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.


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.
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."