Tuesday, March 31, 2009

play-by-play of an unhappy day

3:00am: I hear gibberish and such from Punkin's room.

3:30am: "Mom! Mom! MOM!"

3:34am: Punkin is in bed with me.

4:00am: Punkin is watching a Mickey Mouse Clubhouse DVD and I'm half sleeping next to him, still in bed.

4:59am: "MOM. MOM. Uh oh."

5:00am: I restart the movie.

5:40am: Alarm goes off.

6:07am: I get up.

6:40am: I remember, as I'm walking out the door, that Punkin needs his antibiotic. I hand it to him; he throws it across the kitchen, showering the cabinets and my pants in "the pink stuff."

6:41am: "MESS! MESS! A MESS!" Punkin attempts to clean the floor.

6:50am: We are finally leaving. I am already late.

6:55am: We arrive at school and he dumps his bag of Goldfish crackers on the floor of the car. "MESS! MESS!"

6:57am: He throws Ducky across the classroom.

6:57: "WHAAA!!!! I FROW! I FROW! A MESS!"

7:00am: He is laying upside-down on my lap, trying to regroup.

7:20am: The other teacher goes to get the breakfast cart from the cafeteria. I stand up to get Punkin's therapy brush out of my purse. He walks up to the table, picks up my Mountain Dew, and empties it on the floor.

7:21am: "WHAAA!!! A MESS! TIME OUT! A MESS! WHAAA!!! "

7:25am: He is back on my lap, being brushed, and we are again regrouping.

7:30am: My legs are burning.

7:40am: He asks to go to the car.

7:55am: We leave the morning program and walk down the hall to his classroom. I open the door to his classroom; he refuses to enter. He has NEVER refused to go in his room. I nudge him inside and he whines. I'm not sure how things went from there, but I know he didn't sit at the table right away like usual. I'm guessing they had to do some sensory/calming stuff for a while.

10:10am: I find out he's crying about going poop and pushed another child into a locker. He feels warm but has no fever and was crabby with the nurse, whom he loves.

10:15am: We go home. Maybe I'm overreacting, maybe not. But the kid did not feel good. I'm guessing the pineapple yesterday just isn't settling well (although I have yet to see any explosions, if you know what I mean).

10:25am: We arrive home. He is THRILLED. He poops.

10:30am: The guy comes to inspect the apartment. He asks about my neighbors. "Well, I don't know much except that they're loud and have lots of people coming and going. And they wake me up frequently between the hours of 3 and 5am." He says they have no power. I tell him about the note I saw from the electric company. "Ya, they're probably on their way out, then. You should call when you have problems, then we can document it." He checks out my place and promises to fix my two kitchen cabinets, the floor, the screen, AND give me a real screen door on my balcony with a better lock. He is exceptionally nice.

12:00pm: Punkin falls asleep for about 10 minutes on my lap. I try to put him in bed, but he rips the sheets off, runs out of the room, and bangs his head on the floor.

12:15pm: He's done with that business and lays in bed quietly for five minutes. I let him get up. We are watching Duck Tales. Again. And it's the 3rd dvd out of the set. Again. He loves the cave duck's voice, I think.

1:00pm: The nap, short as it was, seems to be doing the trick. At least he's happy. I'm pushing for an early bedtime and a happier Wednesday.

Monday, March 30, 2009

i'm meeting with a wellness coach next week (free!)

I should definitely not go to the grocery store after working out.

I am the good daughter. I fed Oma spaghetti tonight. That I made myself.

My Punkin is a little chatterbox. Isn't that crazy? Seriously, the child does not stop talking. Today in the car, he said the following: See? Uh see 'em? Ya. Bapple. Yaaa. Oooh. Uh see 'em? Tookie. Yaaa. Mmmm. Uh da da wanna da eat 'em? OKaaaAyy. Yummy.

I love me some Jon Stewart.

I made a list for my new apartment manager, who left a note saying he was going to conduct inspections tomorrow (Tuesday). My favorite part was when I wrote, "Balcony door secure enough? Keep in mind that I share my balcony with my neighbor and his questionable guests." The guests, who, by the way, woke me up at 5:30am AGAIN by ringing my doorbell.

