Color my world

                     
   Is it possible to cough so hard that you pop a blood vessel? I think I'm about to find out. The empty Kleenex boxes are piling up like blubbery carcasses after a traditional Inuit seal hunt. To comfort, console and distract myself from this lingering cold, I'm blasting Christmas music from my Pandora "Bing Crosby Holiday" station. It's keeping me pretty distracted, seeing as how Pandora likes to toss completely obscure NON HOLIDAY songs into my very distinct HOLIDAY station. So I have to dive across the room and hit the "thumbs down" icon, effectively telling that song to "move along, you're not welcome here."


     No, it's not quite December yet, so it really shouldn't be legal to listen to Christmas tunes already. Too bad. I'm in the spirit despite my hacking cough! Brad, Emily and Georgia appear in the spirit, but Maggie is lagging a little behind this year. Not to worry, we'll infect her eventually! (with the Christmas spirit, not the stubborn cold) I'm actually pretty excited that Georgia is talking about needing to make her wish list. It's hard sometimes to guess what it is she REALLY wants. The standard gift for her, whether birthday or Christmas, seems to be multiple packs of Sharpies and reams upon reams of paper. Oh, also coloring books. Georgia ADORES coloring books. And she's got a pretty impressive coloring method. She has a thing for the color red. She goes through the pages accenting certain objects, or clothing pieces, with red first. Then she might go back through with blue, filling in other areas on each and every page. And again with the next color. Each page. One color at a time. Wash, rinse, repeat. She never just works on one page until it's complete. This fascinates me. It is a method which, in her mind, is totally logical. Here are two of her masterpieces. I *think*  they're done. (Right now she's working on the areas of a koala picture that she feels should be pink.)

     












                         

  I'm hoping that if Georgia does have coloring books on her list, we'll be able to track down at least one that she doesn't already own. It will be a challenge, but one that I'm sure we can take on! (and talk about affordable!) But what's on MY "Christmas wish list", you ask? Hmmmm....Peace on earth? Goodwill toward men? I'll settle for Peace in the Davis house, and a trip to Goodwill to see if I can find an aluminum Christmas tree!

                                                      (This here is my DREAM HOME!)
                                                     (And the dress. I want the dress too!)

There will be a quiz on this later

  I  thought it would be a good time to give a refresher course on a few things related to this blog. Namely: why I do it. Get your pencils sharpened and poised to take notes, and - as always- I believe it's good to grab a snack before travelling into my Blogdom. (That's sort of like a kingdom, only it's the realm of my blog. Although I can't say I really rule it. It's more like a puppet monarchy.)

                                                               
   This blog started so that I could keep folks informed of the wild adventures my youngest daughter and I were encountering at the Stowell Learning Center in California. I took her there in order that she might be helped to overcome her many, varied, and unusual learning delays. But aside from her learning issues, Georgia is also somewhere on the autism spectrum. Her diagnosis is considered to be PDD-NOS, which is an acronym for Pervasive Developmental Disorder-Not Otherwise Specified. Sounds pretty vague, right? Here is a link to a great definition on the Autism Speaks site: http://www.autismspeaks.org/what-autism/pdd-nos  If you don't follow that link, and read the page, you will fail the quiz later. OK, not really. If you don't read it, at least read the following paragraph that I've lifted right from the site on a description of three subgroups of PDD-NOS:

    "More helpful, perhaps, are studies suggesting that persons with PDD-NOS can be placed in one of three very different subgroups:

• A high-functioning group (around 25 percent) whose symptoms largely overlap with that of Asperger syndrome, but who differ in terms of having a lag in language development and mild cognitive impairment. (Asperger syndrome does not generally involve speech delay or cognitive impairment).

• A second group (around 25 percent) whose symptoms more closely resemble those of autistic disorder, but do not fully meet all its diagnostic signs and symptoms.

• A third group (around 50 percent) who meet all the diagnostic criteria for autistic disorder, but whose stereotypical and repetitive behaviors are noticeably mild.

As these findings suggest, individuals with PDD-NOS vary widely in their strengths and challenges."

  Georgia most definitely falls into the first category. I will admit to daydreaming at times, imagining her without all of her learning issues, the language delay, and have decided that she would probably be considered an Aspie! That wouldn't be so bad, huh? I mean, if ya gotta be on the spectrum.....

