2/28/10

Right Now

Dowlan is submitting a job application. Say a little prayer that this one works out! It's a full time temp job that would give us enough to get by on and take some of the pressure on me. This would make it easier to work on Charlie stuff and I'd see the girls so much more than I do now. I think a job to get up and go to every morning will do wonders for Dowlan's well-being.

My turn to be a brat

Melody told me a few days ago,"I'll probably still love you when I'm a teenager. It's hard to tell."

Thanks, kid. Thanks.

However, with the way things have been around here, she might stop sooner. See, I have been Grumpy. Cranky. Snippy. Anxious. I have this weird and horrible pain in my lower left abdomen that hurts when I walk or sit or stand or lie on my stomach or breathe in. And seven hours at the ER today didn't get me any closer to learning a cause, despite the sonogram or CT scan.

I did, however, get a lovely dose of vicodin followed by an even lovelier dose of morphine. It still hurts, but it is like I'm feeling pain in someone else's body. Dowlan has the kids at a church event, for which I am rather thankful as I am not really fit for parenting right now. When we went to go get meds, the girls kept asking me questions and I had a little tantrum of whining and saying, "Stop talking to me!" I made the girls both upset and even Charlie said, "I'm sad!"

Charming, eh?

I'm supposed to go back on Tuesday for a follow-up. Hopefully they can figure it out.

2/25/10

Melody has acquired a wide range of accents, from auctioneer to boisterous italian to french chef. Right now, she is in the kitchen, play fishing with Charlie and speaking in a slow Texas drawl.

I started to say that I have no idea where she got it but *blush* I do. I know exactly where I got it. And it is so funny to hear all my goofiness come right back at me.

So if you add this little toolbar

to the top of your browser and use it for your searches, you gather points that you can get stuff for. The most useful of which is amazon.com gift cards. My friends that do this average $5-10 in amazon cards a month for little additional effort.


Use THIS link to sign up for swagbucks if you want to try it out.

2/24/10

More Baby Steps

Today I had coffee with other moms who have autistic children. Got good information, some suggestions and some new energy for all this.

Then I bought teff. I'm betting 95% of you have no idea what that is. Hint: it was at the hippie grocery store.

Then I came home and had my first attempt at making spring rolls. Pretty good. I'm going to try sushi tonight.

While chopping up tiny bits of things, I called and hired an advocate to help us deal with the school district. We have a full evaluation next Friday and I want someone there on our side. I am so tired of being brushed aside and written off and when they start to question me and throw babble at me, I can't think. I need someone there to help me think.

March 5th is the school district evaluation. I had to call up the food chain to get them to do this and I'm realizing it should have happened months ago. Time is going by too quickly for Charlie. 3-5 is a very key developmental age for the skills we're hoping he can learn in preschool and odds are he'll be 4 before we can get him started somewhere, even with a lot of pushing on our parts. I'm not happy about that.

I also had a friend call with a possible job. It's nice to know that there are actual jobs in the world. I find myself driving by these mammoth office buildings thinking 'Surely one of them has an extra cubicle and paycheck lying around for Dowlan.'

Speaking of driving by office buildings, I have now driven by the Echelon building three times. Twice with the girls in the car. The first time, you could still smell the fire. You can't see any of the plane but it is amazing to see a building with a giant hole in it still standing.

However, they're not sure how much longer it will be standing and anticipate spontaneous collapse within the next few weeks. Until then, traffic will continue to be cut off for one section of the road in front of it.

It seemed odd that life has moved on so quickly after this. The first time I saw it was three days after the crash and there didn't even seem to be a pause in the activity of the offices and shops nearby.

Ah, back to that time thing. I wish I could slow it down, just a bit . . .

2/23/10

I've missed this

The school may have not declared it a snow day, but I did. For the first time in my tenure as a mama, I got to tell bleary-eyed children that they got to stay home from school and laze the day away.

The sleet had begun in the middle of the night and everything was soaked and pelted as we awoke. The temperatures were going to dance on both sides of the 32 mark all day and I just didn't want to deal with having it all ice over before it was time to get them to school. Well, that's the official version, anyways. Rumor was that it was going to start snowing before the morning was up and I hated the thought of my poor little Texans being stuck in a classroom the only time it ever snowed real snow in their yard.

