Thursday, July 31, 2008

success . . . maybe

I found a doctor! This was much more difficult than expected. No one is taking new patients. If they met me they'd make an exception. =)

I finished folding and putting away the laundry. You know, the laundry I blogged about on Monday. Today is Thursday. I considered leaving it in the basket and just using it until the basket was empty, thus signaling the beginning of the cycle.

And the dishes are clean.

Okay the dishes are still dirty.

Free online Scrabble is a death sentence for productivity. I'd show you a chart, but us fraggles aren't good with lines and numbers. I'll let the dishes and now wrinkled (though hanging and folded) laundry speak for themselves.

I had one of those classic moments at the grocery store today. I went to buy muffin mix for something this weekend and to pick up four more things for our household. Well, I of course ended up with many more things in my cart, including my WIC items. When the cashier asks for my WIC voucher, though, I realize I've left it at home. I go ahead and buy the stuff because I need milk and eggs and don't want to have to return to the grocery store for at least another week. As we're walking out to the car I think about how I should have just bought the milk and eggs and waited on the other items in order to save some money. At least she gave me a coupon for the eggs. Thinking about coupons immediately makes me realize I didn't give her the $2 coupon for the Pull-Ups or the $0.50 coupon for the wipes. I can probably go back in and show them my receipt and get the money, but it's hot and Punkin is tired. As I'm putting my items in the trunk, I see a bag on the ground. A bag with my eggs. Thankfully only one appears to be broken. After unloading everything at home I go to start washing dishes so that I can bake the muffins. Thinking of dishes makes me wonder if I even own a muffin pan. I check. No muffin pan. I go play Scrabble instead.

Tuesday, July 29, 2008

status report

apartment: still messy

muddah and punkin: still tired

punkin's ewwy diapers and red bottom: are likely a result of being unable to properly digest a certain food, probably of an acidic nature. which certain food, you ask? that is a fabulous question that i will attempt to answer within the next few weeks in order to avoid having to collect and bring in a stool sample for testing.

toenails: are painted red, per request of four year old boy in my classroom

scrabble: four games won (by a landslide). 56 points for one word that made three words. huh?
i hate it when: i cook dinner and punkin doesn't eat. what a waste of time and clean dishes.

i am in desperate need of: a pedicure, a haircut, and an eyebrow wax. and maybe a drink.

Monday, July 28, 2008





This photo is horribly unflattering to me. Of course Kristie looks hot. Jerk. It was taken at the banquet on Saturday night. Dinner, dancing, auctioning for the Fragile X Foundation. Very fun. And Oma even took Punkin up to the room after dinner so I could have fun. =) I know, Oma rocks.
The next day was quite brief. There were two panels of experts set up for people to ask specific questions of about medication and intervention. When it comes time for Punkin to start any kind of medication besides melatonin and Prevacid, we will hopefully be able to visit one of those experts who works at a Fragile X Clinic in Chicago. Of course, by then the Fragile X Clinic in Iowa may be up and running! We stayed for the first panel and then took off for home.
I had grand plans to write all about the final few days of the conference -- about how our fraggles are not sequential learners like the rest of the world but rather need to see the entire process at once -- but I am exhausted. I do not recommend attending a five day special needs conference with your special needs child, driving home, and waking up early the next day to go work with special needs kids. I really need one day to just reorganize my apartment, which seems to have vomited luggage, toys, and laundry.
And this afternoon was nothing but errands, which aggravated both of us because we it made us sweaty and because it required climbing in and out of the car nearly a dozen times. It was one of those days when I had to retrace my steps a lot; I had to complete tasks or grab things from the other side of town, and that's remarkably annoying to me. But we completed our assigned tasks, including picking up a few groceries and getting quarters, picking up some items from home, four loads of laundry, picking up Ducky #2 from Oma's because Ducky #1 was accidentally left at school, feeding the cats (he remembered where we were as soon as I parked the car -- and he is still petrified), and mailing a package that should have been mailed a week ago (sorry!). We survived!
But it's better than tomorrow when we get to go to WIC!
Oh, but back to the conference -- I need to mention meeting this lovely blogger. What a wonderful little family! LOVE her. In a bloggy way. =)
Did I mention Punkin is using a phrase now instead of flipping out? I mean, not always (ha!), but a lot of the time. "No want it!" Too bad it's not a choice sometimes! Tuesday afternoon through Wednesday at about noon, he was dry. He was a pottying fool. But as soon as that babysitting started, the pottying stopped. Now it's, "No wan it!" Grrr. Can I say that at WIC? "No wan it!" I would if milk didn't cost $12 a gallon (or $4, whatever).

Friday, July 25, 2008

days three, four, maybe twelve....

