense. Sucking it up, I go into stealth mode, slink into the living room to find my sliding glass door secured and undisturbed. The panic washes away replaced by embarrassment as I explain to my supportive operator the false alarm. It was the neighbors upstairs. Each apartment deck faces an enclosed courtyard so all voices and sounds reverberate in this mini-ampitheater distorting their direction. Thinking rationally, Spiderman would be the only likely intruder - we're on the 2nd floor. I did end up picking up some pepper spray per the advice of my former big-city friend, Nancy. Better to be safe than stuck in a spidey web.
Tuesday, June 22, 2010
Friday, June 18, 2010
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.
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.
Monday, June 14, 2010
Casa You Betcha
Today we moved into our digs and I couldn't be happier! Our new pad is exactly the pad you'd have just out of college with cream colored everything from the carpet to the walls to the vertical blinds to the leather (yes, I said leather) sofa and chair. I've learned that when you rent a furnished apartment you get all the furniture as part of you monthly charge but pay extra for linens, kitchenware, iron, vacuum, etc. All the linens are also, of course, in a neutral palette. It reminds me of Jenn's bedroom when we lived together. Seriously Jenn, to the T.
This neutral playground is perfect for the business traveler or perhaps a grad student but not so perfect for a seven year old boy. What am I saying? It is perfect. A perfect blank canvas. Within an hour of entering his new home, Oskar Jackson Pollock created an abstract masterpiece using the medium or orange juice and tar soot acquired from spilling his oj on the dust laden deck and then walking into the living room carpet with bare feet. Breathtaking. I scrubbed the snot out of the deck and then decided when it's spaghetti night, we're going to have a picnic on it! Cent' Anni!
Over the weekend we went to Santa Monica and enjoyed the beach. It was overcast but still warm. I guess this is called June gloom. Oskar was thrilled to be in sand and made multiple sand angels. He also braved the waves (COLD!) and made a sand castle. It reminded me of Long Beach, WA but warmer. We also went on the pier and checked out the amusement park. I love seeing all the locations highlighted in tv shows I watch, like the ferris wheel in Private Practice. We also checked out Beverly Hills and Rodeo Drive. Pretty Woman played in my head as Oskar and I window shopped. Once again, he was only interested in the drains but disappointed there wasn't much to drop into one. A little too clean for his taste.
This lead to a 'this is boring!' so we headed back to Westwood and found a park which we've now realized is across the street from our apartment. Strangely, there weren't many kids around but another boy came lumbering to the playscape, shoulders to his ears, fists clenched. I know that body language a mile away as it's classic Oskar. His Mom sat next to me on a bench, smiled and politely nodded. Oskar and Clencher did the magnet dance of positive and negative attraction. They SO wanted to play together and would for a moment, then bark some sort of interjection, throw sand at one another, then giggle madly as they played tag.
For an outsider, I can imagine how this looked. For me and my parallel sister on the bench, we had a private chuckle of understanding. What a great moment of solidarity, exchanging war stories and comparing notes. She was calm and optimistic. Well read and thoughtful. I enjoyed our brief connection before our boys lost interest in the park and we both moved on to entertaining our distracted duo. I hope our paths cross again.
Oskar had a rough day today at the program. He is all about instant gratification. He wants it his way or the highway and right now thank you very much! He displayed more of his typical behaviors that staff hadn't seen yet; loud verbal and physical outbursts, tantruming, personal full body slams on the floor. Hmmm....kind of sounds like Hulk Hogan. Maybe Oskar has a career in professional wrestling? I could live with that.
Tomorrow is the day of the big blood draw bright and early at 7am. The clinic is jammin' so we need to get there first thing. I hope it goes well. I am not a morning person. The last random thought I have for tonight is to mention our apartment has a fireplace which Oskar LOVES (along with the vacuum) and has turned it on many times along with the AC. Here's a photo of Oskar enjoying June in LA. I wish we had a bear skin rug and Burt Reynolds. My Aunt Colleen
would be all over that. ;)
Saturday, June 12, 2010
The Mom Squad
Thursday afternoon I met my first Mom. The power of one. Then like cell division she became two and then four. Next thing you know I'm speed dating a posse of dedicated maternal researchers trying to right the wrongs of Autism.
