Tuesday, December 30, 2008

board games played this week: 3*

So much to say. Tonight I gave Punkin his first dose of Clonidine. Oma, Punkin, and I went to the Fragile X Clinic in Chicago yesterday. We met with one doctor, a pediatric neurologist who is an expert and a major researcher in FXS and FXTAS. She was very nice; Oma and I talked with her for nearly 3 hours. Punkin, on the other hand, pretended she didn't exist. I wasn't sure if I should 1) shrug and say, "Well, this has been one of the most stressful weeks of his life.** What should we expect?" 2) be mortified at his blatant rudeness or 3) laugh. What I ended up feeling was a mixture of relief that she saw some of the bahaviors most doctors haven't and sadness that she didn't have a chance to fall in love with my sweet, funny guy. Seriously. He didn't even say "Hi guys!" or "Ta-DA!" He pretended to not know his body parts, his colors, his NAME. The doctor definitely knew he was being OPPOSITIONAL. She said OPPOSITIONAL. About my BABY. Jerk. =) She also said he probably wouldn't show his true abilities on most tests and thinks he has a good prognosis for the future. It was nice to hear, and overall a good visit.
A few other exciting things happened this week, most notably when my car had to be towed out of my parking lot because my landlords can't seem to find someone competent enough to put salt on the hill. But I'm over it. Punkin handled it quite well; the Buzz Lightyear Flashlight I, err Santa, brought helped distract him.

Speaking of presents, we got some awesome ones today. Lion sent me this piece (which brought tears to my eyes because the photos are from her visit) as well as a plush Buzz Lightyear for Punkin, who went around all afternoon saying, "Foo Fifinnity nand NEENYEOND!" SOO funny.



His other set of great grandparents sent a light-up drum set. Haven't put batteries in yet. I'll let you know how long it takes before I take them out again. His OT actually recommended one of these (but in a smaller form), so we'll see if he likes it or if it's too loud.

We really had a pretty simple Christmas. I got him one of those toys where you have to press a button or turn a knob to make a character pop up. This one is Sesame Street themed and sings short songs, too. And Oma and Opa got him a giant magnetic dry-erase board so he can play school. He loves to put magnetic letters on it and use markers to write just like his teacher.

OOHH, We both got our hair cut! I'll post a pic later. My camera's still broken and I had to use my old one for the above photos. Mine was long enough, and I cut enough off, that I was able to donate it to a cancer foundation. It went from the middle of my chest to now just above my shoulders. I feel older now and less like a head of great hair walking around on a person and more like a person walking around with a great head of hair.

* I do not do bored games, I mean board games. Too much sitting an strategizing. And what if I hurt someone's feelings when I give them my "skip" card? No thank you. But it made my sister happy.

**This was the most stressful week of his life because Great Grandma and Great Grandpa (FX Carrier) came to visit with Great Great Uncle Bill (FXS). Then 21 (?) people from my dad's side of the family came to visit a day later. It was a little loud at Oma and Opa's house. That in addition to being away from school and out of his bedtime routine wore on him, though he handled it very well I think. By the last night he was making himself vomit and his ears were a constant fiery red (a sign of hyperarousal). But he has asked for his "friends" a few times since -- so I know he had fun.

Sunday, December 21, 2008

An email to Punkin's teacher and speech pathologist:

Punkin and I were watching a Winnie the Pooh show on The Disney Channel this
morning. It was about a lost reindeer needing to get back to the North Pole.
Anyway, all the sudden he goes, "Look, Mom! It's Santa!" I seriously didn't know
if he knew who Santa was, even though he watches Christmas movies ALL year.
Also, I think L mentioned this at the IEP, but I had never heard it. He looked
at his school picture and said, "Me. Punkin." And I still thought it was awesome
that when I brought in the lunch cart to P's room on Wednesday (usually E's
job), he said, "Uh oh. Mom, where's Mr. E?" There were some extra syllables in
there, but I don't think they were suppposed to be words. It was, "Where da da
da da Mr. E?"

Thanks for letting me brag.

Erika


What I didn't tell them was that on Saturday after this cute little revelation about Santa, Mr. Punkin turned into the Brat of the Century. Oh my. He and I got ready and drove to Oma's house to pick her up. Silly me, I forgot to warn him that we weren't going inside. Instead, Oma came out to our car and we drove to Target. He never actually said he wanted to go inside, but it was pretty clear that he was pissed. Every time Oma turned to talk to him, he yelled, "STOP IT!" and after a while refused to look at her at all. He fussed and hit himself and threw toys the entire 15 minutes to the store and then flopped around like a fish once we got there. Then on the way back, he said, "Downstairs," meaning, 'Let's go downstairs at Oma's and watch A Bug's Life.' So we did. And all was well again. Until he realized he was extremely tired from not taking a nap, grabbed his coat, and informed me that it was time to go home.

Friday, December 19, 2008

snow day!

Snow days aren't necessarily my favorite because I don't get paid for them, but it's nice to be home with Punkin when we both feel good -- especially before the craziness of Christmas rushes in. I even made pancakes and cheesy eggs this morning. I totally win extra points for that one.

Punkin's IEP went very smoothly yesterday, even though the papers we were looking at were a rough draft. His teacher, his school-based occupational therapist (OT), and I had sat down Wednesday to discuss a sensory program that would be included in her report, which is part of his IEP.


Since Punkin goes to the before-school program every morning from 7-8, he's already hyperaroused when he enters his actual classroom. But since I'm with him for that hour, I can implement some of the things both of his OTs suggested even though it isn't actually IEP (or school) hours. Basically we're going to do some large motor/deep pressure work in a game with other kids, then he goes for his usual walk with another teacher to pick up the breakfast cart -- although we will now incorporate some heavy work such as pushing a buggy full of wooden blocks, and then he will come back and have computer time for visual stimulation. The hope is that this will alleviate the self-stimming he's engaging in after breakfast, specifically when he bangs Duplo horses against the table so he can 1) hear the noise 2) feel the input in his joints and 3) watch their heads bob up and down.


He will then receive a break of some sort about every hour. At first we considered recess to be a break, and then the more we thought and talked, we realized he needs a break FROM recess, which is generally indoors these days. So at first the large motor time is pleasurable because he can run and yell, but then he quickly becomes overwhelmed when all of the kids from the other classes join his class. When I've been in there, he often lays down in a corner to escape/watch the madness. Our thought is to try and get him out of the gym with another student and "squish" him under a mat or a bean bag chair for a few minutes. Then he's getting a break from the gym itself as well as some much-desired deep pressure.


Now, his speech pathologist, his teacher, and I also met a few weeks ago to talk about his progress and how to better meet his needs. Our consensus was that video modeling would be our best bet for teaching play skills, social skills, and a slower rate of speech. I'm very excited about this -- I think he will really respond well. The only hang-up is trying to figure out the scripts and getting permission from parents to use their children to act out the scenes.


So what are his goals? Well, I do not envy them having to come up with these. When we're focused so much on functional behavior, it is difficult to come up with academic goals that aren't the same as every other preschool child. However, there are some areas, such as prewriting, where he clearly struggles. So one goal is to make a circle, a diagonal line, and a plus sign. He can scribble in a circular motion, but doesn't have a clear stopping point. This is where we will use Mat Man to help him be more motivated to work. At this point, the word "struggle" would be a gross understatement. Even with his other OT, in a fun room in front of a MIRROR covered in shaving cream where he could STAND UP -- didn't have to sit -- he still pitched a fit about using "Mr. Pointer" to make a circle.


The next goal is about play skills. His teacher would like him to try at least 2 appropriate attempts at play with a child. So when he runs up to a kid and says, "HI!" and they do nothing, she would like him to then try again by say, bringing them a toy. This is one example where the video modeling will be implemented.


The next goal is somewhat related in that it has to do with play. She wants him to explore toys and figure out how they work. Right now if he saw a new toy, he would pick it up, bang it against a hard surface and/or make it spin, and then throw it. Not so much a desirable behavior in any situation.