I am excited about going to see Mary Poppins with my mom, sister, and Punkin this Saturday in Chicago. But I am sad because my cousin is the one who is supposed to be going and instead he is stuck in ICU. I heard that he was laughing at his Lucy shows today, though, so that's good. But he still has an infection and is unable to eat. He and his family need prayers.

A number of people, including myself, failed to inform the after-school program that Punkin isn't supposed to eat pineapple or drink orange juice. (It gives him major poopies and a rash in his nether regions that proves his pain tolerance is out of this world.) Sooo, we went to the grocery store after I worked out (hence the first line of the post) and bought some butt cream (Calmoseptine) and some tortilla chips. He's so stinkin' funny about chips. He hugged them all the way to the register.

March 31st is "End the R-Word Day." Please reread this.




Also, why do I have to copy and paste codes into Word instead of being able to just copy and paste them directly into blogger. Every time I try, only about 1/8 of the code shows up. Can you say irritating? Also, I tried to put this video in my sidebar, but it wouldn't reduce to fit the size. ANNOYING. Help, anyone?

Saturday, March 28, 2009

i love the eighties (okay, i was like five when this came out)



Anyone else remember Totally Minnie? My friend and I found this tonight and I literally squealed with delight. My only issue is that I really thought that there was a part where Elton John and Minnie Mouse danced down a sidewalk and the squares lit up. Apparently I am imagining things....

Tuesday, March 24, 2009

personal space

Hi friends. Sorry for the lack of blogging. I've basically been chained to Punkin for the past three days. He will NOT STOP TOUCHING ME. WHAAA!!! But, the fever is gone and we will be returning to our regularly scheduled lives tomorrow. By the way, he snores really loudly when he's sick. Like a man. Or me, after a few beers.

My cousin is coping, but still very sick. Tubes and IVs and ICU sick. And I'm sure he hates it. I'm imagining Punkin, who can't even stand a bandaid on his arm, times 100.

I did get respite today, though, and I worked out at the Y. Hopefully I can keep this up; it makes me feel a lot better about myself. Night!

Sunday, March 22, 2009

conversation of sorts


video


Not sure who he's talking to here. He's been doing this at meals the past couple days, and even did it in the car today. My sister says it's not as weird or scary as it seems. I'll let her explain that in the comments. And Oma didn't say it, but she's probably thinking, "Um? You did the same thing when you were a kid. Why would you expect anything different?" And she's right, I did!

(Be sure to at least watch the very end if you don't want to watch the whole thing.)

update

Okay, my cousin will be in ICU until they can get his pancreas to calm down. Then he will have his gall bladder removed. I just want to give him and his family a big hug.

Punkin has a sinus infection and a high fever, so we will be home for a couple of days. The doctor thinks he never really got better from the last time he had a fever. I'm working on disinfecting the apartment.

In happy news, I had a second date. I highly recommend I Love You, Man as long as you can tolerate a decent amount of crude humor. It's so fun having a social life! Thanks for babysitting, Oma and Opa!

Saturday, March 21, 2009

prayer request

Hi guys. My cousin (FXS) is in the hospital with pancreatitis. Please lift him, his doctors, and his family up in your prayers. Besides being very sick, I'm sure he is scared.

Thursday, March 19, 2009

Wednesday, March 18, 2009

Soooo...I went to the doctor for a work physical and mentioned that I've been having sinus/chest/throat/ear issues for about 3 weeks now. Turns out I have bronchitis. Oops. I guess that weird tickly feeling that pummells my body into uncontrollable coughing at night is called wheezing. I wish I would have made them clean out my ear, though. She said it was completely blocked, which explains the crazy dizziness and increased reliance on closed captioning. Makes me kinda worried about Punkin. But, we are going to the ENT tomorrow, so they can check him out there.

Everyone at church would probably agree that he looked perfectly healthy as he darted UP THE CENTER AISLE. TWICE. I don't want to know what I looked like chasing him!

Our bag is all packed with snacks and pull-ups for our trip to the university tomorrow. I love packing the bag the night before, it makes me feel less anxious.

Ugh. I accidentally bought the generic Captain Crunch with Crunch Berries! The berries taint the flavor of the entire bag. Stupid little balls of artificial fruit flavoring. GARR.

Okay, it's too late for this. Night!