.....and that leads me to report that I recently stumbled upon a terrific resource for families with loved ones on the spectrum! It's billed as "the official social network and resource guide for Autism Speaks". It's like Facebook, but just for ASD folks! It's called My Autism Team. Go check it out: http://www.myautismteam.com/  As I've perused the site, I've seen many people lament that their extended family members just do not "get" autism, or their child's weird behaviors. We've been pretty lucky  in that regard. It has taken some folks a bit longer to "get it", but most all of our family, and friends are understanding and incredibly supportive!

  So.Over the course of the last 10 months I've talked about the ups and downs Georgia and I (and really the whole family) have gone through with our Stowell work, and life with a special-needs kid in general. I've never been on a quest to cure my child of autism. In fact I regard any treatment, therapy, or program which claims a *cure* to be nothing more than a snake oil salesman. (With apologies to any snake oil salesmen in the audience!) I do believe that with certain therapies you can help lesson your child's more troubling (or troublesome) behaviors. This can help tremendously with their self esteem, and with easing tension at home and school. But they are always going to be autistic. Georgia will always be Georgia! But I DO hope to *cure* her of dyslexia, and help her language to evolve to a higher level. And to that end, we will keep plugging along with our Stowell programs, and I'll keep dragging you all along with us! One of these days - I promise - I will try to covertly video tape Georgia reading, and post it here. One of these days - I hope - she will let me candidly video tape her reading because she's just so dang proud of herself!

...Abby-something....Abby Normal!

   Our eldest daughter Emily, who will be twenty next week, read and wrote her first word at age two. ("HOT". I still have that slip of paper....somewhere!) She began reading in earnest at age four. So when we sent her off to an all-day preschool program at our little neighborhood Catholic school, we knew she would do just fine. One evening while waiting in the hallway with the other parents for our parent-teacher conference, we all mingled and admired the artwork and writings taped to the walls. The kids had all been instructed to write the same sentence about a school bus, and then do a drawing of a bus to accompany the writing. Their names were on the back of the papers, but I knew instantly which one was Emily's, because I knew her handwriting and drawing styles. One mother noticed that a particular little writer/artist was far advanced of the others, and she said "I wonder who did THIS one?", so she peeled back the corner to reveal Emily's name. Then she turned to look at me, with a rather accusing eye, and said "Oh, you must REALLY work with her, huh?" I said "Um, no. She's just.....like that". There were some other comments by a few more parents, mainly discussion about developmental levels, and by the time we were all walking into the classroom this mom glanced over to me and said, "Huh. Well, I'm just glad my kid's normal!"

  Now, I know you aren't supposed to hold on to negative things like that, but I have never forgotten her words, or the way she said them, or her face when she uttered them. I especially think about them when I'm worried over issues with Georgia, so you can imagine I've been hearing that phrase in my head ALOT lately. Most of you might say "Oh, but what really is 'normal' anyway? NOBODY is 'normal'!" And this may be true. And I am glad of it. But I like to think of "normal" as being zero on a number line (hahaha, look at me using a math analogy! *cough*), and zero is, well, BORING. So what if my kids are -50 and 45,46?! That just means they are infinitely more interesting than normal, boring, stuck-in-the-middle zero! So although there are definitely days when I am feeling low, and wishing that Georgia could be just like her sisters, I hear those words in my head and think "Nope. My kids are awesome just as they are." We are all individuals, and my three girls all learn in very individual ways. They are UNIQUE!



   And as it happens, we discovered at our IEP meeting this morning that there is a "track" we were not aware of which is an option for *unique* kids like Georgia who don't quite fit the mold of our modern educational system. We let the team know that getting her diploma was a secondary concern. It's more important that Georgia keep moving forward at a pace which allows her to build functional skills, to be confident, to enjoy school. And then we heard the words "Graduation Certificate". Magical words. This will essentially let us pick and choose which classes will benefit Georgia, and allow whatever accommodations we need for her. (yes, BUFFET STYLE) It is not a diploma track. No, she will not get any credit towards a High School diploma. But she will be able to "graduate" with her regular class, to walk across the stage, and that is something that will be important to her. When and if we think she is ready to get a GED, then we might pursue that course. In changing to the certificate program, she will be in regular classes, but with the work modified. Her teachers will help highlight only the things they feel she really needs. She will participate in a program that helps teach basic life skills! AND, she'll be part of a group who go to lunch together and eat with typical-functioning kids to model appropriate social interactions. We plan to present these changes to her tonight. Or, as Brad says "Now we gotta sell it to Georgia!" Her schedule will change (AHHH NOT CHANGE!), but it will be for the better.