His speech goal is to have his intelligible speech increase from 60% to 85% (with a familiar listener). In addition to video, we are going to model a slower rate of speech, use fill-in-the-blank sentences (I want ___. The book was about a ___.).
One big thing we talked about with his OT was his constant chewing on his hands. I haven't been too concerned, although he sometimes gags himself (on purpose) and leaves bite marks (though doesn't break skin). I never thought about how when he bites his hand, though, that it releases endorphins -- he's not just getting oral input this way. So she suggests I use no verbals and just bring his hand down and replace it with a chewy tube. And yes, this will take constant monitoring. So far I've been cutting the chewy tubes so he doesn't gag himself with them, but she's going to order the ones that are in Q shape as well.
And finally, we are going to meet at least two more times to write a behavior plan. I'm glad we're breaking this all up -- my goodness! His poor teacher deserves a foot massage and a chocolate bar the size of Mount Rushmore.
Do you love the photo? It's from his first winter -- I think he was 10 months old.

Wednesday, December 17, 2008

status report

stomach: still queasy

acid reflux: raging

punkin: threw up today at school, possibly because an adult he felt uncomfortable with was too close to him. she's a .... vivacious? person and sometimes that's too much for people like us.

sensory diet: actually in the works. punkin's teacher, school OT, and I met today to discuss it. we're all finally in agreement. i think. more on that when it's finalized. if i forget to tell you and you want to know, ask me.

mommy brain: severe case. shall i define mommy brain for you? AHEM. the inability to focus on comparatively minor details such as the location of one's purse due to the influx of information from the environment, your child, and his other caregivers or teachers which is battling with your own core of knowlege and a mounting list of chores. symptoms include, but are not limited to the following: forgetting how to spell (i will choose another word rather than try to figure out how to spell the one i really want to type); leaving your son's backpack on top of the car so that it blows away into the snowy road and some kind soul hangs it on a fence nearby for you to retrieve 15 minutes later when you realize it's missing because your car ran out of gas and you are looking for his ducky blanket which should be in his backpack, loss of ability to fall asleep even when you really, really, really want to; and not knowing where or who anyone is (anyone. even yourself). usual onset: pregnancy. medicate with: wine. no cure -- once they take your brain cells, they are gone forever.

iep: tomorrow. one of the goals (sorting) has been met, one (prewriting strokes) has been partially met and punkin's teacher has a good approach for rewriting it, and one concerns his behavior -- ability to calm, ect. this, as you can guess, continues to elude him, and us. punkin's preschool uses handwriting without tears in addition to their math and reading curriculums. anyway, handwriting without tears uses a guy called mat man to help kids learn how to draw a recognizable object (a person). while it seems lofty to ask punkin to make mat man, i think she's right that he may respond more positively to this approach because he understands that he is building something -- there's a purpose, an end product.

oma and opa: best parents ever. they helped take care of punkin, drove him to school for me after i fainted (i'm sure i was just dehydrated), cleaned off my car multiple times, filled said car with gas, brought me water and blankets, and caught the virus! opa was sick for about 3 hours (jerk!) and oma is still recovering.

sleepy time time: has arrived

Saturday, December 13, 2008

If you haven't met Punkin in person lately, I suggest you check in with an episode or two of Curious George, aka: Punkin's new role model. George is so endearing; he is the heart and soul of toddlers. Also, he climbs on, well, anything with absolutely no fear or sense of consequence, like the child I found on top of the television Thursday. I've often said that Punkin clings to me much like those stuffed monkeys with the velcro hands and feet, and George is always sitting on the shoulders of The Man with the Yellow Hat. There's also the issue of being adorable beyond all reason even when he's naughty. And rather than stopping there, Punkin has -- of course -- started talking like him! As if we didn't have enough speech problems! Now it's all, "Eee eee, ahh ahh." So hilarious.

Punkin's also obsessed with stethoscopes. He's liked them for a while, but now he just carries them around touching everything. And when he gets to a person, he says, "Buh buh duh duh." At first I suspected this resurgence of interest in the stethoscope stemmed only from watching Curious George Goes to the Doctor, but his teacher told me she showed him "buh duh" the other day.

In messier news, an experiment of sorts was had involving Punkin and an orange slice. Maybe it's coincidence and maybe it's not, but he has been sick all day. I may never know what's causing the yuck, but he will never have an orange again if I can help it.

UPDATE: It's a virus. I found that out at 4:38 this morning. Need I say more?

Thursday, December 11, 2008

Maybe it's Christmas coming up, maybe it's some temporary changes at work, maybe it's the insane cold that isn't even that cold yet, but this week has just been long and my patience has been short. Today was a much-needed success, however, because Punkin wore the same pair of undies all day! This probably has something to do with the fact that he refused to poop at school, but I'll take it. I've been going back and forth about whether or not to have him just wear pull-ups but continue the same routine. But let's face it, the threat of an accident in underwear is a much stronger incentive to stop working and run to the potty than the threat of a wet pull-up. And there are some ideas that I was given by the behavioral psychologist last year that may need to be implemented.

In other news, he chewed through Woody's foot today, causing an avalanche of tiny white beads. I'm just hoping he didn't swallow too many. =) I'd share a picture, but my camera was dropped and now the door to the memory card and battery won't open. So I need to see if the manufacturer will fix it or not. I'm guessing not, but I will try. I purchased an extended accident warranty, though, so either way I should be okay. SHOULD be okay.
I just need prayers and warm thoughts, I think, because I'm going through the cycle: charge full speed ahead, burn out, get some contentment, feel guilty, charge full speed ahead. And right now I'm feeling guilty. I don't play with him enough, I don't work on life skills enough, I don't know how to help him cope with his emotional and sensory needs. And I know it's irrational. I KNOW I'm doing my best and that most mothers and fathers must feel this way at some point. I think this time of year is hard. It's IEP time, Christmas, and birthday. I'm faced once again with how far he's come, where he hasn't grown, and how he compares to his peers. The toys I can't buy because they are inappropriate. The traditions he doesn't understand. The food he won't eat. The difficulty of too many people and too many demands. And then there's the
appointments with the doctors.
*Sigh*
I think staying up until 11pm blogging probably doesn't help, either. Good night!

Tuesday, December 9, 2008

I HATE POTTY TRAINING. He peed on my blanket. My BLANKET. My special have-to-have-it blue blanket. He knew he had to pee, but instead of going to the potty he PEED ON MY FAVORITE BLANKET. I did find $3 worth of quarters in my wallet, though, so I was able to wash it. Of course that was after I had a hissy fit.

I've had a crazy two days, and I thought many times about how to explain it to my bloggy friends. And now I'm finally just chill and so I'm unable to articulate myself.

Night, y'all.

Saturday, December 6, 2008

i measure up! (aka: p*nis bling)

1. Say one nice thing to a man in your life.
* Punkin, the best part of my day is picking you up from school.

2. List at least six ways that you measure success in your life (or for your blog). In no particular order:
* Punkin is happy and continuing to make progress academically and with life skills.
* I can pay the bills with a job I like.
* I am able and willing to take time just for me.
* I write on my blog regularly and someone reads it. =)
* I remember to put God at the center of my life, and ask for forgiveness when I don't.
* Earning P*NIS BLING. Duh!

3. Assign this award to six other blogs and leave them a comment telling the blogger that you’ve assigned them this award. Here's four good friends:

(Thank you, Holly's Mom and Umma)

Friday, December 5, 2008

i'm almost ready to throw in the skivvies

Or, how many obscure references can I make to BMs and underwear in one post?

The kid refuses to poop in the potty, which is causing ridiculous amounts of laundry. Very. Stinky. Laundry. At $3 per load (HA -- LOAD!), it is not only annoying but a little expensive.

I have one more trick up my sleeve, which is to make a new potty chart specifically for pooping. Somehow I will make a picture that illustrates "dropping the kids off at the pool." I will hang say, five, in a row on the bathroom wall. Every time he goes, he gets a sticker. Then when he gets all five stickers, I will take him to the Children's Museum. By this time I hope he will learn the amazing awesomeness of eliminating into the potty versus the yuckiness of relying on his undie pants.

And in case you're wondering, I tried using a cookie yesterday and he couldn't have cared less. I mean, he loved the cookie but he still messed his underoos later. Since he asks me to go "play" approximately every 5.2 minutes, I'm hoping it will be a stronger incentive.

Otherwise I could use the whole, "poop in the potty or ask for a diaper to poop in" thing, I guess.

Sigh. I mean, maybe he's not ready, which is fine, except that: 1) he wants to wear undies (at least he did a week ago), 2) he brings me his messes, 3) he takes off his wet diapers, throws them away, and gets a dry one and 4) he's dry overnight and for as long as a few hours during the day and 5) he pees in the potty just fine -- he even stands up at school because his friends do. GRR. I know training takes a long time. I also know that I am an impatient person. =) I also believe that when I pray for patience, God gives me situations to practice tolerance, perserverance, and restraint. Sigh again.