Tuesday, March 17, 2009

happy st. patrick's day, from a german/welsh lady

funny pictures of cats with captions
see more Lolcats and funny pictures

I've been wanting to join the YMCA for a while, but the cost is a little higher now than it was 10 years ago when I was first a member. I thought about rejoining a cheaper gym across town, but it would be 40 minutes of driving time and I hate their child care. The Y is really close, so I figured I could leave Punkin at school for the after-school program or bring him with me and be home in 5 minutes. So, I found out a week or so ago that they offer financial aid to low-income families and applied. I signed up today for my membership for a whopping $23.50 and worked out for about 40 minutes. It even comes with 5 free hours with a personal trainer --I will be needing that to keep me going! The downside? Their child care doesn't seem that great, either. The woman giving me a tour (who had read my application that included Punkin's diagnosis) assured me that "he'd be fine!" in a (small, narrow) room with kids ranging from 6 weeks to 8 years. Riiigghhht. I don't know who I'd be more worried about in that situation, Punkin or the babies he'd be likely to tackle....

Monday, March 16, 2009

hi dude!

Punkin's teacher and speech pathologist made his very first video for video modeling today. They are two very dedicated ladies! The work took the entire day; I could see how excited and proud they were, though. It was awesome. And Punkin loved watching himself on our television (they sent home a copy of the dvd for us). We watched it about 7 times! The video is of him going to an integrated classrom (typical and special needs kids -- 18 of them!) for carpet time. It's just too darn cute. He walks in and goes, "Hi, dude!"

Also, I thought Umma made a really good point in the comments yesterday:

I am a convert to the sensory diet as well. We had one written into Monkey's IEP right from the beginning but after the first year we realized even experienced special education teachers don't always understand what a sensory diet is!

Your advice to get the whole team to sit down is right on.The first year the teacher's version of a sensory diet was to give Monkey a chewy tube when he chewed on his clothes or his blankie when he was upset. It was all reactive rather than proactive. You need to identify the rough spots and intercede before they happen.

Monkey has had a REAL sensory diet since last October and his language has exploded since, his ability to participate in seated activities has done the same. We credit the mix of folic acid and the sensory diet. Monkey's diet has much the same techniques one other thing that he has responded really well to is using lotion during deep pressure. It's in addition to the brushing protocol. Monkey LOVES his lotion...he prefers a foot massage above all else, lol. Can't blame him there.

Saturday, March 14, 2009

sensory diets 101

First of all, I am NOT an occupational therapist. You should consult one, and probably a speech- language pathologist, before you start a sensory diet. This information is drawn from my experience, and your child's needs may differ from Punkin's. Much of this was learned along the way; doing it a second time would be much easier. Also, Punkin's teacher is a rock star and did a lot of work to get this going. (THANKS!!!)

A sensory diet has little to do with food. Basically, it is a schedule of sensory breaks given throughout the day to regulate a person's state of arousal. This is something that most of us can do naturally -- we drink coffee, tap our fingers on the table, take a walk around the office, ect -- but people with FXS can't. And their needs are generally intensified compared to ours. I think of it as an inability to filter out unimportant stimuli from important stimuli, making the world feel like one giant attack on the five senses.

Some of these breaks may be activating while some are calming, depending on your child's needs. Punkin's are all focused on calming EXCEPT when food enters in. More on that later.

First, PRAY. Because, well, the hardest part is getting everyone to cooperate and agree -- not to mention actually DO it. I am of the belief that only an act of God can make this possible.

1. Learn as much as possible about hyperarousal and sensory diets as you can. The National Fragile X Foundation has their Foundation Quarterlies available online, and the articles by Mouse and Tracy are always approachable and realistic. Also, the series Braden on Behavior is quite good. The more you know, the easier it will be to convince your child's teacher that this is worth investing time and energy in.

2. Ask your child's teacher what times of day are the worst. If she doesn't know, ask her to make notes for a week or two and get back to you. Do this at home, too. Make notes of how your child reacts to specific situations -- try to be specific about which behaviors you want to eliminate. (ie: hitting, hiding under the table, stuffing food, screaming) The reason for this is to determine what time sensory breaks need to be given. A sensory break or sensory diet is meant to be proactive, not reactive. So if your child has trouble at 9:30 every day, you would schedule a sensory break at 8:30 or 9:00 in order to prevent a meltdown later. Also, your child will probably be more cooperative if you aren't catching him in the middle of a meltdown.

