Friday, July 25, 2008

days three, four, maybe twelve....

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

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

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

6 comments:

w-huff said...

I am so excited for you! I hope all the new info. and new friends are a breath of fresh air for you. Have a safe trip back home.

Jennie said...

No one feeds you beer like your mommy. :)

Sarah said...

wow, it sounds like it's been really good! and i'm glad punkin has been behaving well for you. :) miss you!

Kristiem10 said...

It was awesome, wasn't it? I am off to post about my experience at the conference. I think I'll have to break it down, too. Love ya!

Laura said...

I am so excited for you, and I can't wait to hear every minute detail when I see you in less than two weeks!!

Landon Andrew said...

Hey girl! Loved your post! Check out our blog for Landon. Talk soon! :-)