I can't exactly say we had a picturesque blanketing softening the landscape, but we did have enough to cover up the cars, porch and dirt. The girls were in and out all day, bringing friends with them to warm up just enough to go outside again. Charlie, still sick, made it out two or three times to experience the crunchy feeling of walking on snow. The girls, feeling pity for their baby brother, brought in bowls of snow for him to eat.

We spent some time at the kitchen table, practicing writing numbers and counting money. They read me a book or two each. I sent them to play and got out the griddle to cook breakfast-for-lunch and must say that there's something remarkable about the idea of a single surface that can make your bacon, eggs, pancakes AND toast just right.

After getting the call that work was closed for the afternoon, I spent most of the afternoon cleaning out the pantry, the cabinets and the top of the fridge. Got all my cake decorating stuff finally located in one drawer and got rid of the random bits of stuff that had fallen into the back of the up-high cabinets, unseen for the last year. I know it's a bit cheesy, but I got my kitchen back the way I like it to be, saved from the entropy that had encroached upon it.

Even though I was ready to sell all of them to the Gypsies around 4 p.m. when they were whining and arguing while I was trying to get things wrapped up, a warm snack improved their moods and the girls took turns playing with Charlie and tolerating him during his repetitive and anxious play that drives us all crazy. Melody said, "I wish I had autism, so I would want to play like Charlie does and could know how he feels." Sweet, precious kid.

After dinner, we snuggled up to watch UP and they're falling asleep one by one. Dixie's on Daddy under a warm blanket on one couch, Melody and Charlie's head on the same pillow on another. I don't get days very often where I just get to be mom anymore. All these jobs, all this paperwork, all this stuff that takes over my time . . . doesn't leave me a whole lot of time to just be mom.

2/22/10

he had a Big Idea

Charlie has barking cough and spent the entire weekend asleep. A couple times he would wake up just long enough to be medicated and then knock right back out. He drank enough to stay okay, but ate almost nothing.

I took him to the pedi first thing this morning. Along the way, I discovered that Medicaid has reassigned primary care providers to my kids that are (once again) over a hundred miles away. At least they're all the same PCP, unlike the time they were 100+ miles away in three completely opposite directions. The doctor's office said 'just bring him in, we'll figure it out later.'

After learning that his lungs are clear but his ears are not, we went to fill prescriptions and get more OTC meds before heading home, as I had online shopping to do.

See, this morning he woke up talking about wanting a little LarryMobile. For those not hip to the vegetation vernacular, this is a LarryMobile. We have three of them, as the need to produce one on demand is strong. We also have a spare one at my parents' house.

But he somehow awoke this morning with the notion that he needed a Widdew MoBEEL and I started trying to figure out how to mold a plastic vehicle that he would not instantly destroy. Yes, I held out the hope that he would forget, but the subject of the Tiny 'Bile is all that could be discussed this morning. He wanted to go to the 'Bile Store. He wanted to see the Doctow wit da 'Biles. I've been Charlie's mom long enough to know that a fixation doesn't just disappear.

So I get home and do a google search for LarryMobile, figuring it would be futile. The original 'Bile of his dreams is no longer made, hence our stockpiling of them. But the first thing I pull up is this beauty: a four-inch model of a LarryMobile.

You know those pesky ads on my blog? I had some money sitting in PayPal from the last month's ad revenue and bigidea.com accepts PayPal. So we now have four Tiny 'Biles headed our way.

Charlie was so excited to see the pictures thaa he woke up for the first time in days and was in overdrive all the rest of the morning. As soon as the 'Biles were ordered, I was summoned to the rug to play Hot Wheels the rest of the morning.

And, after all that time spent making the green car do the same few things again and again and again, I must say that I am also eagerly awaiting the coming of the 'Biles.

2/20/10

She's one to talk

Melody, watching the olympic figure skater from China:

Mommy, is that all of her? She's really tiny. Is that really her body? I think it's a trick. I mean, how do they get an entire person to fit in there?

