5/25/11

Yeah, I should have known that was a bad plan.

Dixie had a tooth extracted this afternoon and has been sleeping it off. I had an allergist/ENT appointment because my sinuses are all jacked up* and I have oozing blisters on the bottom of my feet from field day yesterday, so I've been sleeping it off.


Dowlan took Melody and Charlie to church, leaving us a quiet house so that we may sleep it off together.



I got up to go to the bathroom, only to discover that Dixie cooked. Ingredients: a box of red Jell-o, four packets of Sweet-N-Low, some of my lip gloss, enough Crystal Light to make 6 quarts, chocolate Nestle Quik powder, peanut butter, water and three ice cubes.

She generously offered me a glass (after recovering from the 'uh-oh' look) which I politely declined. "I'm sure it's delightful, but sinus headaches make me want to throw up."

She poured a glass for herself, looked in it, and declared her sinuses were also hurting.




*Important medical term

5/22/11

The Piggy Bank

A few days before Spring Break, I went to Michael's and loaded up on craft projects. We had suncatchers, beads and ceramic things to use permanent markers on. The biggest hit was the small piggy bank.

Charlie's, surprisingly, was a very green little piggy.

As they were coloring them, I gave them each a few pennies to put in their banks. Charlie, not completely realizing that each child had their own, generously told Melody, "I take you pennies. I put dem in my piggybank. I keep them safe fo you and share dem wit you."

Melody was indignant, but we talked her down.

Since then, the piggy bank has been a major thing for Charlie. Since one of his great joys in life is a Happy Meal, he frequently talks about how, "I'm gunna fill up my piggy bank all da way to da top, den go to McDonald's and get a Happy Meal and play wif da toy and even get ice cweam. Den, if I don't like da toy, you can take me to da store and I can get anudder one."

Sure thing, kid. He knows I'd never buy him a Happy Meal, ice cream and toy all in one day, so he's on his own.

When his school had a book fair, he was going to take his piggy bank and buy all the books 'wif cars in dem'. As it was, Dowlan took him (sans piggy bank) and bought him what has to be the ultimate in Charlie joys--a Hot Wheels book where they race through a volcano. The green car in the book is a car that he actually has AND wins the race. It doesn't get much better than that in his world.

(He reads this book at least ten times a day. If he doesn't know where it is, he makes you draw the pictures and tell him the words that should be on the page. It's really fun to be driving with him looking through the book in the backseat, saying, "NO! Read da words dat I'm looking at!" when you can't see the page. He also makes you read every word on the front and back cover, inside cover and title page. Dowlan, smart man that he is, has written Charlie's full name, address and phone number in this book. He hopes that the endless repetition will help him learn those things. So far, all we have is that Charlie will tell you, "M is my middle initial.")

Wanting money is something we've used to our advantage. He won't normally go to the bathroom without company, so we pay him off for going alone. We also give him a few cents for being a helper or eating something that's not green. It has its drawbacks, though. Last Sunday, he did NOT want to put the quarter I handed him into the offering plate. The entire church got to hear, "God does not NEED da quarter. My piggybank needs it more!"

Recently, Charlie has decided that stealing sips of my Diet Coke and Dowlan's Mountain Dew is simply not enough and he has been campaigning for his own Mountain Dew.

Charlie: I NEED da Mountain Dew.
Dowlan: Sorry, Charlie, but we can't have Mountain Dew. It's not for little guys.
C: But I'm a big character. And my big character needs a Mountain Dew.
D: We don't even have any Mountain Dew right now.
C: Den make some.
D: I can't make Mountain Dew. They make it in a factory.
C: Den I'll use da money in my piggy bank and buy a factory and have some Mountain Dew.

To quote Charlotte, that's some pig.

5/16/11

See, here's the problem

My netbook is having issues. The keys A S D F J K L and ENTER do nothing, 90% of the time. When they DO do something, they issue a long string of characters. So, if I type the sentence 'We wanted pizza for dinner, but I was cheap and cooked instead' I get either 'We wnte pizz or innr, but i w chep n cooe inte' or 'We waaaaaaantedddddddd pizzaaaaaaaaa ffffffffffffor ddddddddddddinneeeeeeeeeer, but i waaaaaaaaasssssss cheaaaaaaaaap aaaaaaaanddd cookkkkkkedddddddd insteaaaaaaaaaddddddd.'