On day three I finally got him to EAT something! We found a place with BURDERS! I swear I feel like I've been at this conference for a month! It is overwhelming.
I don't normally post diaper pictures, but the kid is so darn cute. He's also very dissapointed that the pool is closed. We got all dressed, went down there, and had to go back to the room.
Woody has been accompanying us everywhere. He's Punkin's BFF at the childcare place, which is not at all what I thought it would be. He's in a room all day with a whole bunch of other kids and seemingly no structure or particular person assigned to his care. Not so much impressed with this company. Anyway, in this photo Woody is enjoying a bite of Punkin's bacon. "Nummy!"
For some reason it cracks me up that he's doing this -- like Ronald's going for a ride or something. I love it.

My head is swimming from all the information. This has been so energizing for me. Makes me want to stand on the street corners and hand out pamphlets. Or just go home and attempt to implement 15 new goals. Which, I know, is a bad idea. Gotta start with one goal, conquer it, and move on to the next.

I've known about hyperarousal and sensory diets for a while now, but after hearing some amazing OTs and other professionals talk about how it is the single most important thing I can do to help manage Punkin's behavior and anxiety, the urgency of setting a "diet" in place has taken me by storm. A sensory diet has nothing to do with eating. It is basically a series of activities throughout the day which are sensory related and meant to either introduce needed sensory input or take away bothersome input in order to keep the child in a more balanced state of arousal. Each child's diet is unique as well as the timing of the acitivities. The most severely affected child might need intervention every one to two minutes and some may need it two or three times a day. I'm thinking Punkin falls somewhere in the middle -- probably every hour and half, maybe two. And a lot of the suggested activities are being done already, they just need to be formalized into a plan and executed every single day. Jumping on a trampoline, swinging, climbing, heavy physical work, wearing headphones, time in a cozy corner, and chewing or biting objects are all examples. Right now he goes and gets the breakfast cart from the basement and helps push it down the hallway. He also enjoys having the therapy ball rolled over his back or being wrapped up in a bean bag. And his teacher turns at least half if not all of the lights off during part of their work time each day. They're all fairly easy and quick; the issue is committment and consistency. I really also liked the idea of giving him a choice of what he wants to do.
So that's that. Tomorrow is another big day. There's a banquet with dinner, dancing, and an auction. Punkin has so far been an angel. Special needs or not, the kid rocks the house. He is doing GREAT. We'll see if he can handle one more night of insanity and disruption. Hopefully we can get him to take a nap from 5-7 and then go to the party. Wish us luck!
I have to stop this now, even though I haven't mentioned meeting another FX blogger because I randomly looked at her nametag and meeting another FX mommy from hundreds of miles away who reads this blog and others linked here. AND being able to talk to a majorly amazing neurologist who said my muscle pain is likely a result of too much norepinephrine from my SNRI (Serotonine and Norepinephrine Reuptake Inhibitor) and I should switch to an SSRI (Selective Serotonin Reuptake Inhibitor). She also confirmed Oma's suspicion that the antibiotics make it worse; apparently they metabolize the drug differently which leads to an even greater level of norepinephrine. Holy cow. OH, and there's Oma feeding me beer because my own arms are full of Punkin. AND learning, or rather confirming with two established studies, that I am not crazy nor am I the cause of my son's inability to fall and stay asleep. Turns out FXers have a raised level of melatonin, but it's raised all the time rather than increasing towards nightime. And we get much less REM (or restorative sleep) than everyone else. So melatonin (over the counter) or another clonodine (available with a prescription) are fantastic options (once you've talked to your doctor, because I am NOT one) if behavior intervention hasn't worked. Makes me wanna copy the powerpoint and tape it to a certain sleep clinic doctor's door. So I guess I didn't stop. Longest post EVER. =) Night.
p.s. I found free online scrabble!

Wednesday, July 23, 2008

days one and two

Everyone started out so cheery.
We set off Tuesday afternoon to stay with friends near St. Louis
before the conference began Wednesday.
Oma's gonna kill me when she sees this! (heeheehehee)
Yes, I intended both to look like that and to share it with you.
Ratatouille.
Woody watching ... Woody!
Oops. That's 25 minutes back to the rest stop to retrieve my glasses.
It's not funny, Muddah. I told you and Oma you missed the exit! Jeez!
He protected me at our friends' house Tuesday night.
Wednesday morning -- we're here!
TAR! TAR!

So far we've explored Union Station, attended a few sectionals, and met up with Kristie. I've never met up with an online friend before. It's crazy, I feel just like we see each other every day, but I also realize it's so exciting to meet her and her husband. We also met a few others and spotted some very adorable Fraggies. Hope to post more tomorrow! Punkin is being an angel, although right now he is lying upside down on my lap trying to fall asleep after a busy, napless day.