2/19/10

The Afterbath

Mommy: Charlie, come get some clothes on!
Charlie: No.
M: You've run around naked long enough. It's time to get dressed so we can go pick up your sister.
C: I am dressed.
M: No, you need to GET dressed.
C: I am not naked. I am dressed.
(He looks down and gestures to his body.)
C: See my body? I am dressed. I am dressed
(Eyes dart about as he scrambles for a finish to that sentence.)
C: I am dressed like a naked boy. See my head? It is dressed like a boy head. And my body is dressed like a naked boy body.

2/18/10

Crash

For those who don't follow the news, a disgruntled man left his home in flames while he flew his single-engine plane into a building that, among other things, housed local IRS offices.

All day, I watched, read, refreshed and tried to absorb what had happened to this building only 8 or so miles from my home. A building I have seen countless times, but never really looked at before.

At about 1:30 I began to realize that I had to get dressed, step away, go get the girls from school. I had to figure out how to explain this to them, as it will surely filter into their world from somewhere. If nothing else, we will drive by someday a building with a hole in it and they will ask why.

It's crazy. Simply crazy. I cannot myself understand this act; how can I explain it to sweet children?

The stories have been trickling in all day. A dad of Melody's classmate was in the building, the uncle of a friend. A guy I used to go to church with driving past it right after it hit, a student's dad in the building next door, a friend's friend here and someone's friend not there.

I just cant process this. This happened where I live. I see this building, I drive down that road, I have looked at moving into that neighborhood where his house burned as he flew into an office where people in my life have walked. I am stunned. I think that, if I only read it enough, hear it enough, see it enough, it will make sense.

This must be how New Yorkers felt. The enormity isn't the same, but when you consider the scale of new york:austin, it hits as hard.
To our big-little laid-back town of hippies, techies and college-kids like me who came and never moved away, it seems so out of character to be attacked by such anger.

Dear Husband,

While I appreciate that you made melody a doctor's appt, honey, it would help if it was with her doctor. Or if you knew the doctor you made it with. Or their location. Or phone number. Other than that, great job, Dad!

I'm on day two of lolling about in misery, so I'm lacking my usual flair here. But when I did track down the right place to cancel the appointment, he receptionist at least got a kick out of it.


2/17/10

I'm sick in bed today, sitting up under the covers with the lap top in front of me. Once the girls went to school it got quiet enough for me to hear this rattling sound every time I breathed in. I couldn't feel it, though, so I wondered if it was perhaps my empty tummy rumbling?

After pausing to listen to it for a moment and holding my breath to see if it would keep happening, I realized it is the gentle rhythmic snoring of Simon the Cat, who is curled up snugly behind me

2/15/10

Bits

Today we went to get blood drawn. Charlie's last draw didn't have enough to complete the lead test, so they needed more. They also needed samples from Dowlan and me to send to Baylor's genetics lab to run a chromosomal microarray test on. Apparently, when they did this test on Charlie, there was a deletion on his second chromosome. I'm assuming we'll meet with the neurologist when it all comes back.

***

To answer Cindy's question, I think two. I've been blogging for 2.5 years and you were one of my first steady commenters. I think you stood out because you were one of the first I didn't know to read and that amazed me. I'm still amazed by all this blogging thing, really.

***

Melody just told me, in a cheery sing-song voice, "You know, if you just had me it would be a lot less expensive."

2/13/10

Ten Years

Ten years ago this evening, at about this time, we were leaving a Bible Study at Nathan Huey's apartment. A certain young man was giving me a ride home and stammered out that he thought that there was a new movie out that he thought someone might like to see and I grinned back that I thought that would be fun.

We headed to the wrong movie theater in south Austin, then made it to the right one a little late, but hoping to squeeze in. This didn't happen, though, because his bank card was denied and they mentioned that it hadn't really been working all night.

We headed off to find a bank, but we missed the entrance and parked in the next driveway. After climbing a hill in the dark, we found the ATM and the angry man standing before it with a receipt in hand stating he'd withdrawn $400 but no money in that hand. Deciding that was not the ATM for us, we slipped and skidded back down the hill in the moonlight and headed off.