Or some combination of the two. And sometimes, no amount of pressing down for a long time makes a letter appear and so I type out the frame of my sentence, find the letters somewhere else, then copy/paste them into the space.

As a result, a basic sentence takes about two minutes. Logging into my bank account is grueling. Typing a facebook status is marginally doable, except that the enter key is pretty well needed to get my words out there into the ether. An email response has to be a dedicated cause and a blog entry is herculean.

Except that, well, some days the whole thing works perfectly fine.

I assure you that we are all still alive and well. With nine days of school left, it feels like we're on a big roller coaster ride to the finish.

The only major change we've got going is that we've reintroduced gluten into Charlie's diet. We were finding diminished returns from the effort and it was costing as much to feed one child as the rest of the family. I hate to say we gave up a child's therapy because we could not afford it, but that's it in a nutshell. We could afford either continued diet or continued speech/OT and we were getting so much more out of the others.

Not to mention that the kid is a peanut to begin with (He's almost 5 and only weighs 30 lbs, even less than Melody weighed at this age) and had begun refusing many of the GF alternatives available. It had gotten to the point that the kid was clearly hungry, but would not eat the food that was there.

We have had some resurgence in repetitive behaviors and impulses. It's not as drastic as I'd feared--remember that he did not become effectively communicative until the diet was introduced--but we have had to go back and refocus on some things that we thought were behind us, such as potty training.

I'm not entirely comfortable with the decision, but am keeping in mind that we can always go back at some future date when we're no longer faced with the Sophie's Choice of who to feed or which bill to pay.

That said, Dowlan's been hitting the job hunt pretty hard lately. He couldn't really work while Charlie only had 3 hours of school a day, but now I'm home for the summer and next year is full time school. Keep him in your prayers. Something's gotta breakthrough before we break.

Let's end on a positive note--a friend attended the recent walk for Autism Speaks and bought Charlie a fetching blue satin cape that he now wears with great dignity.

5/8/11

Mother's Day

Given that my comparisons are Concussion Mother's Day at the Hospital, the Mother's Day where My Mom's Uncle Died At The Same Time We Were At My Aunt's Funeral, & the Baby Dedication From Hell, I can only sum up Angry Hysterical Mother's Day in two words: precedented disaster. I hope yours went better.

5/5/11

Library books

I stopped checking books out from the library many years ago when I finally accepted that late fines and lost book fees exceeded the cost of the actual books.

Now, thanks to the magic of public schooling, I have small people checking out books that I may never see, yet am financially responsible for. It was bad that Dixie lost the second book she checked out last fall and didn't tell me until January. It was more frustrating that Melody lost a book that I could swear I saw recently, but can't quite place. But the icing on the cake is that Charlie gets to check out library books.

Charlie is an awesome kid with many fantastic skills, but library book responsibility is yet beyond his capabilities. What are they thinking?

I wish I could simply tell his teacher that this home contains no fewer than seven fully-stocked book cases. Two of them are in his room and contain books that are exactly the same level as the ones he brings home and loses. He reads multiple books every night. There is no shortage of books.

What there is a shortage of is the ability for Charlie to communicate what his book looks like, what it is called and where he had it last. Or that it is even missing. Or that there was a book in the first place.

This is costing me and I'm not loving it.

5/4/11

OH!

In the cast list of characters, I forgot SuperChar and Secret Agent Charles Michael. After all the heavy quizzing, you'd think I'd remember.

It seriously cracks me up that we* named this child Charlie and he goes and nicknames himself Charles.But he lets us be on his team, so we're willing to go along with it.

*By 'we' I mean 'Melody'. Melody named him Charlie. The rest of us just went along with it.

***

I cannot believe there are only 17 days of school left. I know things began in a blur with that whole eight-days-notice thing followed by the seven-weeks-of-back-and-forth while we packed and moved. The mono, flu, four rounds of strep, three sinus infections, two stomach bugs and killer increase in allergies (all mine!) definitely kept it blurry, and everything from Spring Break on just flies by.

But it's exciting to think that we've nearly completed a school year in this new home. We're quite nicely settled--the girls know all the neighbors, I've made some good friends at school, we've found a church and Charlie's thriving in his class. I keep hoping Dowlan will make some friends, but it's hard when he's home all the time and I know that will pick up once he finds a job.