3. Request an evaluation by an occupational therapist. She can do a sensory profile on your child to determine his strengths and weaknesses. This is a really important step because it can help everyone understand what environmental and physical challenges trigger undesirable behavior. It will also help when coming up with ideas for what kind of input your child needs.

4. Talk to any other service providers, especially speech-language pathologists, as they often need to work closely with an occupational therapist -- or at the very least are often sharing the same concerns about oral-motor development and may have ideas about oral-motor interventions.

5. Schedule a meeting for all of the people involved just to talk. Hash out all the information you've been given and come to a consensus on what behavior(s) you want changed or eliminated. Also, brainstorm ideas on how to intervene (ie: deep pressure brushing, sensory balls, weighted vests, computer or TV time, swings, snacks, trampolines, chew tubes). In Iowa, if these items are written into the IFSP (Individualized Family Service Plan -- for children birth to three) or IEP (Individualized Education Plan -- for children three to twenty-one) then the state MUST provide them and use them. You, as a parent, aren't required to purchase anything. Of course, this means that the equipment stays at school, so you may need to purchase some items to keep at home for your own use. Rememer that the sensory breaks need to be as fast, easy, and cheap as possible. This increases the likelihood that the teacher and service providers will follow through. Because, let's face it, none of us wants this to be difficult or time-consuming.

6. The diet should be presented later by the OT at a second meeting. If needed, you may ammend the child's IEP to include the sensory diet.

7. Do your part and follow through at home. Also, consider buying your child's teacher some chocolate.

Punkin's Diet (general version):

He is given a break about every 90 minutes. The majority of this is Deep Pressure
Brushing (
DO NOT DO THIS WITHOUT TALKING TO AN OT-- it can be done
incorrectly!) followed by heavy work. The brushing activates his joints and
nerve endings, and then the joint compressions calm them. This is followed by
heavy work (lifting, pushing, tug-of-war, chewing on a chewy tube) to further
calm and give the joints lots of input.

At other times, she (and I) may "squish" him under a pillow or bean bag to give him lots of deep pressure input at once. He LOVES this.

His teacher also has him lay on his back on an therapy/excercise ball to
give him some upside-down time. They also have sour candy, popcorn, and chewy
tubes to give him intense oral input that wakes up (sour) or works/tires
(crunchy/chewy) his mouth and jaw. The idea is to give him enough input through
appropriate means that he stops chewing on inappropriate or unsafe things such
as toys or his hands.

His speech pathologist is using this thing to help with
oral-motor defensiveness. She got the mouse and cat attachments, and Punkin
really likes to give them kisses.

I continue this at home with brushing in the afternoon, followed by a
snack, and then bouncing upside-down and brushing right before bed.


This plan is WORKING! Combined with his meds, he is a calmer, less-anxious version of himself. I love it. It takes time to see real results, but it works! He is responding very strongly to the brushing, especially. The difference is visible before and after it's done. And it only takes about 5 minutes for the brushing and compressions.

The FX Foundation also has a place on their website where you can e-mail them. I've done this a couple of times, and a real live professional e-mails you back with a detailed, personal response.

Good luck!

Friday, March 13, 2009

it is SO friday

If you are questioning whether or not a sensory diet is worth the effort, let me tell you --YES!!! If you want more details, ask.

And if you are questioning whether or not you can catch the death cold/cough/sinus pressure from h -e - double-hockey-sticks twice in one winter, let me tell you -- YES!!!

Also, I finally bought real tupperware-type containers. I am becoming more of a grown-up every single day. *tear*

AND, it is time for bed.

Wednesday, March 11, 2009

UH OH!

Mark it on your calendars, people! We spent less than 40 minutes at the ENT today! He said that he has a hole in his eardrum from where the tube fell out and that the hole may or may not heal itself. There were no further instructions other than to come back in 2-3 months.

We are going to the University next week for another opinion. Hopefully their report doesn't include the words "permanent hearing loss."