Realizing we were low on gas, Dowlan stopped in at a gas station, only to find out that their pay-at-pump was working no better than their down ATM. At the next gas station, the attendant said that the recent flooding in Houston seemed to have downed the electronic banking networks in the area and so we dug out four dollars and got at least enough gas to end up not stranded.

A quick stop at HEB showed their debit/ATMs were faring no better, so we decided to give up and go get a drink at Jack-In-The-Box and try again another night. We passed another theater on the way, though, and thought we'd try one more time. Their ATM went through and we had about 20 minutes before the next showing of The Tigger Movie started, so we stood in line for popcorn

Behind us was a four-year-old boy who was Very Excited as this was his first time to go to The Big Movies. Dowlan was crouched down talking to him, matching his excitement and wide eyes.

During the movie, there's this part where Tigger is momentarily unbounced and free-falling into an icy ravine. I remember feeling the arm around my neck relax when he was spared from death at the last moment. That's right--Dowlan was scared for Tigger.

Tonight we got out for a nice dinner of Meat, Shiner and More Meat at the Saltgrass and now we sit, all five of us on the same couch, snuggled up and watching The Tigger Movie. What a crazy ten years it's been!

2/12/10

Neurologist Called

Apparently, there were some irregularities in Charlie's chromosomes. Dowlan and I will go get tested next week to see if the same irregularities are present in either of ours.

We won't know the implications of it all for awhile, but for now it gives us a cause and reason for him being how he is. In the long run, it will likely have some impact on the treatments and therapies we choose for him.

It also gives the people who research this stuff more data to work with.

2/11/10

Happy Valentine's!

valentine's

Well, they're the happiest Valentine's I've ever seen. We started last Saturday with my Cricut machine, a few stamps and some bright, fun paper.

valentine's

I made a point to only make a few a day, as they tend to get frustrated when asked to write their names fifteen times and I wanted them to do their best for their friends.

Melody focused on getting each child their favorite color and something they like on their card. These are the ones for her class:

valentine's

Dixie wanted mainly to make sure that no boy got girl colors. Here are the ones for her class, finished up tonight.



valentine's

Barring any fantastic ice storms in the night, we are looking forward to giving them to our friends tomorrow in our class parties.

I've been extra busy putting fruit on sticks this week, so it's a bit of a miracle that anything got made, especially things that were cute and fancy

2/9/10

Random Bits

When I use my hand to cover Charlie's mouth while he coughs, he coughs into it then, once done coughing, licks it.

Dixie is a super thing-finder, but only when it's not her things.

Melody makes a great paralytic to be healed by Jesus in ad hoc church plays. When she 'got healed' Sunday, she sprung to her feet, raised her arms in a V and hopped in circles cheering. I imagine that, if I were ever healed by Jesus, that's exactly how I'd feel.

2/8/10

PSA

When watching kids jump in a bounce house, don't lean into the netting to smile at your granddaughter or Charlie will launch into your face head-first and re-break your nose.

Guess how we learned this gem?

2/6/10

The Craziness is beginning again

Last night the girls and I started making Valentine's for their classes and this morning I started training back at Edible Arrangements before going to Sylvan for five hours. Tomorrow I am in a play at church and there's some kind of thing going on that night that seems to be important to people . . . maybe a soccer game called the World Series where they play for the Stanley Cup?

So I'm back to two jobs next week. Dowlan is doing some temp work as well, so we'll be passing of the children like a baton in a relay race. It will be good practice for when my test scoring job starts again next month.

Dowlan's unemployment compensation ended a few weeks ago, and it will be interesting to see what the next few months bring. I think I am prepared for this, but still on edge.

The school psychologist visit did not go well. I really don't want to get into it because I haven't mentally processed it all yet, but the gist of her determinations was: autism isn't necessarily a disability, we won't know if he needs in a developmental preschool until he has failed in other environments with modifications, I should expect his Sunday school and gymnastics teachers to make appropriate modifications for a special needs child despite their lack of training or responsibility to do so and that I need to enroll him in a mainstream preschool and see how it goes. She suggested I simply don't tell them he has autism and see how he does.

