Nurse Ratched on the job!

I had a remarkable conversation last week at Lowe's Home Improvement with the young guy who came to help me figure out which lamp to buy to hang over Georgia's work desk. I explained the purpose of the lamp: that I am setting up a space to do work with my daughter, "she's got some struggles!". He nodded knowingly and said "Oh, yeah, I hear ya. My son and my nephew have some issues of their own!" That, of course, started me asking questions. Shocking, right? I'm like my mother in that I can strike up an in-depth conversation with pretty much anyone, anywhere. But, I'm also like my dad in that the oddest people seem to seek me out and talk to me. I have to do some quick assessments sometimes "Hmm, this could either turn out fun, or scary..." As it happens, my Lowe's assistant has two sons: a 6 year old in Kindergarten who is super-smart, on ADHD meds, but still struggling; and a 3 year old who is exhibiting anger for which they can find no reason. His nephew is 8, and severely autistic. He helps care for him several days a week. This guy looked SO young, but he is very obviously committed to doing right by his kids. I gave him some ideas of therapies and school programs to look into. When he described to me some of the odd behaviors his 6 year old was exhibiting on the meds, (hearing bees buzzing around his head!) it was my turn to nod knowingly. I told him Georgia had the same thing happen to her on Concerta. His eyes opened really wide, his jaw dropped, and he said almost breathlessly "I thought I was crazy! I thought my son was crazy! I've never had anyone else tell me that they had that same thing happen!" I felt like my head would explode with all of the information I wanted to impart! But it just wasn't the time or place. I was worried his boss would give him a hard time for talking with me for too long. I wondered about getting a resource packet together for him and bringing it back up to Lowe's. Maybe I will!

Our second week of Distance Learning went pretty well. Liz gave us another "step" to add: The AST Language portion. This involves using picture cards, and essentially talking or telling a story about each picture. It's covering a lot of ground: auditory processing, expressive and receptive language, visual organization, and sensory input. This is all done on the mic, along with a Samonas CD on headphones. Georgia has a really hard time blending certain sounds together. "S" is particularly difficult. She'll often leave off the beginning OR the end of a word with "S". When she was little it was kind of cute. She'd ask for a "nack" instead of "snack", that kind of thing. But at age 14, it's a bit of problem. It makes her sound so much younger, and people will glance sort of sideways at us with a look that says "What is *wrong* with that kid?" As we're going along in this lesson though, she's doing a lot more self-correction. With a prompt of "what's that *little* word we're looking for...?" ("is") She'll say "IZZZZZ!" She also just seems a lot more chatty, and personable, and not nearly as sensitive to sounds or touch. Progress. Slowly but surely.

I'm letting Geosie off the hook for mic work today, since she woke up with a stomach bug. You know, I try to be a compassionate mother. It's a little challenging for me though, since I grew up with a nurse mother and doctor father. If you weren't running a fever, didn't have any bones sticking out, and weren't having *obvious* convulsions, the standard response to illness was "Go to school! You'll feel better!" I've commiserated with other Adult Children of Medical Professionals, and they corroborate my story. I used to think school nurses must have some sort of mutated compassion gene, since they seem to exhibit a higher degree of benevolence toward sick children. But then, there is that pesky modern policy of not sending your kid to school until they've been fever and vomit-free for at least 24 hours. So maybe it's not so much a greater degree of empathy, just fear of the policy-makers that compels them to phone me when my child complains of a movable, mystery stomachache. In fact, I do remember the school nurses back in the day didn't readily call home. They tried to handle things first. They'd tell you to lie down on one of the cots with the crisp white sheets, and turn the lights low, then bustle out on their squeaky shoes to smoke a cigarette in the other room while you rested. Twenty minutes usually did the trick, (long enough to miss the quiz you forgot to study for) and then it was back to class. Ahhh, the good old days before smoking bans and the frenzied War On Bacteria! Still, I'll keep Miss G home tomorrow. If I pump her up with soup, I'm sure I can get at least *some* work out of her!

Candy cigarettes and Xanax

After getting Georgia off to a good start back at school, and a new routine, she came down with nasty cold. I kept her home Thursday and Friday, but all was not a total loss. We were actually able to complete all of our lesson plans. It made me briefly consider just keeping her home for the remainder of the year, but I know she would miss school, and she desperately needs that socialization. And we'd also probably both go bonkers after a few weeks.

I'm getting more and more familiar with the lessons, and how to conduct them. We're now three weeks into this learning adventure, and if there's one thing I've gleaned from all of these lessons it's that the English language is a bitch! It's a wonder anyone learns to speak it or write it at all. Really! Right now we're trying to get Georgia to hear, and identify vowel combinations correctly: short and long vowel sounds & what they look like, and their variations: oe, ee, oo, o_e, i_e, aw, au, .... you get the picture. Well, I skipped ahead to see what was down the road for us, and found a laminated "AST-Reading Multisyllable Guidelines" chart. HOLY MACKEREL. So after I've got her to recognize one set of rules, I basically have to tell her "Now that you've finally got those pesky little devils down, TOSS THE BUGGERS OUT!"

