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.

                                                                                 

                                                                         
                                                                     

                                                                       

...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!

Transcendent reactions

Successful navigation out of near-total meltdown yesterday. Georgia was complaining bitterly about having to do CLS (Core Learning Skills training) a.k.a.: THE DREADED EXCERCISES! As I was trying to explain to her why these are so important, she just simply began to dissolve into a blubbering, anxiety-ridden mess. I got her to sit down and breathe. Then I reached across the table to hold her hands, (she let me!) and had her try to verbalize what was getting her so worked-up. Here is what was gleaned: Georgia is tired of "being dyslexia", (which is not entirely unlike "Being Jonn Malkovich" I imagine), and wishes she were "Just like Emily! Why can't I be like Emily. She not dyslexia!" She has also heard that there aren't aids or special classrooms for kids who struggle at the High School, and so is terrified of being unceremoniously dumped into a "regular" classroom with no support whatsoever next year. I told her that would not happen, that Daddy and I will meet with the school in the next few months, and work all of this out. She's worried that if I come up to work with her at the High School, people will notice, and she will be seen as "different". She cried, "WHY am I diff'rent? I'm TIRED of being diff'rent than everyone else!" Ugh. This just broke my heart. I wanted to say to her that one reason we're doing these programs with Stowell is so that she WILL seem less "different"....but I felt that was a terrible thing to voice. Georgia is such an interesting girl! She's got a great sense of humor! She's insightful! So I told her that all this is to help her feel more confident, and secure, so that maybe one day she CAN help herself in the classroom. "It's going to take a few more years, and you have to be patient. It's going to take A LOT more hard work, and you have to be willing. Can you be patient? Are you willing?" We shook on it. She wiped her tears, blew her nose, and got down to work with a smile.

                                                                           
Amazingly we are at the end of our Phonics Actives program. But even though we've gotten through all of the lessons this doesn't mean we can't, or shouldn't do them anymore. I fully intend to keep going over older lessons, but right now I think more energy can be spent on AST-Reading. It seems to be taking us a bit longer to make it through each step in this first lesson. Georgia is doing pretty well, and even though I worry over whether her speech will ever be totally smooth, or her reading on grade-level, I do think she's making progress. I just have to keep in mind the larger picture. We've only been at this a few months. In the words of the nineteenth century transcendentalist Robert Frost: "But I have promises to keep, and miles to go before I sleep, and miles to go before I sleep."Or maybe I should follow those immortal words spoken by the transcendent Dorie The Fish: "Just keep swimming! Just keep swimming! Just keep swimming, swimming, swimming!"


 Bob, meet Dorie......

Hormonal Hydra

Whoa. The weeks are just flying by. We've gotten into a good routine with our Stowell work schedule, and so I have taken a full day sub job for the 17th. Georgia is not happy about it since it means I won't be coming up to school to work with her in the morning. She's worried we won't be able to get everything done! I told her it's a Friday, so we can move things around a bit, and not to fret. But as Brad said "One thing about Georgia....even if she dislikes doing a lesson, she dislikes not doing it more." If you know Georgia you understand that she is a creature of habit, lover of sameness. So I'm trying not to disturb our new routine too much. Some details of her schedule do change from week-to-week, though. For instance, the first few weeks she listened to her Samonas CD for 15 minutes, twice a day. Last week Liz changed that protocol, moving us onto another CD, and 30 minutes of listening in the morning before Georgia gets out of bed. This was working out really well until Monday dawned this week, and Georgia spawned another head. And fangs. I was noticing that she appeared to be modulating her voice much better, and seemed calmer. But then -BAM - hello Hydra! She is 14, however, so I suppose hormones could be blamed. Oy vey!

It's times like this I have to try really, really, REALLY hard to remind myself that all of this hassle is for a greater good. As Teddy Roosevelt said: "Nothing worth having was ever achieved without effort." But he also said: "If you could kick the person in the pants responsible for all your trouble, you wouldn't sit for a month!" I think that pretty much sums up my frame of mind. So it helps when there are glimmers of positive steps forward. Like when Georgia will announce some bit of knowledge, or speak a thought in a complete phrase. It's even inspiring to me when she says something sarcastic, and understands what she's saying is funny. The other day we were driving to school and I was lecturing Maggie about God-knows-what. I said "Well, I hate to say I told you so..." and without missing a beat Georgia says in a deadpan voice "You already did." I even loved it when she proclaimed of our sleepy, fat, psycho kitty, (after he'd killed and dismembered a very large bird in the kitchen) "Oh, look at him! He looks so innocent of such a crime!" I heard a distinctive "S" at the end of "looks", and she meticulously pronounced "in-no-cent". Plus I just really enjoyed the entire phrasing she used, it made me chuckle!

I know that each week is likely to be different from the last. And that's not necessarily a bad thing. Especially if we can mark progress being made! But it would be nice to know ahead of time if I'll be packing a lunch for Hydra, or Harmonia.