Infuriated yet?

I know he is on the mild and high functioning end of the spectrum, but that does not disqualify him from receiving support at this juncture according to the federal government. What it should mean is that he gets the help he needs now to meet the potential he has, as 3-5 is a key window for gaining social and verbal skills in children on the autism spectrum.

I've been given some names to contact and ideas, but I'm open to others.

2/4/10

Speech eval

His speech evaluation was yesterday. She got a really good view of Charlie at his best and not-best in the 80 minutes we were there.

Things started off well. He sat, he answered questions. Every now and then he'd get up and try to find something more interesting to do in the room, but was pretty re-direct-able. (How do you like that word??)

He seemed on edge after awhile, so she took him into the therapy gym to play a bit. It was getting hard to sitting in a place he's used to playing, as he goes there for his occupational therapy. And he saw his OT working with another kid, which seemed to confuse him a bit--her job is to play with Charlie, right??

The test is kind of interesting. There are things he answered that surprised me as well as things that I knew he could do that he just didn't that day. I'm assuming that's normal for the process, though.

One of the last parts of the test was a series of analogies and his responses cracked us up.

Speech Therapist: We sit on a chair, but we sleep on a
Charlie: Dog.
ST (looking at me): Does he sleep with the family dog?
Me: (shrug) We don't have a dog.

A few more questions go by, and then this:

ST: An apple is red, but a banana is
C: Black.
Me: But they're yellow when I buy them!

All in all it went well. She said he has no trouble with his words as much as his communication and that is something they can certainly work on. Unfortunately, the test doesn't capture that area quite as well, so his score will be higher than reflects his ability and Medicaid may reject coverage on the basis of those scores.

I think the most interesting part was that he didn't seem to hear the words 'not' or 'no' when in a question. She'd ask, "Which shape is not a star?" and he'd point to every star. "Which basket has no eggs?" and he would point to the eggs. "Which tree doesn't have any apples on it?" and he would point out the apples.

I have to think about that to figure out what it means, know what I mean?

***

Edited to add:
I realized after posting this that I left out the three times during the testing that he got upset and I had to hold him for a bit. Each time, he took off my glasses and either folded them up and squeezed really hard or threw them to the ground.

At the end, he did not want to leave. He wanted to have his time to play in the gym with his OT and was really confused as to why. I hung out in the waiting room for a good while as he touched the doorjamb, looked out the window and touched all the buttons on the vending machine. I thought he was finally ready to go, so I picked him up to carry him to the van (it was nasty cold and raining, so I was trying to move quickly) and he flipped out. Tore out a chunk of my hair, arched back, threw my glasses to the floor and began to kick.

I carried him out as he tantrumed and strapped him into his carseat. He screamed the whole way home. Once home, he ran over to a cabinet in the living room and threw everything on it two the ground, then climbed atop it and stayed for the next hour, growling if I so much as looked at him.

It was not one of our better days. There have been more and more of these lately, and he is getting stronger than I can handle. I know there has been a lot of upheaval in our lives and that it is not helping.

Tomorrow the school district psychologist comes out to observe Charlie in playgroup. I hope, pray, wish that he gets into the developmental preschool because Charlie needs things beyond my abilities some times these days.

2/2/10

The Difference

I was trying to figure out how to put in words the difference between Charlie and a typically developing child his age. There were so many cues along the way, so many little things that stood out to me that other people didn't see. I try to explain that he was slow meeting every milestone and get, "Well, each child develops at their own rate!" in a cheerful voice. I'd explain that he spoke late and didn't try to use words to communicate his needs until he was three and get some story about some kid in the family who talked late and is 'just fine now.'

I know people want to calm your fears and reassure you, but that doesn't help when you know something is wrong with your child.

Charlie talks now, but he doesn't converse. Yes, you can talk and forth about LarryBoy or getting dressed or how many marshmallows need to be in his hot chocolate (aka lukewarm chocolate soy milk). You can ask a question and get an answer, then ask another one, but you can't really talk to toCharlie.