On Friday I began feeling like "WOW, I think I may really be able to pull this off!". But then Georgia will start to give me some attitude, and I start to get frustrated. Things have not totally unraveled yet, though. I've managed to keep my cool. But I had to kind of let her have it this morning after a particularly annoying whine-fest. In a stern, but level-headed voice (and today "level-headed" is substituting for the word "demented"), I told her I am not here to torture her, and I understand she wants to be doing other things, but this is important work. Trust me, there are a million other things I could think of I'd rather be doing. Especially when it takes up weekend time. But under no circumstances am I letting up, giving in, or aiding and abetting her ESCAPE! (cue maniacal laugh) Bribes have been instituted, and she received her first on Friday. An M&M's Candy Fan. It got me to musing about inventing a candy chill pill and marketing it to stressed-out parents. Then my mind wandered to visions of the hate mail I'd find in my inbox from the anti-drug task-forcers. Yeah, they'd pound me for sure. I mean can you even FIND candy cigarettes anymore?! But really- who are we kidding..... the *best* parental "chill pill" is Xanax.

Cakes of Llama crowd!

First day back at school = success! I had one happy girl get in the car yesterday afternoon. There were a few bumps in the day, but overall I consider it moving in the right direction. Went in for a quick meeting with Kelly, Georgia's IEP coordinator. Geo and her aide came in and joined us. It was actually good that she was there, so  Kelly could kind of back me up, and let Geo know that Mom isn't the only one who is counting on her to cooperate with all of these programs. She basically told her "I KNOW you like to have your nice, neat, set schedule. But you knew when you came back that the schedule would change so that you can fit these programs in. So do like Rafiki says in Lion King and put it in the past! It's time to move on!" Georgia thought it was pretty funny when Kelly said she'd go get a big stick if she had to, and bonk her on the nose like Simba. We worked out that I'll go up to school during her study hall hour and work on PATH reading and AST stuff. Might even be able to fit in some of the Core work.

I was reading through the instruction booklet for Samonas sound therapy, and read that over the course of this 20 week program the student should really be on a "sound diet". Not a "sound diet" as in a "good, solid diet of healthy food", but taking a break from too much extraneous NOISE. This is a difficult area for us, since Georgia is a computer and t.v. addict. And our house always seems to be "on". I thought she did well today without too much fussing when I told her we were limiting her viewing/listening time. Weekends will be harder to deal with, so we'll have to figure out how to get her out of the house. Maybe tossing her iPad into the yard and locking the door.

We've been noticing small, but nice changes with Georgia. Like tonight when we all lumped on the couches and turned on the American Idol auditions. (A guilty pleasure. Sue me. We don't like the *actual* show, just the audition part!) Our family loves (and I mean  LOVES) to play with words and their meanings. This can sometimes be a great aggravation to Georgia, as you can imagine. Per our family M.O. we proceeded to mock commercials, accents of Idol contestants, and each other. We find great satisfaction in "mis-hearing" what is being said, twisting it, and making it into something else entirely. OK, maybe I find more satisfaction than anyone else. One of my all-time favorite language morphing exercises: Maggie was stranded in the bathroom without a toilet paper refill. She shouted out to me in the kitchen "MOOOOM-MEEEE! I'M OUT OF TOILET PAPERRRRRR!" To which I replied: "WHAAAAT? YOU'RE STUCK IN THE ELEVATOR??!!" It went on like this, with me shouting back various ludicrous possibilities of what she might actually be saying. She was not amused. *I* thought it was hilarious. This is what we were doing to some of the t.v. ads tonight, and Georgia totally got it! She laughed! And a few times she repeated it to herself. After one doozie, where she did a short chuckle, I asked her "Do you get that?" And she grinned and said "Yes." and explained WHY it was a funny play on words. *sigh* Makes a Mamma proud. WHAAAAAT?? Cakes of Llama crowd?!

The smeller is the feller!

We are finally back home! It was an adventurous day of travelling. As we scanned our boarding passes, and headed down the ramp for our flight from Chino to Dallas, I was hailed back by the Keepers of The Gate to place my bag in the "overhead luggage simulator" to see if it would fit on the plane. I guess I didn't do as good a job packing this time (sorry, Ma!) because they said it appeared "too thick". As I lifted and shoved, it just made a sickening "thunk" sound and was stopped by that maddening metal frame. After trying and failing to rearrange things to make my bag skinnier, I finally threw up my hands and said "FINE, check it!". This upset Georgia greatly. She just didn't understand HOW they would get my bag back to me in Biloxi. It really did make things easier, though, not having to manhandle my bag AND Georgia's down those impossibly narrow aisles. It was bad enough that she kept whapping people in the head with her backpack as she ambled along. I'm pretty sure I made apologies to every person in a "B" seat from rows 1-20. There were a few I really should send "get well" notes to.