Mom one is all over homeopathic medicine and unloads her arsenal of herbal potions onto the coffee table in the parent room. She's also menopausal and shares her personal herbal ritual. As I'm merely dipping my toe into the recessing pool of middle age I'm listening, mildly skeptical but with a child-like hope for a happy ending. Who doesn't want Snow White to wake-up beautiful, agelesss, and with minty fresh breath? You know the Prince does.
Mom 2 is the master of the Individual Education Plan (IEP). If you have a child that has any kind of learning difference or delay, you and the educational power's that be battle it out for your child's free and appropriate education to comply with the federal mandate (Public Law 102-119, known as the Individuals with Disabilities Education Act, Part B (34 CFR Parts 300 and 301 and Appendix C). Being that appropriate is subjective and school budgets are constantly being cut, many Mom's have hired attorneys to get what their child needs and deserves. We haven't had to go there. I'm trying the 'get more bees with honey' route and have joined our school's PTA. We also live in a town of 80,000, not 8 million.
Mom 3 and 4 are new to the Autism world and thankful to be in the program. Their kids are much younger so they just got their back stage pass. Rock on.
High 5 Mom is local and amazing. She hooks me up with neighborhoods. Where I should stay, what I should pay, what to do on the weekends and more importantly, what NOT to do on the weekends. The program's social worker had printed me out a list of where to go and what to do then this Mom took out her red scripto marker and like a teacher from the 50's, corrected it - straight up! Paula Abdul would've been proud. She drew me a map from memory unlike anything you'd see on the Internet.
I've also noticed that my clan of Mom's tends to think like I do. They're no-nonsense. When it comes to describing there kid, talk about services, give their experience, honestly. The fluff is gone. It's just the facts, ma'am, which is why I love getting directions from a fellow Mom. There's no, 'Okay, so you know where Starbuck's is? Don't take a left there, you wanna go up a little further and when you see the Chinese place with the red arches, go right'.....instead it's very military. North on first street, West on Wilshire, East on Idaho...are you listening soldier?! Love it.
She also hooked me up with the allusive parking pass. Apparently, if you're child is in this program you can get a disabled placard and park in the disabled spots. Now, I have no issue speaking of Oskar and his disability but I always thought of those parking spots for someone with a physical disability who needs easier access to the sidewalks, elevators, etc. I never considered how challenging it is get Oskar onto the sidewalk or anywhere that's safe. As soon as his seat belt is off, all holds are barred and it's game time. In Bend, that's not such a big deal as there's fewer cars and the cars on the road or parking lots are the drivers are driving at a much slower pace. Here, you better have your spidey senses in place and I'd love to have that web thingy to shoot from my palm. Not only for Oskar, I think I'd just dig it. Could you imagine getting the remote? How lazy is that?!
So, now I have a disabled parking permit and I am pimping it all over greater LA. Not only do we get parking, we get premium parking! For all the things CA has done to get them in a financial hole, at least they take care of their peeps of difference. Disabled parking is a fraction of typical rates, all early intervention care, OT, PT, speech therapy, etc...FREE...until the 5 yr mark. Many of these Mom's have received 30-hrs plus per week of state paid intervention for their kiddos. Amazing. I guess the Terminator is from the future.