Now that we're hitting summer, he has started to really look. While Charlie was in school only 3 hours a day, there weren't many things available to him. (In this smaller town, childcare options for an autistic four-year-old did not seem to exist.) I'll be home all summer and Charlie's PPCD program will be full-day next year, so we're finally to a place in life where all the kids are in school all day.

Hopefully, something will happen in the next few months. Having our other home rented out is helping to keep it all afloat, but I'm rather looking forward to another paycheck entering the house on a regular basis.

Speaking of our old house, Melody was quite worried the other day. She couldn't quite remember what parts of the old house looked like. She remembered her room and all the other rooms, but couldn't quite picture how they all fit together and how you would get from one room into another. I described it all until she connected it and she seemed quite relieved.

It's strange to think that they may grow up not remembering it. Charlie won't. I certainly don't remember my first home, although I was two when we moved away. I didn't move again until I left for college and my parents are still in the home I grew up in. This large-scale change isn't really something I know how to do.

There are things I so greatly miss (like a bathtub and a second bathroom!) but this is definitely home. Even Charlie has accepted that he can't only have Wound Wock Peopwe on his Team.

5/2/11

Big Characters

If you've been around awhile, you may remember that the way we helped pull him out of his own world enough to begin genuine communication was by pretending to be Mama Kitty and Baby Kitty. We spent much of a summer on the floor, being animals. Baby Kitty would ask for water and Mama Kitty would give it to him. Baby Kitty would ask for food and Mama Kitty would provide. After a few weeks of this, Human Charlie, nearly 3, realized that he could ask for water and ask for food and that Mama Human would provide. It was such a fantastic alternative to hysterical crying while I guessed.

From there, we progressed to the dragon stuffed animals. We have a Mama, Daddy, Baby and two Sisters. With the dragons, we could say things to Charlie that he couldn't hear us say to him. When Mama Dragon showed Baby Dragon that it was a dangerous thing to stand in the road, Human Charlie stopped running out to stand in the middle of the street and look at the shiny part where there was a penny in the asphalt, oblivious to all cars.

A year ago, when Charlie entered speech therapy, one of my goals was to be able to have a conversation with my son. His articulation was fine--you could understand nearly anything he tried to say--but the back-and-forth of conversation is something that his autistic brain doesn't find very valuable. As I've written recently, a lot of interaction with Charlie still goes back to animal role play. He doesn't connect well as a human some days.

This is where the Wii saves the day. On a Wii, you have a Mii, a character you make to look like you and then use in all your games. You pick your favorite color for it's shirt and you change it's features to resemble yours. On the Wii Fit exercise program, it automatically makes your belly and booty to match, a feature I'm not so fond of. Charlie is fond of every aspect of his Mii. To put it mildly, Charlie identifies with his character more closely than anyone I've ever met.

There are no limits, as far as I can tell, to how many Miis you can have. Melody, unwilling to choose a favorite color, has seventeen in varying hues. Dixie has a couple for her and has also created one for each pet. Charlie has quite a few Big Characters and they all have different personalities.

First is Regular Charlie. He looks like Charlie and does ordinary Charlie things. He has regular eyebrows.

Next is Sunday Charles. That is his superhero name. Sunday Charles is tall, has brown hair and green eyes and likes to play the adventure games. He has handsome eyebrows.

My favorite is Charlie Alien Bagohead. (Bagohead=Big Ol' Head). He wears a green cap and they used the features adjuster to push his eyebrows far above his head and they look like antennae. These are called Stickin' Up Eyebrows.

There are a few more who don't get as much use, but are all quite important. Now when Charlie chooses a character to be in real life, the Miis have entered his repertoire. Just as his cat is markedly different in behaviorisms than his dog, Sunday Charles and Charlie Alien Bagohead are nothing alike.

As strange as this all can be at times (he spends the car ride home from school each day quizzing me on the various attributes of each Big Character) it's exciting to me that Charlie can express himself in human form. Not quite the traditional approach, but we're unconventional people here. 

Oddly enough, when you try to call him a nickname, he gets all flustered. Last fall, my assistant principal told him 'You're a cute pie' to which he responded, "I not a Pie, Miss S. I just a Big Boy Named Charlie." Now she calls him Charlie Pie and hears, every time, "I still not a Pie. Dest a Chawlie."

(Surprisingly, Big Boy Named Charlie has not become a character. I think BBNC is who Charlie is when he's being Charlie).

He also responds this way to all the other nicknames we have for him. Yesterday, he explained it like this: I do not like nicknames. Nick is not in my name.