Monday, July 21, 2008

Tomorrow's the big day! We're traveling to St. Louis for the National Fragile X Foundation Conference. I am a meticulous about packing. I started three days ago. I think it eases my anxiety about leaving my safe, happy, cave home for an extended period of time.

In other news, I'd like to introduce you to my new boyfriend. I LOVE this show.

Sunday, July 20, 2008

cause if you can't talk about poop on your blog, where can you talk about poop?

i decided that if i had to live through this experience, then the rest of the world must at the very least hear the story.

ahem. punkin has had, well, messy diapers. he's not sick. but it might make me (and his teachers) sick.

do you ever think, I should go check on my kid, but you're in the middle of changing your clothes or -- excuse me ........

.....back. i had to go talk to creepy man. (hate that guy)

anyway, i thought i should check on punkin, but i needed a minute to get dressed. when i'm done, i go check on him. he's in the bathroom, shaking his extremely messy pull-up over the toilet and saying something about poop. i start the clean-up process, which is extensive. it's on the door. it's on the floor. it's in between his toes and on his knees. and, of course, it is all over the potty. i start walking him to the living room only to discover a trail of runny mess all the way to the big brown chair next to the television. oh, wait, there are two more piles on the carpet. as i am no csi detective, i cannot tell where the mess began. all i know is where to find the resolve pet stain and odor carpet cleaner.

the good side to all of this? punkin's ridiculous bms of late have forced me to be a very proactive potty-trainer. i caught him two and a half times (once was in the middle of going) before he exPLOded and got him to sit on the potty.

Wednesday, July 16, 2008

wanted: bouncer

since i moved in to this apartment, there has been a guy wandering the complex and the busy street it is on. after a few months he started talking to me. it seemed every time i was doing my laundry, he was there. he commented on my bears t-shirt. then one evening he shows up at my door with said shirt after i apparently dropped it in the laundromat. now he shows up at the door two to three times a week, just to chat. tell me there's a tornado warning. tell me there's an ambulance at the next building over. cause i didn't see the flashing lights or hear the sirens. tell me he went to see a movie. tell me he's going on vacation to colorado. and now telling me he's moving to colorado (hooray!) in a year (wha???).

"why don't you just ignore him when he knocks?" you ask

because he knocked REALLY loudly four different times. loud like a police officer ready to serve a search warrant. loud with a tappity tap tap pattern like we're friends or something. AGH.

i love my little cave. LEAVE me ALONE.

i need a bouncer.

in other, completely unrelated news, punkin did a great job at school with his "tar." however, one of the children in the class i work in spotted the "tar" and proceeded to have a meltdown WHILE i was changing his VERY messy diaper. (rolls eyes and shivers) seriously.

Tuesday, July 15, 2008

magic wand

because i, too, am not above bribery.
granted, it may lose it's charm relatively soon, but seeing as how it got him to sit on the potty three times and actually go potty one time all within two hours, it is five magical wand dollars well spent.
this was the conversation:
muddah: do you want to sit on the potty?
punkin: NO. NO. NO.
muddah: you get the star.
punkin: NO.
muddah: do you want the star?
punkin: YES.
muddah: you have to sit on the potty.
punkin: NO.
muddah: if you sit on the potty, you get the star.
punkin: tar?
muddah: you have to sit on the potty.
punkin: no.
muddah: let's go potty. you get the star.
punkin: tar? tar? tar?
so i basically led him -- enticing him with the "tar" -- to the bathroom, where we played the "ya name?" game in between attempts to sing the ABCs. and i had to tell him he was all done. we had to say "bye bye" to the "tar" about fifteen times while he put it away. and later he looked at me and started to tug on his pull-up, so we ran to the potty (with the promise of the star) and he went for the first time in a long time. woo-hoo!

Monday, July 14, 2008

silly punkin!

it's a big girl bed!


two exciting things: 1) project runway season 5 starts wednesday and 2) the fragile x conference is next week. ahh!

pretty soon we will start some official potty training around this place and at school. the biggest obstacle seems to be getting him to sit on the toilet and then stay there long enough to do some business. it's been suggested by a number of places to get a super special toy that he can only use when he's on the potty. his teacher and i agree that a light-up star wand will probably do the trick. =) and since the one i bought him a month or so ago was demolished, i'm thinking this is a good time to reintroduce fairy wands on a limited basis. so on my list tomorrow: two light-up wands.

now, i'd be willing to give him candy for actually going, but that won't fly at school. so i'm thinking stickers -- preferably nemo or mermaid -- and lots of verbal praise. now, i don't want anyone to think i expect this to work anytime soon. cause i don't. i'll be thrilled if it's accomplished within the next year. baby steps. but i do think he's ready -- he's telling me he's wet and/or dirty, he can take his pants off and put them on, and he wants to be like his pottying friends. as they say in ratatouille, "Let's DO this thing!"

oh, and i totally got spoiled tonight after last night. he fell asleep aroun 6pm. granted, it was after about 45 minutes of extreme clinging and nonsensical whining, but it works for me.