Friday was my day of housing relief. I finally found an apartment that's CLEAN for the same price as we are paying now for our motel room. It's pretty sterile looking but I'll take that over seeing the blackened soles of my motel feet. It's a tiny, very basic apartment, one bedroom with two twin beds. It has a decent kitchen and separate living room for $2k per month. For that amount in Bend, I'd be in a gated community. It's about half way from where we are now to UCLA but seems like a whole world away as we're off the freeway and across the street from a park. It's unbelievable what a difference a block makes. Just to give some perspective of size, when I was leasing commercial space, we tried to get (aka begged) Trader Joe's to come to Redmond (OR). They instead came to Bend - smart move - but explained even with our metro area of all Deschutes county, the population at 120k was the smallest they've entered. Here, I've seen 4 Trader Joe's within blocks of each other. Wow, that's a lot of people.
Back at the program, I met with George the intern for over an hour. He informed me Oskar will take an IQ test to assess his strengths and weaknesses and have a blood draw on Tuesday (yea!) so they can perform genetic tests. He would like to rule out Fragile X Syndrome and see if there are any other genetic abnormalities. He also explained all kids in this program are tested for Fetal Alcohol Syndrome (FAS) as kids with FAS also look like kids on the spectrum. I remember taking biology in high school and eliminating variables when conducting an experiment but being that both Fragile X and FAS typically also encompass a intellectual delay which Oskar doesn't have, doesn't that eliminate it already? Sometimes I feel like science is a huge waste of money. No wonder insurance is such a mess. Maybe they can take a sample of Oskar's hair to make sure he's a real blonde. I hope they don't need a sample from me too....
George also wanted to clarify my answers to one of the questionnaire/assessments I completed regarding Oskar's abilities. First off, I need to throw out there, as I've confided with other Mom's, that I believe how a child's disability came to be is typically not a mystery, i.e. the fruit doesn't fall far from the tree. Usually the likeness of child to parent is obvious to everyone......except the parent(s). I always think of that scene from Parenthood, when Steve Martin is ferociously scrubbing his hands under a spigot after searching for his son's retainer in the garbage questioning where his son gets his neurotic behaviors? Duh.
So, I get Oskar's stubbornness, his fierce anger, as I have it too it just takes me a lot longer to get there and doesn't happen as often. I also appreciate his distraction. If I don't have a list, I am lost. I can find a million things interesting, which is why it's taken me so long to finish this analogy. I can't take multiple choice tests to save my life! Especially tests like this where the choice of answer is 'always, sometimes, mostly, never...what's the difference between sometimes and mostly? Then to mess with you, which I'm sure the practitioner that wrote this is, there will be a question like (and this was truly a question I had to answer), 'my child is perfect in every way'. Seriously?
Beyond that, it doesn't help that I took 5 tests on the first day I arrived. My mind was like a washing machine agitating data from Oskar's first 7 yrs. (Oskar will like that simile!) Even with my 3, 5-inch binders containing records of Oskar's relentless tests, benchmarks, and therapies, I couldn't keep any of it straight.
My favorite test, though, wasn't about Oskar. It was about me. How am I? How am I feeling? Do I like to do things? Did I enjoy my last purchase? Have I given up on my hopes and dreams? Is having a child all I had imagined? Do I enjoy my friends? Do I have friends? Do I cry? Have I cried yet from taking this test? Always, sometimes, mostly, never....
Mom one is all over homeopathic medicine and unloads her arsenal of herbal potions onto the coffee table in the parent room. She's also menopausal and shares her personal herbal ritual. As I'm merely dipping my toe into the recessing pool of middle age I'm listening, mildly skeptical but with a child-like hope for a happy ending. Who doesn't want Snow White to wake-up beautiful, agelesss, and with minty fresh breath? You know the Prince does.
Mom 2 is the master of the Individual Education Plan (IEP). If you have a child that has any kind of learning difference or delay, you and the educational power's that be battle it out for your child's free and appropriate education to comply with the federal mandate (Public Law 102-119, known as the Individuals with Disabilities Education Act, Part B (34 CFR Parts 300 and 301 and Appendix C). Being that appropriate is subjective and school budgets are constantly being cut, many Mom's have hired attorneys to get what their child needs and deserves. We haven't had to go there. I'm trying the 'get more bees with honey' route and have joined our school's PTA. We also live in a town of 80,000, not 8 million.