I realized today how to explain the difference between Charlie and everyotherkid. Charlie doesn't ask why. He doesn't ask how. He doesn't ask 'what happens if' or wonder what makes this or that work.

He's three-and-a-half. Every other two or three year old I've ever known has asked 'But, why?' all day long and wanted to understand the world they live in. Charlie does not. He wants to know where he's going and where his stuff is, but isn't aware enough of the world around him to ask why.

Yes, it really was too much to ask

After three weeks of running solid here and there, we decided that Sunday morning we were going to be church skipping-heathens after it was clear that any efforts to get 5 of us out the door were clearly going to fail. Getting out the door in the mornings is the worst part of each day and we'd had no downtime in weeks.

After an hour or so of hanging out, snuggling, watching some cartoons, enjoying breakfast, etc, I snuck off into the bathtub to read a book written by a mother of an autistic boy.

I'd been settled in my warm, bubbly paradise for all of ten minutes when Melody arrives, wearing only socks. The socks do not stay on long and I soon have company in my tub.

Not a huge problem, as Melody isn't much of a splasher and seemed to just be seeking some warmth and companionship on a chilly January morning. I continue to read while she amuses herself somehow and we pass a few shared minutes in genial silence until Charlie arrives and begans tugging off his clothes.

So much for that book.

I barely have time to move it to a safe location when Dixie decides we need to make room for her. It's a good thing our tub has room for four.

I wash their hair, I play silly games with them. All is well until it is time to get them out. Daddy comes in and holds out a towel, but no one wants to be first out. We command Dixie out then drag Charlie out. Melody, always one to [s]cling to her guns and religion[/s]remain attached to my body at any opportunity, simply will not get out of the tub.

I pull out the plug and wait until the water is all gone. She is still content to be naked there, even as the cold creeps in. Tired of waiting for her to vacate, Dixie starts to potty, only her poop seems about as cooperative as Melody at this point. She starts howling, "My poop hurts! It's so hard! It won't come out of my body!" and demands a 'giant raisin' (aka prune).

I use this as my excuse to peel Melody off my body and leave her in the tub and return with the requested prune. I try to explain that it will take awhile to kick in, but she won't listen and pops it in her mouth. She waggles her jaw up and down about three times before dramatically declaring that it is too sticky and will pull out her fillings if she eats it. I suggest chewing with her front teeth, but that is far too logical and impossible an approach.

I suggest finishing up and then drinking a glass of water, as she may be dehydrated. She starts begging for water in between descriptive outcries bemoaning the state of her poop. I tell her that this is a bathroom, not a place to drink and dine and that she may have water when she is done.

At this point, I realize that Melody is still naked, still in the tub, but is now dancing naked. See, our tub is in the corner, with mirrors on the wall above it and this grape arbor thingy (complete with chandelier) that I built a few years ago.

This description is really bad and I'm sure anyone who hasn't been to my house has no idea what I'm talking about. To stop my ramblings, here is a photo:

Photobucket

I look behind me and find that Melody is standing on the edge of the tub, holding on to the wooden supports and dancing naked in front of a mirror. That's right, she's pole dancing. I suggest she stop doing that, as it sets a bad precedent. "Why is it bad for presidents to dance naked?" she asks, and I told her to take that one up with Bill Clinton.

Annoyed by my distraction from the issue at hand, Dixie begins wailing, 'But it's so hard! It's like, it's like a bone! Oh no, Mommy! My bones! I'm pooping out my bones!"

Remember how this was supposed to be me, reading a book in a quiet room, alone?

She finishes her business, finally. As I am dressing the Melody child, I look over and realize that Dixie is frantically patting down her arms and legs with her hands. "What in the world are you doing?" I ask.

Her reply? "I'm just making sure that I have all my bones still and that I didn't poop one out."

2/1/10

We're having one of those days.

I want to remind you of this post from about a year ago. I wish tantrums were still only that mild.

I have a hysterical series events from yesterday morning to recount to you, only I can't seem to get ten minutes free in which to tell that story. It involves bones, poop and presidential naked dancing. You'll love it.