Last night at bedtime, I realized that Ducky had been left behind at school. I used to have three Duckies, but we have managed to lose two of them. Anyway, I was afraid that Punkin would react rather violently. Instead, the conversation went like this:

"Mom?"

"Yes?"

"Duddy?"

"Ducky's at school. No Ducky tonight."

"Otay."

.......

"Mom?"

"Yes, Punkin?"

"Duddy? I wannit?"

"No Ducky. Ducky's at school."

"Stool. OH NO!"

.......

"Mom? Duddy?"

'No Ducky, Punkin. I love you."

"Yi yove you."

Tuesday, March 10, 2009

I forgot to mention in my last post that my cousin has a very active social life -- definitely a fuller calendar than mine! And he loves his wooden spoon collection almost as much as his dvd collection. He and Punkin are close to getting into arguments when they're together -- good thing they both have their own dvd players!

Also, my respite worker is so NICE. She fixed my slipcovers (I had it on backwards) and set the clock on my microwave. She is really good with Punkin, too.

Punkin had a good day today. He was so docile and cuddly during speech that they took him to get his temperature taken! =) I think the time change and having a babysitter four nights in a row has just been a bit overwhelming for him. I know, I am so spoiled -- four nights!

I got my hair done today. Man, I think I'd pay money just to have that girl wash my hair for me, forget cutting it! I almost fell asleep.

That's all, folks! It's laundry night.

Thursday, March 5, 2009

stuff and stuff

I am happy to report that the tomato issue seems to be settled 50/50. I would have been happier to win, but at least I know I'm not COMPLETELY crazy for enjoying the occasional tomato on my caesar salad, thankyouverymuch.


Now, on to something I've been mulling over for a few days now. I read this the other day, and it inspired me to talk about the people in my family with Fragile X. There's me, Punkin, my cousin (20s), and my great uncle (80s). (My mom, my two aunts, and my grandpa are all carriers. My grandpa and great uncle are brothers; one has the full mutation and one has the premutation.)

There seems to be a general love for all things musical -- dancing/singing/twirling musical, I mean, not necessarily typical pitchy children's music. We're talking Julie Andrews, here. The only time Punkin likes loud for loudness' sake is when he's making it himself.

My great uncle hates swings. I'm not sure how my cousin feels about them, but Punkin loves them and so do I!

My great uncle and my cousin have seizures. Since Punkin had one as an infant (staring spell), I'm always nervous that more are just around the corner.

We all have acid reflux. I will always find the money to refill my prescription for Aciphex. It's liquid gold in my world.

We all love hamburgers, though some more than others. =)

Punkin, from what I can gather, is much more active (ie: ADHDish) than my uncle or cousin.

They are all, in the world of FXS, quite verbal.

My great uncle cracks me up. It's difficult to explain through writing. Imagine you have some cotton balls in your mouth. Now say the same phrase 12 times. Try, say, "Father of the Bride. That's a good movie. That Steve Martin, he's so funny. I got that one. Father of the Bride. I got that whole thing! Have you seen that one? Father of the Bride. That's a good movie. That Steve Martin, he's so funny. I got that one. I got that whole thing." Now say it while waving your hands from side to side and shaking your head for TWENTY MINUTES.* That's my Uncle. He lives in a nursing home, where he is the mayor. He has a large movie collection and at least used to play music for the other residents. And he is paranoid about the other residents stealing his M&Ms, so he hides them. If you want to see a smile on his face, hand him a card with money inside or ask him to take your picture with his Polaroid camera!

I used to think I had nothing in common with my cousin; now as an adult I find we have a great deal in common. In fact, we have at least one gene that matches! I think it still baffles me that the same mutation on our chromosomes can cause such differing results.

My cousin lives at home, and I imagine Punkin will for as long as he can stand me. Some day I know he will have to be part of some kind of care facility, but I just can't bear to think of that day right now. It weighs heavy on my heart. I do hope there are more opportunities for people to meet adults with FX; in my experience, they are a whole new version of joy.


Also, in completely different news: I went on a date Saturday. I honestly can't tell you the last time I went on a date -- probably over five years ago. It was way fun. But that's all I'm gonna say about that. =)

*Can you tell this happened to me? I was home alone with my uncle and, sadly, no Father of the Bride. I almost went out and bought it.