Mom 3 and 4 are new to the Autism world and thankful to be in the program. Their kids are much younger so they just got their back stage pass. Rock on.
High 5 Mom is local and amazing. She hooks me up with neighborhoods. Where I should stay, what I should pay, what to do on the weekends and more importantly, what NOT to do on the weekends. The program's social worker had printed me out a list of where to go and what to do then this Mom took out her red scripto marker and like a teacher from the 50's, corrected it - straight up! Paula Abdul would've been proud. She drew me a map from memory unlike anything you'd see on the Internet.
I've also noticed that my clan of Mom's tends to think like I do. They're no-nonsense. When it comes to describing there kid, talk about services, give their experience, honestly. The fluff is gone. It's just the facts, ma'am, which is why I love getting directions from a fellow Mom. There's no, 'Okay, so you know where Starbuck's is? Don't take a left there, you wanna go up a little further and when you see the Chinese place with the red arches, go right'.....instead it's very military. North on first street, West on Wilshire, East on Idaho...are you listening soldier?! Love it.
She also hooked me up with the allusive parking pass. Apparently, if you're child is in this program you can get a disabled placard and park in the disabled spots. Now, I have no issue speaking of Oskar and his disability but I always thought of those parking spots for someone with a physical disability who needs easier access to the sidewalks, elevators, etc. I never considered how challenging it is get Oskar onto the sidewalk or anywhere that's safe. As soon as his seat belt is off, all holds are barred and it's game time. In Bend, that's not such a big deal as there's fewer cars and the cars on the road or parking lots are the drivers are driving at a much slower pace. Here, you better have your spidey senses in place and I'd love to have that web thingy to shoot from my palm. Not only for Oskar, I think I'd just dig it. Could you imagine getting the remote? How lazy is that?!
So, now I have a disabled parking permit and I am pimping it all over greater LA. Not only do we get parking, we get premium parking! For all the things CA has done to get them in a financial hole, at least they take care of their peeps of difference. Disabled parking is a fraction of typical rates, all early intervention care, OT, PT, speech therapy, etc...FREE...until the 5 yr mark. Many of these Mom's have received 30-hrs plus per week of state paid intervention for their kiddos. Amazing. I guess the Terminator is from the future.
Friday was my day of housing relief. I finally found an apartment that's CLEAN for the same price as we are paying now for our motel room. It's pretty sterile looking but I'll take that over seeing the blackened soles of my motel feet. It's a tiny, very basic apartment, one bedroom with two twin beds. It has a decent kitchen and separate living room for $2k per month. For that amount in Bend, I'd be in a gated community. It's about half way from where we are now to UCLA but seems like a whole world away as we're off the freeway and across the street from a park. It's unbelievable what a difference a block makes. Just to give some perspective of size, when I was leasing commercial space, we tried to get (aka begged) Trader Joe's to come to Redmond (OR). They instead came to Bend - smart move - but explained even with our metro area of all Deschutes county, the population at 120k was the smallest they've entered. Here, I've seen 4 Trader Joe's within blocks of each other. Wow, that's a lot of people.
Back at the program, I met with George the intern for over an hour. He informed me Oskar will take an IQ test to assess his strengths and weaknesses and have a blood draw on Tuesday (yea!) so they can perform genetic tests. He would like to rule out Fragile X Syndrome and see if there are any other genetic abnormalities. He also explained all kids in this program are tested for Fetal Alcohol Syndrome (FAS) as kids with FAS also look like kids on the spectrum. I remember taking biology in high school and eliminating variables when conducting an experiment but being that both Fragile X and FAS typically also encompass a intellectual delay which Oskar doesn't have, doesn't that eliminate it already? Sometimes I feel like science is a huge waste of money. No wonder insurance is such a mess. Maybe they can take a sample of Oskar's hair to make sure he's a real blonde. I hope they don't need a sample from me too....