Sunday, July 13, 2008

guess whose bratty kid is still awake?

right. that'd be mine.

note to self: never ever ever ever skip melatonin two nights in a row and then let punkin take a three hour nap the following day.

note to punkin: clothes are not optional in today's society. also, diapers or pull-ups are required at all times until you decide you want to wear super cute little boy undies with spiderman and mickey mouse on the front, at which time said undies will replace diapers as a necessary clothing item. i know i let you swim in oma and opa's pool in the buff today, but it was a one-time deal -- no matter how many times you practically jump out of the car, strip naked, and dive in.

a certain boy and his teacher are going to have a very long day tomorrow.

Thursday, July 10, 2008

have you ever tried to hug a fish?

Cause that's what holding Punkin is like most days. A slippery, flopping fish. And containing him in a booster seat with a shoulder belt is much like trying to seat belt said fish. I click it, he squirms out, catching his shoe on the belt, which ultimately traps him. I wrangle him back in and click the belt. I scold him, he laughs at me. He removes his shoes and socks. We drive five feet. Free of the cumbersome sneakers, he McGuivers out. Lather, rinse, repeat. Show up late to work. Lose two more years off life.


Try to get out of this, fart-face, I mean sweet, sweet child of mine. =) After a FIFTY minute drive home from work on Monday, I decided enough was enough and dropped $150 (after a $20 off coupon) on big mama. It is so heavy. Finding a carseat that will support a child who is 40 inches tall with a five-point harness is quite the undertaking. Oma and I found two. One was $280. So, that plus the cupholder made this one the clear winner. Here's my new dress. I went from being super totally major excited to happy to mostly happy to very unsure. It's for a wedding on Saturday AND it was 50% off. Now I need to figure out what shoes to wear....

Monday, July 7, 2008

the fourth, again

reading my post about the fourth of july, it occurs to me that in my current mood the fireworks display could be described in a much different light. for example, i seem to have left out the fact that my parents' neighbors must have spent a grand -- easy -- on ca-ra-zay fireworks that rained white and black schmutz into our eyes, drinks, and hairdos. so much raining down, in fact, that one member of our party, who shall remain nameless (ahem, lola), wore a plastic face mask that my dad uses in the shop. not goggles, a full-on flips up at the top mask. and instead of laughing, i was actually a smidge jealous. even if i had decided to wear my sunglasses, they would certainly have not been adequate protection for my mouth and nose. blech.

ooooooooooohhhhhhhhhh myyyyyyyyyy goooodneeessssssssssssss

"Spspspspspspsp."
"Tis! Mma!"
"Nigh-night, Buzz!"*
My little heroes!
*I call him "Disability Buzz" because Punkin ripped his leg and both wings off within a week of purchasing him. Since then he hasn't tried to "uh-oh! broden!" him any further. Maybe he's just used to having friends with special needs???

Saturday, July 5, 2008

Last night was very quintessential American. Five driveways full of neighbors and friends eating homemade seafood eggrolls delivered by a very sweet woman across the street who I'm not sure understood more than my big smile when I thanked her, five driveways popping off firecrackers and later fireworks almost as big as the ones downtown, five driveways enjoying the freedoms and blessings of our country -- not ignoring our current big ticket issues, but knowing that we got a good thing, baby. A real good thing. Later we huddled, with sweatshirts on, around a fire in my parents' backyard, roasting marshmallows for s'mores.

In all of this I simultaneously missed Punkin and was relieved he was happily snoring away in Indiana with Oma and Auntie, who picked him up Thursday afternoon from preschool. It sounds like they are having a good time. Now, on Thursday night Auntie thought it was super cute that Punkin was being lovey and attentive to her. Come Friday afternoon, however, the description turned from "mini me" into something along the lines of "little leech." I think Auntie needed a nap.* =)

Because I am a bad blogger, I do not have any fourth photos to show you. I was a little depressed last night that I didn't have my new camera not only because I was feeling nostalgic and sentimental, but because it has a fireworks mode and a burst mode I have been dying to try. Sigh.

All in all, I am having a restful respite weekend. I need to clean the apartment more, something I was sure I would accomplish Thursday night. Instead I watched a lot of grown-up tv before the Tall Guy and Lola stole me away for a night of karaoke and the game Catch Phrase, during which I was apparently being a tad overzealous.

*I have to say that because I know it peeves her off even though it's what she says to me all the time. "You're crabby. Go take a nap!"