Update: He just came in, took off his diaper [he was still wearing from school because they ran out of undies], asked to go potty, and peed. I'm thinking this is mostly a "multisensory processing" type of issue: aka, there are so many things going on at school that he can't clue in to the "need to go" feeling.

ROAR: Apparently, he didn't sit long enough because he #2'd everywhere. I officially throw in the whitie-tightie towel for the night and hand off my child to his respite worker.

Monday, December 1, 2008

dude, he's wearing thomas the train boxer briefs!

I realized I complained and complained about being ill, but never bothered to tell you that I think I'm 90% better now. The doctor gave me a prescription for prednizone and it is working. I still have the regular sinus pain, but I pretty much don't feel that anymore.

In more exciting news, Punkin had two accidents today. Not too bad. Well, 2 and 1/2 -- I caught him mid-poop. (hehehe) I think it's going to be more difficult at school because, well, it's school. I mean, it's about a thousand times more stimulating than home. And he really doesn't want to potty for anyone but me. I think it's because I do the "YEAH!!!" voice and dance.

Speaking of overstimulation, we had another OT visit today. We had to switch OTs because someone had a baby and his other OT is covering her patients. Anyway, she's very nice, but we are kind of starting over again. She assured me that the ideas I had from the conference and from other resources are completely appropriate for him and the process is more about trial and error than anything else. She's going to teach me how to do the brushing and deep joint compression next Monday. And she said the sensory breaks will be at times when he normally starts to lose it -- in other words, it's an inuitive process aimed at preventing meltdowns. I guess I understood it better than I thought -- it just seemed so logical and nothing's ever that simple.

Now I'm used to bodily fluid clean-up, but this time it landed on my couch. So I think it's time to rent an upolstery cleaner, as it's my turn to host Bunco next week. In the meantime, I continue to invest time, energy, and money into the fabulous product that is Resolve Pet Stain and Odor Remover. LOVE it. To which you point out, "But Erika, you don't have a pet." To this I say, "SOMEONE PEED ON MY COUCH TODAY and almost pooped on the carpet. Toddlers and dogs -- not so different, actually."

Sunday, November 30, 2008

a few things

First of all, Punkin's teacher and I are stepping into dangerous waters. She mentioned to me last week that perhaps we should try putting him in underwear after Thanksgiving break. And since he's done so well these past few days, I decided to go for it. He's actually told me he needed to go potty three times today. So wish us luck. I will be packing multiple changes of clothes.



Second, is this Advent Calendar the cutest thing ever or what? Each door opens!!



I had planned on printing off little sayings or activities on pieces of paper to stick inside each box, but we got a paper calendar at church today with the same things. So I just cut up the paper calendar and stuck them inside this one. Seriously, don't you LOVE the doors? It's from Target.

3. Okay, it's snowing and I am not ready. Punkin does not have boots or gloves or a hat. Not that he would tolerate those things, but still I'm supposed to TRY. For real snowing. I had to scrape my car off this morning. I think Auntie brought it with her from Wisconsin, the insane place that was blessed with 108 inches of snow last winter -- and where they predict 150 will fall this year. I love me some Wisconsin and the people who live there, but 15o inches! of SNOW?!

Saturday, November 29, 2008

happy belated thanksgiving!

We went for a walk near my apartment while the turkey finished cooking at Oma's. This is Punkin's new favorite thing -- riding on shoulders or a back.
We went to The Festival of Trees today (Saturday), which is a big holiday celebration that starts around Thanksgiving and goes for a week maybe. Anyway, there are trees to win, trees to buy, and trees for charity. My favorite was the Mountain Dew tree. =)Every tree is different. Some are classic, while most are fun and fanciful. This one was decorated with tiny shoes. Then we saw the gingerbread houses. And the play houses -- I would totally live in this, btw. And Punkin's favorite part -- the train! Then we headed to the North Pole. Santa wasn't there, but there were over a dozen games, including mini golf. We played a couple. We even sat for a story. That went really well.

And finally, we decorated a COOKIE and went home to crash. Punkin's Aunt Emily is here, and he is so excited to be hanging out with her and Oma and Opa. He's also been using the potty at home and in public places, which is awesome. And he's brought me a couple poopy diapers and pooped in the toilet a couple times. Overall, we are making progress, even if it is mostly adult led. To be fair, he has told me ahead of time with words. Often he says it with gestures (read: taking his diaper off), so it's harder to pick up on.

Thanksgiving has been a blast. Very relaxing. Oma cooked up some fantastic food. On Friday we went shopping for a few hours and bought a couple things and then Em and I went to a movie at the cheap theater while Punkin had respite. It's $5.50 for a ticket, soda, and popcorn. We saw The Secret Life of Bees and I highly recommend. Oma said the book is really good, too.

Now we are just hanging out. Punkin is very emotional, so I think he's running out of steam. Since we slept at Oma's two nights in a row, he feels a little "off" I think. Holidays are so complicated, even when they're easy. =)

Tuesday, November 25, 2008

whoo-hoo!

I finally checked the voicemail on my landline and the Fragile X Clinic in Chicago can see us on December 29th! This is a huge improvement over April of 2009. When I first called them I didn't think waiting until spring would be a big deal, but now I am really anxious for advice to help him control his emotions. December 29th will be crazy because family will be here or maybe just leaving, but it's ideal for me because I already have that day off of work.

His speech pathologist contacted the Fragile X Foundation for some advice. They suggested a number of things including video modeling, which I had read about before but never tackled because Punkin seemed a little young. Regardless of whether or not we end up using this approach at school, I am excited about the possibilities.

Looking for the hard copy of this article also brought me to my conference notes. Here are the ones I typed up, for what they're worth. Keep in mind that I am addressing his teachers.

Autism Spectrum Behaviors (in FXS kiddos and adults) are often a result of anxiety and/or hyperarousal. Stress increases physiological responses: fight or flight, cortisol (stress hormone) levels, and sympathetic activity -- resulting in erratic behavior and poor language

To avoid anxiety and hyperarousal:

Don’t Impose yourself in any way (physically, verbally)
Exaggerate your
affect without overstimulating (as we've seen, though, this sometimes produces unwanted effects)
Facilitate -- him initiating and him responding without demanding (use fill-in-the-blank sentences)
Modeling -- through self-talk
Slow -- give him more time to respond
Look for signs of distress:

Increased perseverance
Red ears/face
Gaze avoidance
Shut down (I think
of the kicking, hitting, refusal to sit on the carpet, head banging, ect.)
To help him regulate:

Deep breath modeling
Don’t be physical (you know what he can handle and when -- he trusts you by now)
Decrease your eye gaze
Model
self-talk
Cozy corner
FX Kit (will explain later)
BOB Box (will explain
later)
Cozy Corner: A small space with favored items

BOB Box (Biting Options Box)

Always available
Examples of contents: Gum, chewy foods, chew tubes, sour
candy, drink with a straw or a water bottle you have to suck on, pop rocks and
anything he is allowed to bite HARD.
FX Kit (This is more for me)

Emergency items
For him, this would include goldfish crackers, a chewy tube, a juice box with a straw, ducky, maybe a small Woody doll, Sour Patch Kids (candy), Brown Bear Brown Bear What Do You See?, a photo album with familiar photos and people. They also suggest a Coping Keychain -- a stretchy keychain with a mini schedule on it -- and a bar of chocolate for mom.
This is the basics of a sensory diet. It has to be individualized for each child. The purpose is to decrease defensiveness and to maintain an optimal state of arousal across a long period of time (the school day).

Movement: swing, dance, rock, explore body positions,
Deep Sensory Input:
pushing, pulling, lifting, carrying
Fidget Toys: large number of choices (ducky is fine, I think, because he doesn‘t see it as a toy), they suggest letting all the kids have one, but I know that it’s clearly easier said than done
Sometimes take away: headphones, ear plugs
Sensory choice board: can initiate on own anytime (I
don’t think he is ready for this, I think we need to structure the breaks into
the day or else he will be requesting them all the time.)
“Brushing” was also suggested for deep pressure as well as oral input (sucking, chewing, blowing, licking)
Modifications to the environment may need to be made -- low lighting, ect.