George also wanted to clarify my answers to one of the questionnaire/assessments I completed regarding Oskar's abilities. First off, I need to throw out there, as I've confided with other Mom's, that I believe how a child's disability came to be is typically not a mystery, i.e. the fruit doesn't fall far from the tree. Usually the likeness of child to parent is obvious to everyone......except the parent(s). I always think of that scene from Parenthood, when Steve Martin is ferociously scrubbing his hands under a spigot after searching for his son's retainer in the garbage questioning where his son gets his neurotic behaviors? Duh.
So, I get Oskar's stubbornness, his fierce anger, as I have it too it just takes me a lot longer to get there and doesn't happen as often. I also appreciate his distraction. If I don't have a list, I am lost. I can find a million things interesting, which is why it's taken me so long to finish this analogy. I can't take multiple choice tests to save my life! Especially tests like this where the choice of answer is 'always, sometimes, mostly, never...what's the difference between sometimes and mostly? Then to mess with you, which I'm sure the practitioner that wrote this is, there will be a question like (and this was truly a question I had to answer), 'my child is perfect in every way'. Seriously?
Beyond that, it doesn't help that I took 5 tests on the first day I arrived. My mind was like a washing machine agitating data from Oskar's first 7 yrs. (Oskar will like that simile!) Even with my 3, 5-inch binders containing records of Oskar's relentless tests, benchmarks, and therapies, I couldn't keep any of it straight.
My favorite test, though, wasn't about Oskar. It was about me. How am I? How am I feeling? Do I like to do things? Did I enjoy my last purchase? Have I given up on my hopes and dreams? Is having a child all I had imagined? Do I enjoy my friends? Do I have friends? Do I cry? Have I cried yet from taking this test? Always, sometimes, mostly, never....
Thursday, June 10, 2010
Paging Dr. Freud
Here we are at day 2 of the blog, day 4 of the program and have made a little progress in the western portion of LA. Yesterday the ABC psychiatrist (an official DR not an intern) wrote a new script for Oskar and we had a lengthy yet productive conversation of the pros and cons of the new stimulant he recommended. I like the psychiatrist; he answers all my questions and speaks with me like a peer not a patient. I've also grown to like the psychologist intern. He reminds me of George from Grey's Anatomy. A little goofy, not great at delivering information but you know his intentions are good, he likes what he does, and like George, he has a limited role as his rounds end in a couple of weeks. Sucks to be hit by a bus.
This morning at 6 am sharp Oskar delivers a cheerful 'good morning momma!' I wish these few minutes of the day would last forever as he is so sweet when he first wakes up. O makes me coffee and powers up my laptop to play pbskids.org. I don't make a fuss because he DID make me coffee but more importantly he's eating breakfast and I'm picking my battles. After our 2-hr adventure yesterday, I drive to UCLA and we get there in 10 minutes.
Entering the neuropsychiatric hospital is exactly what you would expect it to be. The building is brick and the walls/floors are sterile white. The elevators don't indicate if they're going up or down so you have to ask the current passengers which direction they are going. Perfect irony for a mental health institution. The ABC program is on the 5th floor and when you enter the ward all the doors are locked. The door knobs must be at about 6 feet. I have to raise my arm to open one. The first thing you see is the nurses station and fortunatley, no sign of Nurse Ratched. It's an enclosed room with surrounding windows and again with all the locked doors and keys being pulled from pockets to open them, it gives me the creeps. The building is old and I recognize it's not the program, they are just working within the space they were given, but you can imagine the horrors over past decades that have occured within these walls. Can you say labatomy?
I guess that can go both ways.
Signing off and keeping out.....