  But maybe most importantly, our homework load will lighten considerably. Which means we will have time for our Stowell work in the afternoons!!! Georgia's IEP will have to be totally rewritten, so we will meet with the team again next week to finalize and sign all the papers. And even though legally they aren't supposed to implement the changes, everyone has agreed to proceed with her new schedule as if it were a done deal. The relief I feel cannot be measured.

  I'm climbing out of that tiny, dark metal box now, and MAN is it bright out here!

Tightrope Walking

  HOLY MACKEREL what a month. The school year is underway, and we are caught in an undertow. Well, maybe it's more kin to a rip current! The jump from Middle School to High School for a student such as Georgia is like trying to leap across the Grand Canyon. You might get a few feet out from the ledge, but then you plummet straight down like an overweight, drunk Wallenda on a dare. The work load is nearly insurmountable to Georgia, and we're barely keeping her together.

  Here in Baldwin County, in the Great State of Alabama, kids must choose one of several "diploma track options". Our High School offers an IB (International Baccalaureate) track, Honors track, A/P track, Standard track, (insert another track here, haven't found out what it's labeled), and Occupational track. What they advised us at our end-of-year IEP (Individualized Education Plan) meeting was to start on the Standard track, because "you can always move down a track, but you can't move up." Since our two older girls went IB, we had absolutely NO IDEA what the Standard track entailed. But we thought "Hey, she'll have her aide, and she'll be in inclusion classes, so how bad can things be?" Uh.....bad. I'm convinced that her IEP coordinator (who is also her Lit. teacher) didn't even glance at the report from Stowell. I'm beginning to wonder if she even really thoroughly read her IEP! The pace of these "inclusion" classes is so fast that it's no wonder the drop-out rate is so high. (34% in Baldwin County last time I checked) There doesn't seem to be any concern on the part of the teachers whether the kids are getting the information or not, they just keep moving on. I understand there are standards that have to be met, material that MUST be covered in a certain time frame. But MY KID can't keep up with that time frame, and I'm certain there are others who would be considered normally functioning kids who are getting lost in the shuffle.

  In addition to her high-stress, fast-paced school day, we are spending three or four hours a night on homework, and skipping our Stowell work because of it. (I handle work for Science, Lit & the "7 Habits of a Successful Student" classes. Brad tackles math.)This is NOT productive, nor is it beneficial to Georgia in any way. When we sit down to do homework I start to feel like I've been put into a very dark, very small, metal box where every time I try to yell "THIS ISN'T WORKING", all I get is my own voice echoing back on me. No one seems to hear me! Except Brad, 'cause the lid to my box is slightly ajar so that I can gulp some oxygen occasionally. We need to fix this, to slow the pace for her, extend the time frame, to be HEARD.

  So Brad and I began mulling over, discussing, hashing out ideas on how to slow things down so that Georgia has the time she needs to actually ABSORB and process all of this information being thrown at her. We agreed that continuing with our Stowell work is the most important thing. When Brad said "How important is it that she get her diploma in 4 years?", it was like an ephiphany. Oh, my goodness. What a radical, AWESOME thought! By law she could stay in school until the age of 21. I can't imagine letting her do that, but if we look at it that way it certainly buys her more time. While chatting with several of her former Resource teachers in the last few weeks, one of them suggested "Why can't she just take TWO classes per semester, instead of four? Or have her spread out something like Algebra over the whole year?" So if we determine that getting her diploma in 4 years (or at all) is not a priority, can't we just pick and choose her classes and work load? Sort of buffet-style education!

  Of course another road to follow would be homeschooling. I have to admit that when Brad and I started delving into that idea, I initially felt lost. Then when I imagined days of setting our own schedule, doing the Stowell work every day, going over a subject until Georgia "got it"...I felt so peaceful. THINK OF IT! Days of NOT STRESSING about getting homework in on time, of NOT cramming for a test on material you barely comprehend that you end up failing anyway. A very appealing thought indeed.

  We've finally gotten a meeting set up for tomorrow morning, so all of our concerns - and ideas on how to deal with them - can be discussed. If, for whatever reason, we can't *personalize* her plan more, and keep her in the public school system, then we'll be looking into what it will take to pull her out. Or...I don't want to say we may be looking for a lawyer....but....

Not lacking in slacking

       Let me begin this posting by asking you to please conjure up all of the apologies and excuses that may have been used by countless bloggers across the millennia to rationalize why they were remiss in keeping up with their blog entries. Go ahead, I'll wait. You could try using one of  Julius Caesar's excuses. I'm sure he had some doozies. (And I'm betting he probably had pretty spotty internet connections while out invading Britain.)