Also, there are quite a few references in my notes to simultaneous learning versus sequential learning. From what I understand, this style of learning is different than most people. People with FX need to see the entire process, including the end product, before beginning the process. So they suggest having mini schedules for things like carpet time and group activities. For example, he needs to see all of the pictures for the speech lesson all at once so that he sees that there’s a beginning and an ending. I know you have something like this for toileting, but maybe he could have his own copy to hold onto or have in the bathroom next to the toilet.

that's what i get for losing track of time

punkin has been doing really well sitting on the potty lately. and he's getting better about it at school, too. he's dry in the morning and is dry at home as long as i remember to take him. he has some subtle cues that he needs to go potty, but really no verbals. the real issue is with pooping in the potty because it involves a certain level of commitment and concentration.

well, he definitely knows that he's not supposed to poop in his diaper. in fact, he definitely doesn't want poop in his diaper at all. BUTT he can't quite make the next step of sitting on the potty. the other day it ended up on the floor. today, well, i was cooking pork chops and heard some swishing and rustling. swishing and rustling aren't expected when your son is supposed to be playing with his kitchen set and watching curious george. i'm used to banging and "moooommm! more juice?"

he's not in the living room. he must be in the bathroom. oh, no. it's 6:00! "did you poop? do you need a new .... oh! let's not do ... oh, no. honey, no. okay. *sigh* alrighty, we're gonna need some towels and some plastic bags."

he was swishing his dirty diaper around in the toilet. and it seems somehow all of the others in the trash got a soak.

nice.

Sunday, November 23, 2008

have you ever

had liquid ibuprofen spit in your eyes? i do not recommend. in an attempt to avoid this from happening in the future, i will follow my gut feeling and give him any medication before bed while he is still lucid. because relying on him to be compliant during a mid-sleep screaming session is just illogical.

i'm not sure exactly what's ailing him. i assume that he is having the beginnings of my plague. he had a low grade temp for a few hours saturday, but then has been fine since. he's running around and eating and everything, but he's also super emotional. and by super emotional i mean gagging himself to the point of vomiting. in the car. GROSS!

in all honesty, though, he's been emotional for weeks. one minute he's cuddly and laughing and the next he's throwing things and smacking me. *sigh* i just want him to be happy. i have a hard enough time managing my emotions, and i'm 26! (no comments needed, oma)

AND, of course, he failed his hearing screening. so i have a call in to his ENT about that. hopefully it was a false reading because he couldn't sit still enough. *forced hopeful smile* it just never ends, does it?

my parents once again saved the day. i've been having a drama queen kind of day, and oma has been very patient (thank you) and made me pancakes. and opa figured out that the reason i've been freezing (and therefore incessantly checking my body temperature) was because my furnace wasn't lit. DOH!

and i am definitely having some electrical problems that need to be addressed. so this is the first test to see if i've picked a decent person to rent with. unfortunately it's kind of a big test. one of my outlets just stopped working -- of course it's the one with my tv, dvd, phone, and computer. there are two others that also worry me a smidge. so we'll see what they say.

all in all it was a boring weekend, which i suppose we needed. let's hope this week is healthier, no? hope your week is healthy!!! happy monday?

Friday, November 21, 2008

best comment ever

I'm happy to report that I went to work today. I almost left a half an hour later, but I went and stayed. And then I decided to cancel respite and hole up in the apartment for the rest of the night. This comment, however, made my day, after the rest of you SIDED WITH OMA???:

Okay, sorry to write that I have minimal advice to offer, yet thought you just might want feedback from one more aunt! I think you should do what they say, yet top it off with a bit of red wine just before bed. Praying for you!

Love, Aunt Kathy

Now, that I can drink!

Wednesday, November 19, 2008

srsly?

i am clearly dying of the plague, so i don't have much energy to write. oma keeps telling me to drink hot water to soothe my throat and clear the gunk out of my sinuses and chest. just hot water. no chocolate. no tea. no flavoring of any kind. just hot water. tell me that is not disgusting. oh, excuse me, she said i could add a slice of lemon. because 1) have lemons and 2) am healthy enough to slice them. i have a bad history with slicing lemons at a restaurant in high school and i'm not about to make a special trip to the store in the 20 degree weather to buy ONE lemon to "spice up" my tepid water when i'm wasting away from the plague.

i must go to sleep now.

the doctor told me to call if i get a fever. never mind i've felt like i've had a fever since monday night even though i apparently don't. so now i am taking my temperature every twelve seconds and guess what? it's different every time. 100, 99.5, 98.2.

funny pictures of cats with captions
more animals

Tuesday, November 18, 2008

it's bad when you miss tv for sleep

It's official: I'm sick. How do I know? Besides the hacking cough, sore throat, and inability to speak, I actually fell asleep at 7:45pm last night -- meaning I missed both Prison Break and The Hills. That is serious!

So I dropped off Punkin at school this morning -- he slept until 7am! -- and went to the doctor. I went there instead of calling because I seriously couldn't speak and I was hoping (and it worked) that they would squeeze me in right away since I was there so early. Doc says it's a virus and I just need to rest. Blah. Last winter I lost my voice 4 times, so I really hope this is not the beginning of a very quiet (get it?) cold season.

I do kinda miss him, though ,after being home alone all day. But seeing as how he slept so long, part of the time in my bed, I have a feeling he'll soon be just as uncomfortable as me and we'll be spending TONS of time together. Fun, fun, fun!

Sunday, November 16, 2008

weekend update

1. He took his diaper off and pooped on the carpet. He hasn't done this since July, when we came scarily close to being close to becoming potty trained and then we went on vacation and he regressed into refusing to even sit on the toilet at all.

2. Somehow he's discovered he has underwear in his room and insists on wearing them, even though he clearly isn't ready. He put them on, though, and he looked so cute. Oi.

3. Disability Buzz is missing. =(

4. I love infomercials about kitchen stuff. There's a mini-infomercial on right now about a vegetable peeler and I'm totally mesmerized. Even though I know a girl who sells way better kitchen stuff (ahem, me) .... Ooohhhh SIX things for $14.99!!

5. I have a cough, but only when I'm attempting to sleep. No other symptoms, just a cough.

6. I bought four pairs of pants last week. They are three different sizes, which wouldn't be strange except that they are all FROM THE SAME STORE. Seriously, what gives?

7. I wasn't going to say anything because I'm immature and I can't talk about Woody from Toy Story without heading straight into the gutter, BUT, Punkin had five Woody dolls. Tiny, Little, Medium, Big, and Mega. (Notice how I stopped saying Woody after those adjectives in an attempt to stop the gross google searches?) Anyway, two of them (Little and Medium) are missing. I imagine them off with Disability Buzz at the local Happy Joes Jungle Bungle -- even though Punkin's never been there --dreaming up ways to make it back home. Do they know we MOVED?

8. It's going to be Monday soon. Are you ready?

Thursday, November 13, 2008

50 billion questions for me

It seems my life lately is overwhelmed with questionnaires about Punkin. Many special-needs mommies have seen plenty of these rating scales for general development, sensory needs, behavior, socialization, and speech. Some have three options 0: never true, 1: sometimes true, 2: often true. Others use percentages: Given the opportunity, your child would respond this way 0% of the time, 25% of the time, 50% of the time, 75% of the time, or 100% of the time. Pages. Pages and pages of statements and numbers. And if you answer them inaccurately, your world WILL implode.
Let me give you some examples as well as some of my thoughts:
Poorly coordinated or clumsy. Not as much as a year ago.
Wants a lot of attention. Duh!
Stares into space or seems preoccuppied.
Hits others. Only three times today.
Holds his breath. When he takes a drink. Does that count?
Destroys things belonging to his family or other children. Only if it's made of paper.
Afraid to try new things.
Has difficulty paying attention.
Walks on toes.
Withdraws from splashing water. Definitely not. Doesn't know he should.
Touches people and objects to the point of irritating others. He's climbing on me again.
Doesn't seem to notice when face or hands are messy.
Craves certain foods. Do hot dogs count? Seriously every day three times a day.
Tires easily, especially when holding a particular body position. Sitting on the carpet....
Appears to enjoy falling. Gotta blog about this.
Prefers quiet sedentary play (TV, computers, books) Only on days ending in 'y'.
"On the go." FIVE FIVE. FREQUENTLY. ALWAYS TRUE.
Wanders away. Gotta blog about that girl who's making him run away with her at recess.
Stares intently at people or objects. When it's crowded.
Has temper tantrums. That's one way of putting it.
Poor frustration tolerance. "MONNA! WHAAAA!"
Has fears that interfere with daily routine. Maybe it's more of a fear of breaking routine?