This morning at 6 am sharp Oskar delivers a cheerful 'good morning momma!' I wish these few minutes of the day would last forever as he is so sweet when he first wakes up. O makes me coffee and powers up my laptop to play pbskids.org. I don't make a fuss because he DID make me coffee but more importantly he's eating breakfast and I'm picking my battles. After our 2-hr adventure yesterday, I drive to UCLA and we get there in 10 minutes.
Entering the neuropsychiatric hospital is exactly what you would expect it to be. The building is brick and the walls/floors are sterile white. The elevators don't indicate if they're going up or down so you have to ask the current passengers which direction they are going. Perfect irony for a mental health institution. The ABC program is on the 5th floor and when you enter the ward all the doors are locked. The door knobs must be at about 6 feet. I have to raise my arm to open one. The first thing you see is the nurses station and fortunatley, no sign of Nurse Ratched. It's an enclosed room with surrounding windows and again with all the locked doors and keys being pulled from pockets to open them, it gives me the creeps. The building is old and I recognize it's not the program, they are just working within the space they were given, but you can imagine the horrors over past decades that have occured within these walls. Can you say labatomy?
I guess that can go both ways.
Signing off and keeping out.....
Wednesday, June 9, 2010
Getting Settled
Per the advice/suggestion of a dear friend in Bend, I am blogging my experience in LA at the UCLA Achievement Behavior Cognition program (ABC) Oskar is attending for the next 4-6 weeks. For those of you I haven't talked with for a while, Oskar was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and PDD NOS (Pervasive Development Disorder, Not Otherwise Specified) when he was 4. Most of us are familiar with ADHD but PDD NOS is less familiar unless you live in the Autism world, which used to be an exclusive group but with 1-91 children being diagnosed daily, were becoming extremely popular and not in a good way. PDD NOS is the diagnosis you receive when the medical staff doesn't quite want to call it autism but your child is displaying some to most of the characteristics of autism spectrum disorder. So, in layman's terms, he kind of looks like a duck, talks like a duck, but doesn't walk like a duck? Perhaps a platypus? PDD NOS; the platypus of autism...and that's a shout out for all you OSU/U of O fans. A little Central Oregon humor.
We set off on our journey this past Friday driving down to LA over 3 days. I'm glad we broke the trip into chunks since Oskar asked if we were 'in California yet?' followed-up with 'I wanna go the hotel!' as we rolled into La Pine. That's about an hour from our house. These were popular questions for the next 3-hours repeated every 10-15 minutes. Throw in an occasional 'are we there yet?' and you have now experienced our general conversation for the duration of the car ride. Good times.
The next day brought us to Santa Nella about another 4-hrs south. Definitely a truck-stop town. The highlight was the outdoor pool with a ginormous frog in it. VERY exciting for all, especially the two boys trying to fish it out with the pool net as they were equally thrilled by and afraid of catching the slimy critter. One of the boys informed me the frog would give us salmonella if he didn't get it out. Very brave of him. After many attempts, they were successful and proceeded to dump the frog into the garbage (huh?) to which the clever amphibian hopped out and escaped down the courtyard. I think it heard him croak 'suck it!' as he bounced away. We also enjoyed dinner at the self proclaimed 'world famous' Pea Soup Anderson's where Oskar ate neon orange mac n' cheese (homemade!) and I had an old skool chef salad. We opted not to try the pea soup but did buy some wasabi peas in the gift store. Planned to take a photo on our way out but didn't want to lose any momentum.
Now we're fully on our way to LA which was a lot of open road. Speed limit is 55 - 70 but drivers definitely pushing the upper end of the speedometer at closer to 80 - 90 mph. Who needs the Autobahn when you have I-5? Fast is good but the conditions of the roads are not and it gets a little hairy around Grapevine. Tire carnage litters the shoulders and saw multiple drivers fixing flats a long the way. All I could think about was when the last time I visited Les Schwab and that a AAA card would be good right about now. Filing that for the ride home.
All for now....heading out to find an apartment. Hope to move by this weekend. Also hope to figure out how to post photos where I want them in the blog. Any suggestions?