We eventually made it to our seats- almost all the way at the back of the plane. I reached up and tried to move the air nozzle toward the aisle, but the thing wouldn't budge. It stayed shooting directly at the top of my head, like Chinese water torture, the rest of the flight. Sitting in the back near the bathrooms on an airplane isn't really an ideal location. Especially when flying with someone who is so sensitive to smells. And also doesn't have a good grasp on social conventions. Like knowing not to say aloud what everyone else in a room is vigorously trying to ignore. After we'd all been served drinks, there was a constant stream of people heading to the toilets. One dapper gentleman was cuttin' one loose all the way down the aisle, and as the smell wafted over to Georgia she said (and by "said" I mean "yelled"...voice modulation and all that) "P.U. MOMMY! DID YOU FART?!?" I gave her the violent head-shake-while-scowling look that says (or should say) "BE QUIET! GOODLORDICAN'TBELIEVEYOUSAIDTHATOUT-LOUD!" Too late. It was out there.

On our second flight from Dallas to Gulfport-Biloxi our seats were to be one behind the other, but the young gal in Georgia's row graciously offered to switch with me when she saw the situation. (SO sweet!) Georgia was very relieved! We stowed our stuff. I reached up to adjust the air nozzle. Just the briefest of wrestling matches with *that* one. It relented- but at the expense of my thumbnail. The captain turned on the "fasten seat belt" and "no smoking" signs, so I tapped Georgia on the arm, pointed upward and said "Look, Georgia, you've GOT to put out that cigarette now!" She laughed SO hard. It was very gratifying.(Yeah, I'm really liking the Un-medicated Georgia a lot!) Ever the rule-follower, Geo snapped to attention when our flight attendant came on to give the safety spiel. She dutifully got her Safety Instruction booklet out of the chair pocket in front of her, and followed along as best she could, thoroughly studying the illustrations.

It was just such a wonderful sight to see Brad, Emily and Maggie waiting for us at the end of the day! Geo ran and hugged both of her sisters right away. Something that she normally would not do. She was all smiles and giggles. The ride home was really fun. It amazed me to hear her actually participating in the conversations. Things kind of fell apart at bedtime, though. I guess it was to be expected after an incredibly long day. She was really resistant to doing her Samonas listening, but after some struggle she finally caved and did it. The phrase "Oh, God, what have I gotten myself into?!?!" has attempted to creep to the edge of my pool of consciousness and dive in - but I keep telling it to "GET BACK!". We'll get started on our "new" schedule tomorrow. Wish me luck!

Superfund, or SuperFUN?

Simply stupendous day today! After only a smidgen of grumpiness directed toward me, Georgia got down to business. She worked especially hard, but also seemed to be in a much jollier mood. (In fact she got the giggles quite often!) I wondered if that had to do with her starting the p.m. listening track of Samonas last night, and that she slept in longer than usual. Hard to believe tomorrow is our last day at the center. What started out as a seemingly endless journey is wrapping up. Well, this two week journey is wrapping up. We still have several months stretching ahead of us in which to carry out these 4 programs. (I thought we were just doing 3 at one time, turns out it's 4) We'll be working with the Samonas Sound Therapy; PATH to Read; Core Learning Systems, and Auditory Stimulation Therapy. (Which really can be broken down into about 3 programs. AST- Language; AST- Spelling; AST -Reading). I'll have to do some pretty creative packing, since we will be hauling some sound equipment home with us. I'm thinking my ratty black clogs may just have to find their way to the Chino garbage dump. But - my mama did teach me to pack efficiently, (ROLL EVERYTHING UP TIGHT LIKE A CIGAR!), so we should be fine!

We're hoping to be able to come back in the summer, as Jill would like to reevaluate Georgia, and train me in the next programs. I'll scout out the area for any other "extended stay"-type places though. Not that this hotel was so horrible, but they've been doing renovations to the floor above us and at 7 in the A.M. the workers (who are all apparently staying AT THE HOTEL) start running floor grinders, fans, and God-knows-what-else right over our heads. It's similar noise to what I experienced while on a five day stay in the hospital during The Maggie Pregnancy. I swear they were using jackhammers up there! And then there's the small factor of it being jammed between the 71 freeway and what appears to be several desolate chunks of land up for Superfund site status.

mmmmmm....chipmunk.....