And even with all 125 (!!) questions on one of the surveys and 75 plus a word list on the othethere was still no "refuses to sit on cushions/leave cushions on a couch or chair" or "prefers sitting on potty seat on top of de-cushioned couch to lounging in a bean bag."


But there was a "develops unusual rashes." Any takers on solving this mystery? Not hives. Only on the backs of his knees.


Doesn't bother him at all, which I suppose doesn't mean much considering he walked around for an entire school day with a sock shoved in the toe of his shoe --which made him limp which made me take him to the chiropractor who found the sock after adjusting his little ankles and immediately crowned me Mother of the Year.


Oh, and the falling. So he likes to fall when I am trying to make him hold my hand. This is an escape mechanism. Then he starts falling off his bike at recess and pulling the bike down on top of him, then yelling, "Okay?! Okay?" to whoever is listening. Recently he's started laying on his side at the top of the stairs and letting himself bounce all the way to the bottom. Luckily there are about 8 steps and they are heavily carpeted. The question: is it attention seeking or deep pressure seeking? I think the bike is attention-seeking. But since I've given no notice at all to him falling down the stairs, I'm thinking that may be sensory related. I'm afraid to address it for fear it will increase exponentially.

So why am I filling out all of these forms? Because I am a glutton for punishment. I signed us up for a research project at the same time we started seeing a new OT. And with doctors come pages of multiple choice. *Sigh* I have to say the Sensory Profile surprised me a bit. I didn't realize quite how screwed up his sensory system is. We got the results today. The biggest difference between him and his peers is his social/emotional response to sensory input.

But the results may have to wait another day. I'm sleepy and I'm not sure I understand them beyond that he doesn't react appropriately to stimulation, whether it's a lot or a little. But we already knew that.

Sunday, November 9, 2008

i'm tired

I have to do something about our weekends; this is getting ridiculous. I need to enforce our schedule. My son is losing his mind and I am losing my patience. The words that describe a good portion of our weekend: head banging (most notably on the mirror in the dressing room at the mall), slapping himself, slapping and kicking me, throwing up [from crying], throwing objects [out of anger], destroying anything paper, screaming, crying, ect. I am tired. And I feel a little lost. I want to help him, and sometimes I just don't know how. He has been more cuddly than usual and the time change is still bothering his sleep patterns, so maybe he feels lost as well.

Yesterday, after doing my part for the economy by buying lots of new clothes, we saw Madagascar 2: Escape to Africa with some friends. He laughed SO hard his body shook and he snorted. He's still asking me for popcorn when we get in the car, so I think what he really means is, "To the theater, James!"
In more funny news, I braved the wind and cold (I know it is warm compared to where we are heading, but I still hate it) to go to the store for pull-ups. Now Punkin refuses to use the potty seat I bought him, but I think it's because it's uncomfortable and it is the top to the plastic kiddie potty and he knows it's really supposed to be on that potty. Anyway, I will get to my point now. I saw a potty seat with Elmo on it, and he was quite excited. So excited, in fact, that he sat on it in the cart and held it to his chest the entire way out to the car and on the way home. If I could only record people's reactions and post them here. =)

because i love books, dylan, and social history

I read parts of this book in college, and I've been meaning to pick it up again. I finally had to dig around in a very heavy trunk of books in my bedroom the other day and found it. I highly recommend it, especially if you're a young person like myself.

Thursday, November 6, 2008

a little sentimental

Number of my shirts he's ripped in the past month: 3
Number of times he's hit me in the face in the past week: 2
Number of times he's woken me in the middle of the night since birth: 5,322,968
Number of oreos he's stolen off the top of my Whitey's milkshakes: 12
Number of times I've replayed Mickey Mouse's Christmas on a Saturday in June: 4,322,097
Number of times I've yelled, "DON'T DRINK THE BATH WATER!" this week: 17
Number of actual around-the-neck hugs I received yesterday: 2 (!!!!)
Number of emergency room visits: 1
Number of times he's been under anaesthesia: 4
Number of times he made me throw up when I was pregnant: 5,432
Number of times I was puked on last time he was sick: 6
Number of times he said my name today and then when I said, "What, honey?" said nothing: 9
Number of times he threw his new portable dvd player/got a time out today: 3
Number of diapers I've changed this week: 20
Number of times he shrieked when I told him, "No hot dogs" yesterday: 5

Number of times I thank God for completing my picture: limitless.

Wednesday, November 5, 2008

curious george never hits the man with the yellow hat

Major issues at home today. He was just calming down after 2o minutes of screaming something about a bath and I don't know what and banging his head on the wall and kicking me and hitting me in the face and throwing my things around and sobbing to the point of gagging WHEN..... Oh, that's cute. He wants to sit in his chair and watch TV. And he got a chair for me! Sweetie!
Oh, the table, too... Does he think ....

Yes, he does think we're eating in the living room. Well, the screaming WAS over for the night. I guess it starts again in 5..4...3...2..

happy november 5th

Something about sitting at a folding table in a gym, with a golf pencil and a list of names alongside ovals needing to be filled in-- sigh -- just feels so empowering. It's a moment where being one person means a lot. I'm young, and I have been indifferent in the past. But yesterday was exciting and inspiring. I skipped out of the polling place -- where, by the way, I didn't wait one second in a line. Every election is a piece of history, some more profound than others; it is a great privilege not only to be witness to this history but be a participant in history. Not by which candidate's name I circle, but by voting at all.
McCain's speech was remarkably good, and you should visit my friend's site to read a much more eloquent depiction of the night than I will provide.
McCain said:

Senator Obama and I have had and argued our differences, and he has prevailed. No doubt many of those differences remain. These are difficult times for our country. And I pledge to him tonight to do all in my power to help him lead us through the many challenges we face.

I urge all Americans ... I urge all Americans who supported me to join me in not just congratulating him, but offering our next president our good will and earnest effort to find ways to come together to find the necessary compromises to bridge our differences and help restore our prosperity, defend our security in a dangerous world, and leave our children and grandchildren a stronger, better country than we inherited. Whatever our differences, we are fellow Americans. And please believe me when I say no association has ever meant more to me than that.

Not necessarily so different from the message Obama gave on March 18. Yes, McCain's speech is about supporting the president and Obama's is about race relations. The main point in both, however, seems to be that we all have to find common ground in order to fully succeed.

I would not be running for President if I didn't believe with all my heart that
this is what the vast majority of Americans want for this country. This union
may never be perfect, but generation after generation has shown that it can
always be perfected. And today, whenever I find myself feeling doubtful or
cynical about this possibility, what gives me the most hope is the next
generation - the young people whose attitudes and beliefs and openness to change
have already made history in this election.

There is one story in particularly that I'd like to leave you with today - a story I told when I had the great honor of speaking on Dr. King's birthday at his home church, Ebenezer Baptist, in Atlanta. There is a young, twenty-three year old white woman named Ashley Baia who organized for our campaign in Florence, South Carolina. She had been working to organize a mostly African-American community since the beginning of this campaign, and one day she was at a roundtable discussion where everyone went around telling their story and why they were there. And Ashley said that when she was nine years old, her mother got cancer. And because she had to miss days of work, she was let go and lost her health care.

They had to file for bankruptcy, and that's when Ashley decided that she had to do something to help her mom. She knew that food was one of their most expensive costs, and so Ashley convinced her mother that what she really liked and really wanted to eat more than anything else was mustard and relish sandwiches. Because that was the cheapest way to eat.

She did this for a year until her mom got better, and she told everyone at the roundtable that the reason she joined our campaign was so that she could help the millions of other children in the country who want and need to help their parents too. Now Ashley might have made a different choice.

Perhaps somebody told her along the way that the source of her mother's problems were blacks who were on welfare and too lazy to work, or Hispanics who were coming into the country illegally. But she didn't. She sought out allies in her fight against injustice.

Anyway, Ashley finishes her story and then goes around the room and asks everyone else why they're supporting the campaign. They all have different stories and reasons. Many bring up a specific issue. And finally they come to this elderly black man who's been sitting there quietly the entire time. And Ashley asks him why he's there. And he does not bring up a specific issue. He does not say health care or the economy. He does not say education or the war. He does not say that he was there because of Barack Obama. He simply says to everyone in the room, "I am here because of Ashley."