Ta Ta from LA LA
We set off on our journey this past Friday driving down to LA over 3 days. I'm glad we broke the trip into chunks since Oskar asked if we were 'in California yet?' followed-up with 'I wanna go the hotel!' as we rolled into La Pine. That's about an hour from our house. These were popular questions for the next 3-hours repeated every 10-15 minutes. Throw in an occasional 'are we there yet?' and you have now experienced our general conversation for the duration of the car ride. Good times.
First stop was in Redding, clearly the strip mall/franchise haven of northern CA. All of our pre-packaged, pre-measured, and predicatable dreams were met through dinner at Applebees and a night's stay at the Baymont Inn. For kids on the spectrum, predictable is good so, I'm not complaining. On the way home, however, I am planning to stay in Weed, CA instead so I can pick up an 'I heart Weed' t-shirt. Clever Californians.
Between towns we did the standard pit stops and if there was a Subway nearby it was utilized. Once again, consistency is king. Made a few emergency bathroom stops just off an exit which made getting back on the freeway and exciting game of cat and mouse. On-ramps are short and so is the patience of the CA drivers.
The next day brought us to Santa Nella about another 4-hrs south. Definitely a truck-stop town. The highlight was the outdoor pool with a ginormous frog in it. VERY exciting for all, especially the two boys trying to fish it out with the pool net as they were equally thrilled by and afraid of catching the slimy critter. One of the boys informed me the frog would give us salmonella if he didn't get it out. Very brave of him. After many attempts, they were successful and proceeded to dump the frog into the garbage (huh?) to which the clever amphibian hopped out and escaped down the courtyard. I think it heard him croak 'suck it!' as he bounced away. We also enjoyed dinner at the self proclaimed 'world famous' Pea Soup Anderson's where Oskar ate neon orange mac n' cheese (homemade!) and I had an old skool chef salad. We opted not to try the pea soup but did buy some wasabi peas in the gift store. Planned to take a photo on our way out but didn't want to lose any momentum.
Now we're fully on our way to LA which was a lot of open road. Speed limit is 55 - 70 but drivers definitely pushing the upper end of the speedometer at closer to 80 - 90 mph. Who needs the Autobahn when you have I-5? Fast is good but the conditions of the roads are not and it gets a little hairy around Grapevine. Tire carnage litters the shoulders and saw multiple drivers fixing flats a long the way. All I could think about was when the last time I visited Les Schwab and that a AAA card would be good right about now. Filing that for the ride home.
405 was actually a breeze, especially after the horror stories I was told and made it to the hotel after a few wrong turns. I've learned there's Santa Monica Blvd and there's Santa Monica Blvd. Get it? Yeah, me too. Our hotel is about 2-mi's from UCLA so Oskar and I have walked several times. It takes me about 30 mins and us about an hour. Lots of drains, parking meters, homeless people, and newspaper boxes to explore on either the route to or from the University hospital. Monday was the first day of admissions. Lots of paperwork and meeting with staff. So far, not quite what I expected as the main point of contact is an intern who will be finishing his round in 2 weeks. I am hopeful we will receive expert services and advice as opposed to providing a lab rat for observation. I am also hopeful the intern is at the top of his class? All questions I will be posing the first part of next week when we have our 2-hr staff/parent meeting.
My agenda today is to find better housing. We are staying in a motel that is reminiscent of my first apartment on Alki. It was on Beach Drive and I think WAS a converted motel. Back then, when I was 20, I thought it was awesome! Now, not so much. It's old and dirty but it has what we need and A/C. It's cheap and the managers are nice. They have taken a shine to Oskar and that's all one can ask for.
All for now....heading out to find an apartment. Hope to move by this weekend. Also hope to figure out how to post photos where I want them in the blog. Any suggestions?
Ta Ta from LA LA
Subscribe to:
Posts (Atom)