We had a really long day today. But it was productive! Things started out a bit rough when Geo tried to kick me while I watched her work with Elena. I've talked with Jill and Liz about G's attitude, and they've said that THEY will sit down with her on Friday and have a heart-to-heart. Liz has offered herself as "the bad guy" when I'm trying to get Georgia to do things she just doesn't want to do. Jill worked a lot with Georgia this afternoon, and had me do some lessons while she observed. We found out our Distance Learning Coordinator will in fact be LIZ! YAY! We'll meet Friday afternoon to talk about what equipment they'll be sending us home with, and how to use it. Technology is not my friend, but I feel better knowing I'll have support peeps!

Like I said, it was a productive day. Georgia got a movie pass last week for filling up one sticker reward sheet, and since she filled in TWO more today she earned a second pass. I let her decide on the flick, because they were her tickets. Her film choice was payback. But I have to say, Alvin and  the Chipmunks: Chipwrecked is a must-see for any over-stressed parent needing a few zzzzz's. Although  - I may have missed a few critical plot twists while "resting my eyes" sometime after the Chipmunks and Chipettes became stranded on a desert isle, engaged in mango-chasing hijinx, and then began rowing for their lives on an Alvin-made raft away from an erupting volcano. I'm not sure why "Chipwrecked" is in the title, being a play on the word "Shipwrecked", because they were not actually stranded by a wrecked ship. Their Carnival Cruise Ship (product placement is everything) merely sailed away from them after they flew overboard on a kite. No matter! Georgia enjoyed it immensely, even elbowing me once during a particularly sweet scene between....uh....a Chipmunk and....uh... another Chipmunk. (I've just *got* to learn their names. *cough*) Have I already said it was a long day?

Time to whip up some supper. Mac-n-cheese and chicken fingers! Mmmm. (I'm not sure how Georgia can be hungry after snarfing a six-dollar bag of popcorn though!) Emily sent me a picture of their meal back at home: Portabella caps stuffed with marinara, ricotta, parmesan and spinach. I think I may have to "rest my eyes" while consuming my Stouffer's, and envision portabella caps instead.

flotsam and jetsam and brains, OH, MY!

Only a few days left of our stay in Chino. I've been watching what Georgia is doing, what the teachers and therapists are doing, reading the materials, asking questions. An old friend is interested in how we're dealing with Georgia's proprioceptive issues, (her sense of where she *is* in space) and what the current research is. First, a nifty definition of proprioception:
 Proprioception ( /ˌproʊpri.ɵˈsɛpʃən/ pro-pree-o-sep-shən), from Latin proprius, meaning "one's own" and perception, is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement.^[1] It is distinguished from exteroception, by which we perceive the outside world, and interoception, by which we perceive pain, hunger, etc., and the movement of internal organs.
Along with the Samonas Sound Therapy, we're following a program of Core Learning Skills Training, which is a "series of physical balance and movement activities designed to improve visual skills, internal organization, coordination, self-awareness, self-control, and attention". Georgia has retained primitive reflexes and underdeveloped visual and motor skills which cause interference. It's thought that these Core exercises will work to eliminate that interference, thus allowing her to develop an understanding of space and time, which is "critical for developing attention awareness, and control and organization skills." A few of her exercises: The Starfish - she sits on the edge of a chair, leans back, drops her head over the back of the chair while extending her arms and legs, keeping her torso straight...like a starfish. This is incredibly hard for her to do, because of her retained Moro reflex. Something that most of us wouldn't even have to think about to be able to do it. She looks completely uncomfortable and off-balance! Another: The Robot - she lies flat on her back, arms loosely at her side, legs just a bit apart as she lifts one arm straight up, then brings it down and *gently* taps the mat twice. Then lifts the corresponding leg, brings it down and gently taps twice. It continues around clockwise, then counterclockwise three times each. THEN, she has to mix it up by doing left leg, right arm etc. There are others, but hopefully you get the picture! As far as what "current" research is saying, here are some links to a few articles I found: http://www.sciencedaily.com/releases/2004/02/040220074652.htm
http://www.sciencedaily.com/releases/2005/05/050513103548.htm

It's a daunting task ahead of us when we get home, but we'll have plenty of support via our distance-learning teacher.We'll be working on 3 programs simultaneously, trying to carve out 2 hours each day to fit in all of the activities. But it has to be done. No question.

We're not sure yet who our distance teacher will be, but I'm hoping for Liz! She has the BEST voice, and she didn't get all freaked out when I told her what it is I paint. Liz actually seemed to brighten up, asked if I had a website instead of getting that glazed, faraway look like most people do when I tell them I paint brains (and lungs, and intestines, and uteruses...or uteri...I had this debate with Margaret, now I can't remember how it turned out!), and wanted details of my subject matter. I told her "Alot of people say 'Oh, doctor's offices would LOVE your stuff'', but who wants to be sitting in a waiting room, anxious about your diagnosis, staring at a freaky brain floating around with a bunch of flotsam and jetsam bumping into it!" She gave a big laugh, and concurred!