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Productive House Arrest & Week 5 at Camp AFT…GAME (back) ON BABY!!!

Written By: teamcharliebear - Jul• 07•13

Week 5 was a success! After only attending three days on week 2, Zero on week 3, and 1 day on week 4…We finally made it back for a full week of camp. YAY!!! …with the exception of Independence Day , of course. No one was more pleased than the Bear to be back in action and in his routine. He LOVES having the structure, and try though I might, there’s simply no competing with the atmosphere and challenges being with like minded peers posses and how that pushes him to excel. That doesn’t mean that some progress wasn’t made while we were on house arrest, however. Let’s see if I can recap some of the highlights… When it became evident his tummy issue was a balance issue and not viral we had to figure out a way to get him to take a probiotic. Now, Charlie isn’t one to drink a multitude of things. He only drinks what I like to call “liquid gold” or strawberry pediasure to be exact. It’s about $2 a bottle depending on where ya buy it. NOT CHEAP! Especially when ya take into account that he goes thru bout a six pack/day. It’s necessary to supplement his nutrition this way because he is a “crunchy” texture guy. The healthiest thing he’s ever eaten is a granola bar but he goes in and out of those phases and right now those are OUT! Think about it. If you had only five items you’d eat any given day…you’d get burnt out on them too! Right? Chicken nuggets, bacon, plain cheese pizza, granola and cookies are also difficult to spike with a liquid or powder medicine when needed. Leaving only the liquid gold and his ONLY stable form of nutrition which is a NO NO!!! Even the slightest change to it and he will stop drinking it and force himself into dehydration. Given the current tummy issue we had been weathering for TWO weeks already we were lucky he wasn’t dehydrated to begin with. It was our one saving grace. So WHAT DO WE DO? Well, luckily we’ve been in food therapy for about a year now, and we’ve been working on…of all things..yogurt! I’ve actually never had a lot of luck with it. He’s only ever taken a bite or two. He’s awkward with the spoon, puts it under his tongue. I think when it hits his tastes buds its overloading sensory wise..there’s a wang to it kinda. He won’t close his lips around it..just licks at it (with the bottom of his tongue). HOWEVER, this time it’s as if he knew how desperate I was or maybe we just got lucky, but he just kept lapping at it till it was gone! It took a while, sure, but HE DID IT! I was proud of him. We’ve turned the yogurt corner and he can add that to his list of foods…mommy approved! :)

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During my boredom I also ended up making use of the foam sticker letters I’d bought about a year ago, as well as the foam board I’d been saving for the occasion. I backed them with poster board and Velcro after neatly trimming them down. We now have several different color alphabets that can stick to a manipulative foam board to work on his spelling. He is already learning to say both his first AND last name when I point to them which is progress! He has been good at spelling “Charlie” but I want him to get the second half down soon. I see no reason he shouldn’t. He’s really bright. Speaking of bright… He started making a new request those weeks. He would take my hand and push it toward my table lamp if it was on. So I asked him “do you want the lamp off, Charlie?” He pushed my hand again. “Use your words son, you say: Lamp Off” and HE DID! About every other day at some time or another he would request this until one morning he just blew me away. He staggered down the steps, eyes barely open yet and walked right to my table. He pointed at the lamp. I didn’t flinch since I’d gotten fairly use to it at this point and I prompted him expecting my two word response in return. Use your words Charlie. He looked like it just got all over him he shook his head. The first word was stuck in there and didn’t wanna come out but he wasn’t giving up. He shook his finger at it, then his head some more, and finally stuttered a bit but said “I want lamp off!” Then he just grinned at me. My eyes huge with amazement. “WELL OK BUDDY! You want it, you got it! Way to use your words! HIGH FIVE!!!”

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By the end of our last week at home I could tell he was missing his friends. He even said so! I couldn’t make out the entire sentence but he said something in a sad tone and said “Dustin”. Dustin is our ABA and camp leader and Bear ADORES him! Rightly so. The man is a true testament to his profession and just a good dude as far as I’m concerned. So you can imagine how happy he was to be back at both camp and ABA come this past Monday. He did great too! Lots of spontaneous talking and asking for toys. At one point, a lovely lady named Toni who works upstairs at the foundation was leaving. She said “goodbye” to us all. Charlie said goodbye too. Then she said “see ya tomorrow” on her way out the door. Charlie said “see you tomorrow!” Dustin and I just looked at each other completely stunned!! He’s never said that before…wow! Ha! I remember this time a year ago he was in camp and I went to pick him up after therapy one afternoon. He was siting at a table finishing up while I talked to his OT. All of a sudden Charlie got up, walked over to me, gave me a hug and said “hi, bah ba-ba bah ba ba” which tickled me to death! That was the first official greeting my son had ever given me..or anyone I know of. Now he’s always greeting me with hugs and kisses, and he’s telling people “see you tomorrow!” UNREAL! As we were leaving Friday one of the girls helping with camp stopped me in the parking lot. She wanted to tell me that Charlie had taken her over to the door because he wanted to go outside (it had rained and they missed water play that day) “awe” I said “he’s done that to me before too”. She continued though…”yes, but he SAID OUTSIDE when he did it”. “He did? Without his communicator book? THAT’S A FIRST! Yay, Buddy!” He’s really learning to use his words it seems!
Words can’t express how proud I am of him, how hard he works or the gratitude I feel toward the therapists that have worked with him to help get him here. It’s the most amazing thing I’ve ever had the chance to be a part of. Oh, and you better believe we aren’t done yet….not if I have anything to say about it. Not even close!!! :)

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4 Comments

  1. Jackie Ross-Barber says:

    Great Job Using Your Words Charlie! The More You Use Them The Easier It Gets! Before You Know It You’ll Have More Words Than You Even Imagined!

    Mom Please, Please Email Me At Ladyjack111@Live.Com (All Lower Case Letters) I Have Some Questions For You Regarding The Food Therapy You Are Doing. I Desperately Need Some Therapy For My Son. I’ll Try And Be Brief But Any Input Or Help You Can Offer Would Be So Greatly Appreciated As I Am Just Starting Out And Need All The Help And Suggestions I Can Get. Thank You So Much.

    Jackie Ross

  2. Lori Burgess says:

    Way to go “Charlie” I am so proud of you!! Love u!

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