Festivus miracles

It is the season of miracles, and we seem to be experiencing quite our fair share here. But before I qualify that statement let me say this: Georgia is exceptionally strong-willed. Hard-headed. Hard-nosed. And, yes, somewhat self-centered. She doesn't usually stray much from these adjectives, but she can also have fleeting moments of compassion, empathy, sympathy and understanding. Compromise sometimes finds a way in as well. This is Georgia pretty much all year long. Just because it's the Christmas season doesn't mean she suddenly starts behaving like a good little child, wary of incurring Santa's wrath. I'm afraid my children just missed the whole "Elf on the Shelf" phenomenon as a means to securing their sainthood, and I can't say I am sorry. Frankly that elf idea terrifies me more than the thought of Santa tallying up a rap sheet on me. No, the notion of Santa keeping tabs on her all year has never really had an effect on Georgia's attitude, nor her sisters for that matter!

                                               
This year, however, seems to have brought about a preternatural change in Georgia. Oh, sure, she displays all of the qualities I listed above, but despite those ever-present endearing characteristics, she has been exhibiting  some wondrous, and astonishing behaviors. First and foremost is the way she expressed her thoughts on the shooting rampage in Newtown. She wasn't just matter-of-fact about it, simply stating (and re-stating) to me what happened. Instead she said to me "It so sad. Those poor li'l kids. They had their whole life to live." She sat and watched some of the news reports too. In fact she's been coming around to sit on the couch with the rest of the family to watch other shows and movies. This is a rare occurrence. I really can't say how much that can be attributed to the tragedy in Connecticut, but I do wonder if she's feeling somewhat vulnerable, and the way she is able to express it is to simply sit with her family.


And as for those other miracles? These next two involve math homework. It's a nightly nightmare. Some nights are more terrifying than others, but usually it's a big serving of stress all around. One night last week Georgia was so worked up over it, she stomped off to her room sobbing uncontrollably. She calmed down a tad, then reemerged, but with a hiccoughing sob. Middle sister Maggie was sitting at the kitchen counter, turned to her and said "It's OK, Geosie. Do you need a hug?" Geosie (Maggie is the ONLY one who can get away with that nickname) went to Maggie and let her hug, pat her back (!) and coo that she would be fine. A few days later we were finishing up watching something on TV when Georgia decided it was time to start her math homework. (She waits for Brad to help her, and sometimes it gets kind of late!) Her usual M.O. is to start whining to Brad that "it's time", and when they sit down to start she instantly yells "I DON'T REMEMBER HOW TO DO IT!" Instead she quietly got her binder out, opened it up, and started solving the problems on her own. I could hear her talking herself through the steps.


About a week and a half ago Brad and I were gone all day and evening attending a funeral two states away. (My best friend from college lost her 93 year old Cajun grandma. Tough woman, but so sweet to me! And FYI: Cajuns throw damn good funeral parties!) We left Maggie in charge of helping Georgia with some homework, and fixing supper. That afternoon Georgia went to get Maggie for homework help, and found her asleep. Instead of getting upset, she made hot cocoa and brought it up to her room to help wake her up. When supper time rolled around, Georgia agreed to eat sushi rice, and try miso soup. I could fill three more pages with exclamations about that stunning phenomenon.


So now we find ourselves at what could possibly be the biggest marvel of the season: I retrieved Eldest Sister Emily from college on Monday. Before we'd even set down a suitcase Georgia was running at her, waving an invitation in her face, excitedly asking if she would like to go to the resource room Christmas party the next day. (I had to work, so couldn't go) To her great credit Emily immediately, and enthusiastically, said "YES!" Now, you must understand that historically these two have not gotten along as well as Maggie and Georgia. But the last few years have brought more maturity and insight to Emily in dealing with her littlest sister, and it's beginning to pay off. When Emily walked through the classroom door the next afternoon she reports that Georgia jumped up to hug her. They had sustained conversations! Georgia was very pleased, and proud, to have her sister there.

Jaw-dropping, yet heart-warming moments! I can only hope the new year brings more of those, and that we haven't actually been living in some sort of dream state. Don't anyone pinch me, though, just in case!

Speak for yourself!

  Georgia may be getting out of mic work today simply because I cannot string more than three words together without coughing up my spleen. I'm considering making up a turban soaked in Vicks VapoRub and wearing it EVERYWHERE until after flu season. I'd be like Professor Quirrell walking around with a smelly Voldemort on my head, only hopefully the VapoRub wouldn't be hissing orders at me to kill Harry Potter. After a few months of donning my odiferous headgear though, I imagine someone might want to do ME in!



  And speaking of things that don't smell quite right, I have only recently been made aware of some information that Autism Speaks isn't exactly the organization I believed it to be. (Shout-out to PDDWorld/Moms!) Now, this blog was never intended to be used as a forum for promoting, or bashing, any particular agency or therapy that might believe itself doing good deeds to further autism awareness, or improve the lives of those on the spectrum. But A.S. evidently has only just begun using the term "awareness", having been founded on the premise of "curing" autism by funding a ton of research to that end. They seem to be trying hard now to cover their tracks, as the autism community at large has called them on it. As I've seen on the Autism Self Advocacy Network site, ("Nothing about us, without us" http://autisticadvocacy.org/ ), it's not a cure they want, but acceptance. Being autistic is being themselves. This was echoed in an old NPR interview I dug up where a young man on the spectrum said "What the rest of the world needs to know about autism is that it's not something that can be separated out from the person, it's part of the person. And so you cannot meaningfully say I love my child, but I hate the autism. That's like saying I love my child, but I hate that she's a girl and I'd like her to be a boy instead." When asked if there were a cure for autism, would he take it, he answered "No. Never will. I love the way my brain works."


