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.