   Phew! Thanks. Now let's get down to brass tacks. Georgia finished out her middle school career on a very good note. She won awards for Most Improved in Phys Ed, and Reading. We stayed dedicated to our Stowell work to the bitter end! And then summer began. And our slothdom began. I should have seen it coming, really. But I was blinded by high hopes of getting SO MUCH accomplished over the summer. Georgia was going to be utterly transformed before the start of high school! We *have* had a pretty good summer, though. Geo did a week or so of volunteering with the multiple disability summer camp,  we drove to Boston for cousin Elliot's high school graduation, and did some fun touristy things! Saw big sister Maggie off on her 10 day whirlwind trip to Japan, and enjoyed all the gifties she brought back. Georgia gets excited about things her big sisters do, like Emily getting her first job! We had old friends visit for the Glorious Fourth, swam in the river, watched fireworks. And Georgia's aide, Tracey, took her for a fun-filled day at Waterville with her youngest daughter and two other friends. So although I've struggled with terrible feelings of guilt over not whipping Georgia in to top academic form during this summer break, as the months have rolled on, I've come to terms with the fact that we JUST. NEEDED. A. REST.

   I looked back over all of my calendar pages, and lesson plans of programs that we'd worked at, and worked at, and worked at since January. And I felt better. No, Georgia didn't drop all of the weight she'd gained since stopping her meds. No, her speech is not perfect. No, she's not reading on a 9th grade level. BUT despite our lack of regular mic work and CLS this summer, she has not regressed. In fact, we sat down on the couch just to read, and she did a remarkable job. On her own she is starting to TRY to decode words before spelling them. And when it gets tough, instead of just moaning, or acting frustrated and angry at the sight of what seems to be a long, complicated word, she will calmly say "Whew, that one looks hard", and then she'll simply spell it for me, and I will give the word to her. Right now I have her reading out of 2 books at different reading levels. One is an easy 2.3 level, the other is tougher at 4.5. But she is DOING it. I have to judge what kind of a day she's having, and then decide which level might do her the most good. If she's in a good mood and things have been smooth, I'll have her read the harder book. If she needs a confidence booster, we go to the lower level book. Yesterday we sat down to do some mic work (we're on AST-Reading lesson 22), and she read the passage in the phrasing section. I was blown away at how smoothly it went! When she finished she was smiling ear-to-ear and remarked "I didn't even need you to give me hardly any words!" And it was true! She felt so good about herself. Consider the fact that she was testing on a pre-primer level back in January. Yeah. She's come quite a distance.

    School starts in just about a week and a half. Georgia seems excited about going to high school. We've had a few moments of uncertainty, a few meltdowns, but after she went through registration her emotions seemed to smooth out. We are BOTH looking forward to the routine that the regular school year affords. And she has informed me that once school starts in earnest we will have to get back to our Stowell work. She seems happy about that prospect!

    I pinky-promise that I will try to do a better job of reporting Georgia's progress in this blog. It's gonna be an interesting year!

Pondering Pachyderms

 

    
   Not counting the thirteen days of Spring Break visitors, this has been kind of a ho-hum couple of weeks. Nothing spectacular happening on either end of Georgia's emotional spectrum. A few whiny outbursts, which were quickly quelled. A few ah-ha! moments, which seemed more the maquette in this process than finished monument. Progress? More like Slogress! Blah, blah, blah. I was doing some heavy sighing, and heavier doubting. Then a ponderous stroke of understanding wormed its way into my consciousness: We've been doing this Stowell work for 12 weeks now. In pregnancy terms that's 3 months of gestation. First trimester. A lot of serious work goes on in-utero during that time. Major roads paved on the path to personhood. But a huge amount of development still has to happen before that little person joins the rest of the world. This is how I've come to see our Stowell work. When you boil it right down, we're just in the first trimester. The very beginning. A TON of little developments are happening right now, which are just the building blocks for much greater things. Things that will happen down the road we're paving right now. Provided we don't get stuck in the fresh tar!