  On the A.S. site under "initiatives" they state "...In fact, many experts agree that a collaborative approach to autism research is the only way science will solve the mysteries of this devastating disorder." The definition of "devastating": 1) highly destructive or damaging. 2) causing severe shock, distress, or grief. The synonyms are destructive, and ruinous. You can see why someone on the spectrum might take exception to the A.S. approach. Now, the man in the NPR interview did state that he knows his life would be "easier without his Asperger's. He would understand social cues. He would get along better in work and everyday interactions." But he's "come to like being autistic. He even celebrates it." I know there are parents out there who might have felt shock, distress, or grief at first hearing a diagnosis of autism, but that doesn't mean the child's life, or the family unit ends in a ruinous state. For me the diagnosis was just validation, and then it was time to keep seeking out therapies which could help Georgia unlock all of her potential. I am not a shout-in-the-streets activist. I just quietly go about my business. So if Autism Speaks is shouting for a cure for autism, I will shout back in the form of not funding their research.

   A friend of mine with an Aspie son told me "You know the saying, 'If you've met one kid with autism, you've met one kid with autism.'" I do not claim to know all there is to know about autism, or every intricate detail of every advocacy group. I've done enough research to know that I don't know half of what's out there! What I do know is my child. I do know that, even though I want to help her overcome her learning problems, I do not want to help her overcome who she is at her core. She's silly, and goofy, and funny. She talks incessantly, (and obsessively!) on the way home from school. But sometimes she says the most amazing things! Yeah, sometimes she's a pain-in-the-ass, (Yep. I said it out loud.), but I usually put most of that down to being a teenager. The autism thing I can handle. This teen thing? OY VEY.

                                                                                 

                                                                         
                                                                     

                                                                       

Wheeling and dealing

 
   I've gotten fairly adept at cutting deals with Georgia for just about anything. And she's picked up my talent for it pretty well. I'm hoping the devil isn't keeping tabs, as I would not enjoy being offered a training position in his fiery corporation. Besides, I know quite a number of people who would be way better suited for the job than me. And anyway, I abhor that kind of heat! Yes, I am aware that I live in the deep South, but contrary to popular belief, it is not *typically* hotter-than-hell here. Well, with the exception of the month of August.

   Thursday afternoon I made a deal with Georgia that we could skip mic work, if she promised to make up for it on Sunday. After all, I was anxious to meet up with my LWDC peeps later (Liberal Women's Drinking Club. Whether you're a liberal, or you just drink that way, we welcome you!), I'd had a really long, tiring day of wrangling second graders, and frankly still had a cough and sore throat.(Have I mentioned I'm also good at rationalizing just about anything?) Geo hemmed a bit, then agreed, and we shook on it- but with a dangerously impish twinkle in her eyes. I said "You think I'm gonna forget by Sunday, don't you?!" I don't know how or why, but somewhere along the way I've managed to instill in my children the concrete certainty that Mommy will always forget things she is supposed to remember. Important things. They are convinced that I will forget to show up to retrieve them from school, or sign an important life-or-death form, or - heaven forbid- WASH THEIR SCHOOL CLOTHES. I honestly can't recall an event that would have imprinted this fear so indelibly on their little brains, and so I've decided to just blame it on my father-in-law, who actually DID forget to pick them up from school one time. Not my fault!          

   You will be relieved to know that I did not forget our Pact Of Procrastination! After letting Georgia have an entire morning of uninterrupted screen-time, I called to her that it was time for our mic work. She did not go quietly, but I could tell that her whole heart wasn't in the whine, and she was cracking a smile. We got right down to business. This was a difficult lesson, but she did such a great job! We went over that pesky "tion" ending, Me: Holds up card: "This is the word 'mention'. The 't-i-o-n' says 'shun'...." Georgia: Blank stare: "HUH?!" Me: "What part says 'men'?" Georgia: "m-e-n". Me: "What part says 'shun'?" Georgia: "s-h-u-n?!" Me: "No, sweetie, remember the 't-i-o-n' says 'shun'. Georgia: Looks at me like I'm insane. Me: Thinks: "Oh, yeah, this is the ever-confusing, always ridiculous English language!!" Honestly, who came up with these rules? I WAS impressed she could distinguish the sounds though, and spelled it like she HEARD IT. She did eventually catch on, after ten more words ending in "tion", and we kept our cool for the most part. The reading passage in this lesson was more challenging, and she was irritated that she had to spell so many words, but she gained a little more confidence once she read a bit from her chapter book. It's always nice when we can end a session on a positive note!

   Only two and a half more weeks of school until the Christmas break. I know because Georgia obsessively goes over this information with me every day. I'll do my best to keep on track with our Stowell work over the holiday, and Georgia will do her best to help me forget!

 

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....