Wednesday, March 4, 2009

the tale of one boy's ears

I talked to Punkin's pediatrician today and we decided that a trip to the University is needed to address Punkin's hearing/ear issues. I'm still keeping his appointment with the local ENT just because I want to see what all of our options are, and I'm curious about what he has to say. Sorry, but that's all for tonight. I'm going to bed early!

Tuesday, March 3, 2009

sigh

funny pictures of cats with captions
more animals


i love that my respite worker vacuumed my living room!

it stung when the lady waxing my eyebrows made reference to my unibrow. (get it? it STUNG)

i sighed really loudly when i plucked what i thought was dirt out of punkin's ear and discovered it was his tube. for now, we are keeping the appointment with the ENT on the 11th and continuing the drops. i also called his pediatrician and left a message. Apparently he called me back, but i never heard it ring. *sigh*

ewww .... some serious crusties came out of punkin's ear just now. GAH--ross.

(slight time delay...do be do be do)

thanks opa, aunt l and uncle j, my new furniture looks great. it's a little red in comparison to the neutral tones going on everywhere else, but the scale of it is nice. and it's clean. and sooooo comfy. i almost killed opa trying to get the old sofa bed out, but we both survived, fingers and toes intact. now the big question is: what color slipcovers do i buy? i really think washable slipcovers are necessary for my own sanity. i think i see a new poll in this blog's future...

speaking of polls, do you realize you are siding with OMA? i am coming to your houses with some caesar italian dressing, asiago cheese, dark leafy greens, and TOMATOES.

Monday, March 2, 2009

overheard in the waiting room, or, WOW

nothing beats being snuggled under a blanket fresh from the dryer. and because of that, i will be unable to post adequately about how punkin had a horrible, no-good. very bad day -- which included another trip to the ENT and a new bottle of ear drops for me to torture him with.

i did meet some ... err... interesting people in the waiting room; one delivered her baby at 36 centimeters instead of the full 40 (ya, she meant weeks, but she didn't KNOW THAT) and another who apparently doesn't want to support slave labor in china and therefore scours second-hand stores for tableclothes with which to make kitchen towels. she also gave birth to seven babies, had a daycare for 35 years, and her last pregnancy culminated with a c-section and apparently the discover some "hidden" babies that had passed away at various stages in utero.

and no, they weren't telling ME this information, at least not directly; they were telling each other. loudly. from across the room. the guy next to me was bugging out trying to read his book, especially once i -- of course -- got dragged into the conversation as well when she asked me if i know where to buy organic meat. she then proceeded to tell me where to buy local organic meat, so i think it MIGHT have been a ploy for attention after 36 centimeters left.

Sunday, March 1, 2009

loving my bed

I bought something completely unecessarily necessary. Huh? I bought a new tv/dvd combo for my bedroom. Seeing as how there are only two of us in this apartment, and one of us is four, having two televisions isn't really necessary. BUT, I really wanted one. Actually, i wanted a dvd player so that Punkin and I could lounge in bed and watch Shark Tale instead of having to venture out all the way into the living room for it. But since my tiny tv was so old, it didn't have any of the proper hookups. And since tvs are so stinkin' cheap, it really didn't cost that much more than a dvd player and the proper box and wires to hook it up would have. So there, I've rationalized it to all of you! =) We already bonded over Madagascar 2 this evening. I may have created a monster (or two).

Also, speaking of my living room. I AM GETTING NEW FURNITURE THIS WEEK! My current stuff (thank you, G.G.) was perfect for my other place because of its size, and after 3 years with Punkin it's been loved hard. But since my Aunt L scored a great deal on some new furniture for her living room, I'm getting the hand-me-downs. And since my living room is a decent size -- and not crowded with toys -- the couch and love seat will FIT. Opa is going to pick it up on Tuesday, and I am super jealous because he gets to visit them. L and I decided, though, that a special trip for a wine night at her house could certainly be arranged.

Punkin is SUPER clingy and emotional. W.O.W. I think the combination of being sick and therefore off school, being deprived of his acid reflux meds (because Medicaid loves red tape), and having a rockin' runny nose has taken a toll on him.

And guess what? We get to go back to the ENT tomorrow! Super fun! I may have to think of some snarky way to ask whether or not we'll be waiting two hours again. Hmmm....