   I really do live for those *little* developments that seemingly just pop out of nowhere. It's the best feeling to see her figuring out words that I thought would totally stump her, and assumed she'd have to spell out.  I love that when I tell her "WOW. I thought you were going to need help with that word. Awesome job!", she absolutely beams! There's no pretentiousness. We are both truly pleased. Oh there are times, when she's in an irritable mood, that she might simply roll her eyes at me. But the eye-roll is usually accompanied by a shy smile, which tells me she really does appreciate the words of encouragement. This week she was able to read the words "drink", "mother's", "pounce" (that one was thrilling because she recognized the "ou" vowel combination and went from there!) and "hunters" without missing a beat. She also knew the word "powerful" because, as she said "I remembered that 'power' is in Power Rangers!". *Ah-hem*, I guess T.V. ain't all bad.
                                                                                                                                                          Another thrilling occurrence: Georgia was actually able to fairly easily maneuver the (dreaded) Starfish exercise without ANY fussing. Have I described The Starfish before? She perches on the edge of a chair and leans back, simultaneously spreading arms and legs out while dropping head over the back of the chair. Then she essentially pulls arms, legs, head back in and scrunches into a ball, with her right arm crossed over left, and right leg over left leg. She HATES this for the simple reason that she is not comfortable with dropping her head back. (it's that darn Morrow reflex!) In fact, she doesn't even want me to use the phrase "drop your head back". I have to say "relax your neck..." This week when we finished and she stood up, I said "Hey, you didn't squawk at all. And you did that so smoothly!" She smiled and said "I know, and I feel so calm!"  GASP! The Starfish made her feel CALM? Drop everything and....oh yeah, sorry....

   So All of these bits and pieces of progress just aid in our proverbial gestation, working to propel us forward. I know that after the appropriate amount of time Georgia will be ready to go out into the world. Of course, our gestational period may more closely resemble that of the pachyderm, but I'm fine with that. As long as we don't end up looking like crazy zoo animals!

It was the best of times, it was the worst of times

    At times this week has seemed to slog and stick like so much caramel in my teeth. I hate caramel. One day would see Georgia happily cooperating (ironically, one of her vocabulary words  this week), and the next her feet firmly planted in cement. Oh, she does the work. But on the cement-planted-feet-days she would whine and fuss and growl through each session so that it seemed she wasn't getting any benefit from the work at all. After too many days of this uphill slogging, Mommy had a breakdown! We were pounding away at the AST Reading lesson where she has to repeat syllable pairs after me: "splash-clash", "batch-hatch", "snitch-snatch". She was so bent out of shape, and irritated about having to work, that she absolutely could not distinguish the different sounds. She devolved into further ickyness. Finally I threw my hands up, cut off the CD, unplugged the sound board and said "That's it. I'm done. I can't stand the whining and complaining one minute more! I cannot help you if you refuse to help too." Then I brought the hammer down. "No more screen-time for the rest of the day!!" I slammed out of the room, into my room, dove onto my bed like a pouty teenager, and thought "I. CAN. NOT. DO. THIS." Now, after the "no more screen-time" edict I fully expected to garner a complete ranting, raving lunatic-type rage. And I waited for it to begin. But it didn't. Something completely astounding happened instead. I heard Georgia talking (not raging) in her room for a few minutes, then she opened her door and called "Mommy?" I replied "In here." She came in calmly, and with a completely modulated voice said "I'd like to try again please." She climbed up on the bed and began to voice her frustrations in an almost hushed tone. She apologized. Finally after talking things out, I said "OK, I'll give it another try." Remarkably, she was able to not only breeze through each syllable pair, she could tell me what made one word vary from the other. "So, what letter changed to make "'clutch' say 'crutch'", her eyes flitted away for a minute and she said "Change the 'l' to a 'r'!" Wow. I even pushed it so far as to ask her what the vowels sounds were, and she could tell me! After we finished, we talked together about the difference it made from when she was irritated, to when she was calm. We determined that it was, in fact, better to remain calm.

     And so we had a really great afternoon session on another day, and were both remarking on it. I said "Yes! Isn't it so nice when things run smoothly and we don't have any drama? NO DRAMA! WATCH OUT FOR THE DRAMA LLAMA, IT'S SPITS!" Georgia was walking out of the room when I boomed this, but as she got into the kitchen I heard her start to giggle, and giggle, and then say to herself "Drama llama. It spits!" Then she started doing that hilarious hiccoughing, snorting giggle she does when she finds something particularly amusing. To see her gaining in maturity, self control, and growing in her sense of humor is quite something. My friend Judy recounted to me how she always made note when her kids were little of when they were particularly irritable, unmanageable or just plain pains-in-the-ass, because it usually meant that they were about to conquer another developmental milestone. I'm keeping that in mind with Georgia during all of these ups and downs, hoping the sticky caramel days mean she's morphing through into a higher developmental stage. Morphing into smooth rainbow sherbet days! I LIKE rainbow sherbet.