"I'm here because of Ashley." By itself, that single moment of recognition between that young white girl and that old black man is not enough. It is not enough to give health care to the sick, or jobs to the jobless, or education to our children.

But it is where we start. It is where our union grows stronger. And as so many
generations have come to realize over the course of the two-hundred and twenty
one years since a band of patriots signed that document in Philadelphia, that is
where the perfection begins.

Thursday, October 30, 2008

more lessons learned

My neighbors must think I'm torturing the kid. He cried for at least 15 minutes last night over dinner rolls. Dinner. Rolls. Dinner ROLLS. And it's my own fault. See, everything was ready except the bread, because my new (to me) oven has to be turned to the bake setting in addition to the desired temperature in order to heat up. And, guess what? You got it! I forgot to set it to bake. But I remembered to put the butter on the table. And you better believe Punkin knows what's supposed to go with butter! He immediately asked about it, and I calmly pointed out that the bread just wasn't ready yet. Why didn't I just nonchalantly say, "Oops! We don't need that!'? I don't know. WHY DIDN'T I? Cause you know what happened? "WHHHAAAA!!!!! (smacks self in the head repeatedly) BUDDER! BWEAD! (throws fork, pushes plate away, attempts to dump out milk) WAIT! (knocks over chair) WHAAA!!! NOT WEADY YET!! WWHHAAA!!!" I calmly explained that if he just nibbled on his apple slices, veggies, and casserole, the bread would be finished in a snap. "WHAAA!!!" So I ate my dinner while he cried. And I made sure to mention, when the rolls were done, that since I had eaten my casserole, I would get a roll. And yes, being the evil mother that I am, I ate it right in front of him as he screamed. How did this end, you ask? In me practically shoving a piece of casserole in his mouth, which eventually made him stop screaming when he realized, "Oh, ya, I like this!" So he ate a few bites and got his stupid bread with butter. And when he ate the top off his bread, he got more butter. 'Cause he said please.

Tonight was much happier, even though he ended up eating almost nothing for dinner. The 30th is always Trick-or-Treat in our city. I wanted REALLY badly for him to be Woody this year, but I couldn't find all of the pieces -- specifically boots to fit him -- to make it work. So I picked up a Buzz Lightyear costume instead. Oma tried her best to snap a photo of him with his pumpkin pail, but he wouldn't stand still for a second! At first he didn't quite understand the arrangement; but after a few houses he was on a roll. It pretty much went like this: "Hi, guys! Look 'em!" as he held up his pumpkin pail as if to say, You wouldn't believe what people will do just to see this thing. It's magic. Grown-ups are kind of naive, man! He stayed out for over an hour, but when we got back to Oma's he was so tired he wouldn't eat anything. Note to self: eat dinner first next year. Oh, the small wisdoms we learn!

Don't let your kid take off his pull-up on your bed. He WILL pee on the sheets. This WILL make you angry.

Do remind your child (who hates clothing) frequently that wearing the Buzz costume is his ticket to candy.

Do assemble presents as much as possible before they are wrapped and placed under the Christmas tree.

Do keep diapers and wipes stashed in as many places as possible, examples include the car, purse, child's backpack, cubby at school, Oma's car, Oma and Opa's house.

DO be incredibly thankful to God for his AMAZING ability to bring together people to work in your life. Punkin's new OT is not only one of his former respite workers, she is one of two ALL TIME FAVORITE respite workers! I am STOKED. IF THE CAPS AREN'T CLEAR ENOUGH. Nothing was decided today, we just shared information and she observed him completing various tasks.

Don't leave the butter on the table unless you are ready to hand over the biscuits ASAP.

But,

Do remain calm and stick to your guns when they aren't WEADY YET.

Tuesday, October 28, 2008

like son, like mother?

Going to the eye doctor is always sort of nerve wracking for me because I'm worried I won't give him the right answer and then my prescription will be wrong and then the world will implode. So I sit and wring my hands through determining which slide is clearer than the other, if all of the dots are really lined up, and whether or not I can read the line easily or if I actually had to squint a little. Today, things were put into perspective. He basically told me that my wiring is a little "different." No, mom! My optical wiring. I am more sensitive to visual stimuli and even subtle changes than most people. Oh, duh! Guess that's where Punkin gets it!

It's just weird how all of these quirky things about myself add up to Fragile X -- and how many of them I have in common with Punkin, even if much less intense. It's refreshing to know that I can look inside myself to understand Punkin's challenges tiny little bit more and help him cope with a world that often seems to fight against us with it's goopy pudding, wal-mart lighting, icky icky wallet fabrics and super dry paper towels, strings, tags, flashing lights, cushions on chairs and couches, coats (OH THE COATS, OH THE HORROR), and slides flipping back and forth between really blurry and slightly less blurry. Which is better? The first slide or the alternative? Tell me when the two sides look more or less the same. Tell me when the dots line up. Tell me when they start to look funny. Now tell me when they line up again.

When I came back to school to pick up Punkin after the appointment, his teacher told me that he strutted into the after school program, threw down his bag, waved while greeting his friends with a "Hi guys!", removed his coat, and yelled 'Ta-Da!" She also told me that when they went to the school assembly about fire safety, he was laying on her lap and decided to take a little CHOMP out of her leg. He wasn't mad; it was just in the way when he needed a little oral input.

On a completely different note, the episode of Law and Order SVU I'm currently watching is subject -- unusual though it may be -- to some seriously bad acting.

Monday, October 27, 2008

cat
more animals
http://www.barackobama.com/pdf/Obama08_HealthcareFAQ.pdf

http://www.barackobama.com/issues/healthcare/

i have been a fervent supporter of obama since 2003.

i really didn't want to turn this into a political blog, though, i just find obama's ideas refreshing. it's okay if you disagree. now scroll down to look at cute punkin pictures and read about how much money was raised for fragile x last week!!!

Sunday, October 26, 2008

This is worth seeing and reading. I can't find anything on McCain's site about people with disabilities and nothing so extensive about early intervention. I'd love to see a link if you find something I couldn't. Here's a few excerpts:

Zero to Five Plan: The Obama-Biden comprehensive "Zero to Five" plan will provide critical support to young children and their parents. Unlike other early childhood education plans, the Obama-Biden plan places key emphasis at early care and education for infants, which is essential for children to be ready to enter kindergarten. Obama and Biden will create Early Learning Challenge Grants to promote state "zero to five" efforts and help states move toward voluntary, universal pre-school.

Expand Early Head Start and Head Start: Obama and Biden will quadruple Early Head Start, increase Head Start funding and improve quality for both.

Affordable, High-Quality Child Care: Obama and Biden will also provide affordable and high-quality child care to ease the burden on working families.

Early Intervention for Children with Disabilities: Children's ability to succeed in school relies on the foundation they build in their first three years. Pre-kindergarten for four-year-olds is important, but it is not enough to ensure children arrive at school ready to learn. This is particularly so for children with disabilities and/or special health care needs, who already face challenges in the early years that can set them behind their peers before they ever enter school. Barack Obama and Joe Biden will invest $10 billion per year in early intervention educational and developmental programs for children between zero and five. Their plan will help expand Early Head Start to serve more children with disabilities, and will spur states, through programs like Early Learning Challenge Grants, to expand programs for children with disabilities, such as IDEA Part C, and integrate these programs with other early childhood programs.

Support Universal Screening: Roughly 90 percent of infants in the United States are screened for various potentially disabling or life-threatening conditions, but fewer than half the states screen all infants for the American College of Medical Genetics’ full recommended panel of 29 disorders. Many of these conditions, if caught early, can be treated before they result in permanent impairments or even death. And parents are often unaware that the tests are available. Barack Obama and Joe Biden believe that we should ensure that all states have comprehensive newborn screening programs. In addition, they support setting a national goal to provide re-screening for all two-year-olds – the age at which some conditions, including autism spectrum disorders, begin to appear. Part of Obama's early childhood intervention plan will be directed at coordinating fragmented community programs to help provide parents with information about screening for disabilities as infants and again as two-year olds. Achieving universal screening is essential so that disabilities can be identified early enough to help children and families get the special supports and resources they need.

I think it's exciting that someone is recognizing 0-5 and the need for broader testing of newborns and putting it in their campaign platform!
Punkin filled up his potty sticker chart in record time, so we headed off to the Children's Museum on Saturday to play. Don't get too excited, he's still going in his diaper and all trips to the potty are initiated by me. But in general, things are progressing.

They have a room where you're supposed to bang FIGHDERS around and make lots of noise.
AND they have a YELLOW potty!
This is the face of a boy laughing hysterically over the video Kristie posted yesterday. We've watched it a few times now.

Saturday, October 25, 2008

fragile x week results are IN and we ROCK at the easiest fundraiser EVER

My aunt called maybe six months ago and mentioned that the student council at the elementary school where she works wanted to have a fundraiser and they voted to have it benefit Fragile X and call it Gene Day -- pay $1 to wear jeans instead of their uniforms. I decided to have the same day at the schools where my mom and I work as well. The difference would be that the staff would pay $5 to wear jeans since our kids don't wear uniforms. Anyway, it turned into Fragile X Week with one school participating Tuesday, one Wednesday, and one Thursday.

Anyway,

We left Wednesday afternoon for my Aunt and Uncle's house an hour and a half away. Punkin did great in the car, minus the solid five minutes of screaming near the end. Once we turned off the highway into a residential neighborhood, though, he stopped screaming and started listing people's names; someone we knew lived in one of those houses. The end was in sight. We settled in for some dinner; Punkin surprised me by attacking a salad with ranch dressing. (Like the tartar sauce last month, though, it turned his face bright red wherever it touched him.) He needed some convincing to sleep in a strange bed, but eventually fell asleep so I could eat some apple cake. (Hhheeaaahhhvvaannn.)

The next morning I gave a rather lackluster (and short) speech to the school (K-8). But then I went and said hi to them in their classrooms, and I think that went much better because I was only speaking to one grade level instead of navigating the very little kids with the almost high-schoolers. One kindergartener asked, "Does he have any teeth?" then "Can I see them? Can you tell him to open his mouth?" and "How many teeth does he have?"

We hung out with my aunt's class quite a bit. One of her first graders leaned over to her friend, pointed to me, and whispered, "She's gonna be famous!" After we ate some pizza for lunch and celebrated the $250 (!!) they raised, we headed home. I was so sleepy I had to pull over for about 10 minutes to rest my eyes.

So, how does it all add up? Well, my mom's school raised $128, the school I work at and two other related preschools raised $230, and my aunt's school raised $250. So all together $608 was raised for The National Fragile X Foundation!! All of the donations are being sent in separately, but I plan to send a letter with the ones I'm mailing to explain how this all developed. I definitely encourage you to try this at some point to raise money for whatever is important to you. It is super easy, requiring almost no planning and very basic math skills. =)

Tuesday, October 21, 2008

warning: potty training update

he peed in the potty twice at school, three times at home, and once at best buy. !!!!! we haven't been in this good of a potty training position since july. let's hope it lasts this time! i won't talk about what happened in his diaper at the store, though. let's just say an emergency diaper purchase was made and many windows were opened to air out the car. wish me luck tomorrow -- i have to talk in front of a whole school. i should say i GET to talk in front of a whole school, about my three favorite topics: me, fragile x, and punkin.

Monday, October 20, 2008

GENE DAY!!


thanks, jennie!
(and laura for making exactly what i was envisioning!)

exciting developments and one mounting headache

does anyone else find it humorous that the makers of swiffer sweepers, the product that taught us that we don't need silly spray cleaning products or brooms -- just a simple cloth to pick up dirt and dust -- has now brought us -- wait for it ---DUSTING SPRAY! ?


punkin seems to have turned a corner in the potty-training endeavor. actually, i turned a corner first; the corner of bribery and desperation. it started with him getting candy for sitting on the potty. it did the trick of convincing him that the toilet deserved another chance, but quickly lost any motivational pull. so i bought this this book about going potty that had a chart in it. the chart had four rows of ten with spaces for stickers. i cut two rows off of the chart. the first one i filled with stickers. the second i left blank. i hung them both on the bathroom wall with a picture of us at the children's museum. he LOVES the children's museum. i'm not sure how much he understands, but he must understand it to a point (after i explained repeatedly that we weren't going to the museum that second) because he went potty THREE times today. and it was in the regular potty, not his glorified plastic chamber pot. whoo-hoo! or as punkin says these days, "hoo-hoo!" i think the best reward for him, though, is my reaction. i cannot adequately describe it here. i can ony say it involves hands in the air, shouting "yaaaahhh!!!", and a funny voice.

and now, more about ME! my doctor's office called today. the nurse told me that my scan showed a slightly deviated septum, but otherwise everything looked "pretty good."
so do i need to schedule and appointment?
nope! (happy voice)
okay.
goes to hang up.
but i'm still sick! i've been sick for at least 6 weeks. i need ... something.
okay.
and she promises someone will call me back. that was 6 hours ago...

other exciting developments:

punkin was able to put on his socks (after his teacher got them over his toes) and shoes today all by himself given the incentive of lunch.

he is going through a growth spurt, which is terribly exciting because he sleeps all the time. and since i haven't had as much respite lately, this is a welcome relief.

prison break is just as gory, slow-moving, intricate, and addicting as ever.

social security is making me crazy yet again. it counted a child support payment i got in august towards my august AND september income. and when i called about it, the lady ... well... i have to send back papers that they should already have copies of. GAHAHHAHA.

my new meds seem to be good. the chlorazepate is especially nice to take before bed because it makes me super sleepy. and i haven't had any problems from the lexapro. there's no way i could take the chlorazepate during the day, though. unless i tried taking half. but i'd have to try that on a day i was staying home all day to see what the effects were. i'm used to the honeymoon period of meds, so we will see if my love for them changes. =)

monday is nearly over!

Sunday, October 19, 2008

let's raise some funds!

This week is my own personal Fragile X Week! It's basically a series of GENE Days. Teachers at my mom's school are wearing jeans (get it?) on Tuesday for $5, the school I work at and its affilliates are wearing jeans for $5 on Wednesday, and my Aunt's school (students and teachers) are wearing them Thursday.And I am going to talk to the kids after their chapel service Thursday. Anything you think I should absolutely say? Hopefully we will be able to raise a substantial amount of money and raise awareness. I am sending home flyers with all the kids explaining to their parents why the teachers are wearing jeans and the basics of Fragile X. My friend Laura made a super-cool logo and I tried really hard to get it on my blog, but I just couldn't. So if you want to see it or you want to use it for your own event, e-mail me at fxfundraiser@gmail.com. Otherwise, here's the info, adapted from a the Top Ten list I found at Fragile What?.


FRAGILE X SYNDROME

1. It’s genetic. Many families have never heard of Fragile X and may not have a family history of learning problems.


2. About 1 in 260 women and 1 in 800 men are carriers.*

3. About 1 in 3600 boys and 1 in 4000 girls have Fragile X Syndrome.*

4. Fragile X Syndrome can affect anyone.

5. Fragile X Syndrome is a spectrum disorder, meaning symptoms may vary from mild learning and emotional problems to severe cognitive impairment (mental retardation) and autism.

6. Carriers of Fragile X can have problems with reproduction as early as their 20’s and problems with balance, coordination, and memory in their later years.

7. There are certain traits related to Fragile X Syndrome, but no child has all of them. Some of them include learning problems, a long face and big ears, Attention Deficit Hyperactivity Disorder (ADHD), anxiety, shyness, and speech delay.

8. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and Polymerase Chain Reaction (PCR) tests are recommended.

9. Kids with Fragile X are lovable and friendly.

10. Where to go for the most accurate and up-to-date information on Fragile X Syndrome:
http://www.fragilex.org/ (The National Fragile X Foundation)
http://www.fraxa.org/ Fragile X Research Foundation

*http://www.fragilex.org/html/prevalence.htm

Thursday, October 16, 2008

there's french silk pie in the fridge

someone please save me from my sinus misery. you would be doing my coworkers and son a favor as well as my sand volleyball team. because they rely on me to be alert and responsive. right now the pressure on my brain is leaving me semi-conscious at best.

also, it is thursday. which means tomorrow is friday. and that is always a good thing. the hopefulness of the coming weekend and all it's relaxing joys spill out before me every thursday afternoon. *sigh*

seriously, my left eye must bulging out of my head by now.

i did laundry yesterday. this wouldn't usually be exciting, except that i did laundry IN MY BUILDING. as in down the stairs. one flight. it didn't interrupt my entire day. it didn't drive punkin to near collapse. there was no vending machine to taunt me with its alternating chocolately and cheesy fantasies. *another sigh*

i've decided that the automated postal center is a fabulous step in the right direction. but what i really want is a drive through. no unleashing punkin from his five-point harness. no carrying super-heavy boxes in one hand, desperately grasping a squirmy boy in the other, and staring at the door begging it telepathically to open. nope. just drive up and drive away.

i am so brilliant, i know. amazing how i can come up with these things even as my brain turns to soup.

i talked to punkin's new OT today. she sounded like the nicest lady ever. she may not be able to take us on herself, actually, because she is going on maternity leave in decemeber and wants punkin to have some continuity. but i feel completely confident in this center. everyone i've spoken to is just plain happy and nice. and they possess a quality difficult to find in many professionals -- the ability to listen.

so my friend and i went for a nature hike today at the END OF MY STREET. there's a little pavilion and everything. so cute. very unkempt, but i like it.

i realized i never told you about my experience at volleyball a few weeks ago. i was walking in wearing shorts, which i NEVER do -- and these two guys are standing outside the bar smoking (there's a new no smoking indoors law). one of them looks at me and says, "damn, girl" (oh please do not hit on me) "you don't spend 'nough time in the tanning bed. you's pale. damn." (nice.)

Tuesday, October 14, 2008

so i have nothing very exciting to say. punkin is on antibiotics for an unidentified problem having to do with bacteria somewhere, maybe his sinuses or his throat. and i am going to have to wait a while for the results of my ct-scan. he got sick saturday night immediately after i came back from a wedding. it was weird. all of the sudden i'm at the wedding and i know i need to be with him. so when i check on him and he is snoozing, i think it must be the wine. then he wakes up maybe a minute later and he is burning up (103+) and vomits (very hot, by the way) on my shoulder. this continues for the next day and a half, and forces me to face the reality that i feel really lousy myself (did i mention my sinuses are going to explode?). i did love the part where he cuddled with me on a pile of blankets in front of the tv all day sunday, though. that was good stuff.

Saturday, October 11, 2008

Okay. Kristie made me raise a question. How many of you or your FX children stopped breathing or were not breathing at birth? My heart rate was very low, they should have done a c-section but didn't, and I came out blue. I spent some time in the ICU. A strange sight, no doubt, to see a 9 pound 4 ounce baby amongst the premies. Punkin needed only a couple bursts of oxygen. He was born very quickly, though, whereas my mom' labor with me was much longer and more horrendous.

Wednesday, October 8, 2008

remember how i said i want punkin to stand in front of church and sing with the other kids? well, it wasn't the front of church, but it was close. we went to an event at church tonight. it's 3 hours, the first hour is for eating (super cheap), the second hour is for kids and parents to separate and do some learnin', and the final hour is to come back together for a little crafty time. before the kids left for their classes, they all gathered at the front of the fellowship hall to sing a song. punkin charged right up there and danced his little legs away. his dancing resembles jumping in circles, by the way. on the way back to our seats, a little girl encouraged me, "well, he's got the jumping part down. he really has the jumping part down."

Monday, October 6, 2008

seven things meme

I've been tagged by Holly's mom over at Holly Daze. Her little baby is the first one to receive minocycline (a common antibiotic) as a potential treatment for Fragile X. You can read more about it here or here. Super exciting stuff.

For this tag, I am supposed to say 7 interesting/unknown things about me. I'm being a little more than lenient with my responses. And I have 9. Oops.

1. My favorite episode of Spongebob Squarepants is on right now. We usually don't watch it, but I was in the mood. Anyway, this jerk comes into the Krusty Krab and accuses Spongebob of forgetting to put a pickle on his Crabby Patty. This unsettling news rattles Spongebob to an even deeper level of stupidity; it renders him completely unable to assemble a Crabby Patty correctly. He stands at the counter repeating the steps in the wrong order, "Ketchup, bun, tomato, burger, bun, mustard, lettuce...." It continues at home, where he can't remember how to tuck himself in at night, "Sheet, Spongebob, mattress, blanket." Eventually he regains his confidence and Bikini Bottom returns to normal.

2. Punkin's notebook read, "The pictures in his bag should adequately describe your son's activities during rest time." The photos are him, on his upside-down cot, sporting only a pull-up. It's a good thing his teacher has a sense of humor. =)

3. I have to get a cat scan of my sinuses on Thursday. This is something that probably should have been done years ago, but I am afraid of three simple words, "You need surgery."

4. Sometimes the idea of having a cure for Fragile X scares me. I know, crazy, right? It's not so much a concern for babies and toddlers, but for older patients. I blame it on Flowers for Algernon. I mean, imagine a teenager or even an elementary student who has always known life a certain way and then just slowly flipping a switch. It's not as if that individual would lose their memory. I just can't imagine shifting my perspective -- and other people's perspective of me --along with my general understanding and abilities changing so dramatically. Plus, I love Punkin and all of his crazy quirks. I can't imagine him any other way. At the same time, however, I have to understand that he is 3 right now. When he's 13 or 23 I may feel much differently as I watch how his life and circumstances differ so greatly from his peers. Right now his quirks are funny. His aggression can be contained or even ignored to a certain degree. And sometimes when the (private Lutheran) school kids sing in church on Sunday I want to just cry and cry and cry because I want so badly for him to be up there some day. And maybe he will be as a Sunday school student. I am so appreciative of my Lutheran education; I wish I could share that entire experience with him. So right now my priority is awareness so that more people are correctly diagnosed and more babies are tested at birth so that they can receive early intervention services (and maybe that cure).

5. I remember my first anxiety attack at around age 7. I share this only to make people aware that depression and anxiety occur at all ages and for all variety of reasons. I had a ridiculously beautiful childhood; my issues are chemical, not environmental. This, of course, makes me even more anxious as I watch my son, who is completely unable to express himself, and wonder what he thinks and feels as he struggles with Fragile X.

6. I believe in full inclusion in theory but often not in practice -- because it's done half-heartedly. It only works if every single professional in the school is on board and all of the appropriate supports for both staff and students are cemented in place. Inclusion doesn't just mean allowing Sally to go to some or all of her classes with all of her typical peers; it means adapting the entire curriculum, adapting the physical classroom, and giving her OT, PT, and speech resources that are built into every part of her day. And all of this should not be left to one teacher's shoulders. It should be a team of teachers working together, maybe even with (gasp) classroom aides, to support all of the students. Do you see this happening at your child's school? Cause I don't see it happening at mine. My sister taught in this type of environment, so it is possible. I know it's possible.

7. I was an extra in the movie The Babe. If you ever get an opportunity to do something like this, go for it. It was a fun educational experience. And hot. It was 90 degrees in a baseball stadium in the middle of Nowhere, Illinois.

8. I have a BA in English and History with a minor in Women's Studies. I guess that's why I'm working in a preschool, right? =)

9. I am not only voting for Obama, but I also donated to his campaign. My parents are weeping; my grandma is huddled in the corner clinging to a picture of Bill O'Reilly. I love that a family can have such big political differences and still love and respect each other. Even if they think I'm nuts. Last week one of my dad's co-workers gave me a little metaphor. He said that it's like this: You work hard in school, you get A's. You socialize, but you are responsible. Your roommate stays out late partying, skips class, and is flunking out. In an effort to save him, the college takes a little bit from you and all of the other A students and gives it to the failers, bringing them up to a C minus. This is what voting Democrat does, and it is terribly unfair to the A-listers. Okay, this would be unfair. The thing is, I also read something on Dooce (beware of her language) that caught my attention. She posed this question: Indulge me for a second and consider this scenario: let's say you're given the opportunity to donate some money to a desperate family who would use it to feed their children, but were only able to do so if you donated the same amount of money to someone you knew would use it to buy crack. Would you do it? I would. And I guess that makes me a Democrat. Because I understand that not everyone is like me -- not everyone who applies for and receives government help needs and deserves it because while they are educated and working it just isn't enough. But some people are like me; and those who abuse the system bring me down, too. I don't want to advocate for them, either. And in the case of college grades, let's be honest--the good acts of the studiers won't trickle down to help the D-listers. I guess the optimistic Democrat in me thinks we should figure out how to keep people off the D-list and give them stepping stones to get off of it when they end up there.