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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! :)


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!!!”


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!!! :)

Week 1 of Bear’s Summer Camp w/AFT: TICK Tock! Here we go!!!

Written By: teamcharliebear - Jun• 07•13


It finally arrived! A Monday that at least one person was looking forward to. I know, I’m just as surprised as you are that such a thing exist, but it does!  Though I will admit that from the pic above you can tell, Charlie was slightly less than thrilled with his swim/water play attire the first day. He did eventually get accustomed to it I am happy to report :)  I have to say that the thing I was the most concerned about was the schedule. Charlie is use to pulling a lot of hours and he does adjust rather quickly for the most part to a set routine, but  this just seemed like we might be borderline stretching it to me. However, I’m the one who made this schedule and I wouldn’t have if I didn’t think he could hack it! So just for reference here it is:

Camp is  Mon-Fri 9-3. On Mondays he has ABA for two hours right after until 5. Nothing but camp Tues. On wed. he has Speech after camp for an hour till 4. BUT ON THURSDAY…we leave camp round 1 to drive an hour to our other therapy center to pick up all his other therapies in one day. He does eating therapy 2-3, speech 3-3:30, he gets a thirty minute break until four, and from 4-5 he’s back at it for an hour of OT before he can go home. Friday is just camp. ….tough kid huh? …THE TOUGHEST!

Here’s what amazed me though… On the second day when I arrived to pick him up to take him to camp he came to me! He is usually oblivious to my arrival and off playing by himself, but not that day! He approached me just after Abigail had gotten her hug. Upon seeing that, he reached his arms up to greet me the same way! Mad social skills right there, and he wasn’t done yet! I dropped him off and getting out of the car he accidently hit my sunglasses and bumped my face. He jabbered something and jerked his hand back. He didn’t say “sorry” but that’s what he meant! It had that tone, and cadence to it! That’s a social behavior he’s never done before!!! He has NEVER APOLOGIZED for ANYTHING. So I naturally acknowledged the effort and said, “oh that’s ok. I know it was an accident. Thank you for apologizing!” :) YAY!  When we went inside he was just so at home with his friends and was smiling when I left. It was just like he knew “this is what I do in the summer, these are my peeps…I’m good”.  Kinda like watching “awakenings”…AMAZING!   They play in water most everyday when it’s not raining and when I pick him up his hair is all curly…..SAMSUNG

Or at least it WAS before Thursday night! Evidently on Thursday while playing outside wonder Bear managed to happen upon a whole nest of seed ticks!!! I picked him up just as they were coming inside and I just thought it was dirt. I put him in the car and he was tearing at his skin. I looked closer and realized the dirt was MOVING!! *SHUDDER* Needless to say I got him out of the car, we changed his clothes and did what we could. He got a shower once home, as did I…and the car is freshly vacuumed…though I’m sure it needs another round! Still,  Charlie needed more detailing…So He got a hair cut too! I think he needed it. Shows off those big ole blues….2013-06-07 08.09.45-1

OOWIEE THAT BOY IS GOOD LOOKIN’…if I do say so myself! ;) Let’s hope next week he can keep out of the ticks and we get even more social because I really love watching him just blossom like this. He is telling people “HI” more readily, as well as “Bye”…just this week on Friday he was playing a game of tag with another little boy! It was completely their idea! They were running and laughing and having a ball doing something totally spontaneous and organic. My little boy has a friend *melt* This camp, that place….it just does something to him…FOR HIM. He seems happier, and that alone makes it worth every mile. …1200 this week, but who’s counting ;)

One down…8 to go!

You would be 94 today…

Written By: teamcharliebear - May• 29•13

charlie, mumsie, abigailThere are so many things I wanna tell you. Things like “Happy Birthday, Mumsie! How does it feel to still be the best looking person in the family at your tender age?” You use to cringe when I said things that resembled my father. In truth, there wasn’t much of anything I loved more than getting you in front of your church family, as you called them, and saying something I thought would rattle you. Things like “Now don’t make me hafta come get you off the bar at the Piggy Pit at 2am just cause it’s your birthday. Try and act like ya got some sense…this weekend AT LEAST!” The joke would eventually be on me by the time I hit my teen years. You’d gotten wise to all my tricks and started surprising me right back! You’d hardly miss a beat before you were nodding in agreement and saying “oh yes, I was a bit outta hand last weekend. Especially by the time the cops arrived…” The first time you did that to me I don’t think I even knew what to say! Then again, you always did know how to render people speechless. A simple smile, a kind word…the way your soft hand would brush my hair out of my eyes and behind my ear…I miss that. I guess, if I could I’d call you today to listen to your voice. I’d tell you how great Abigail did in school, and how this year she didn’t cry because it was summer! Sometimes I swear that girl was adopted! She seems a little more kin to me this summer anyway..haha! I’d mention how Charlie is going to summer camp a week from now and we are excited about all the possibilities that means. I know you would tell me how smart Abigail is and how she has always been “sharp as a tack”. You’d gasp when I tell you about his camp and be so excited…you always were. I know you would tell me “he’s gonna get alright some of these days”. I use to let it bother me sometimes…the wording. Like he would someday miraculously be cured. I knew you didn’t mean anything by it when you’d ask if he was “better”. It only bothered me because I let it make me feel like I had failed in some way because I have yet to discover the cure for autism. At least I don’t put too much pressure on myself, huh? You only wanted to know how he was doing. I know that, and…. I’m sorry. I would tell you about all the things that have made my heart heavy lately…no shortage of which comes from missing you. I don’t think the family was ready to lose its matriarch. Mom wasn’t ready to lose her mother. Even though I felt like you’d been attempting to prepare me for it my whole life, and it was always in the back of my mind, a measly 35 years just wasn’t enough time! I wasn’t ready to lose you either apparently. I’d apologize….like I always did, for not calling more often, but this time I would know the weight of those words. I have your pictures everywhere. You always carried a camera with you.. genius. Thank you for that. I keep a bottle of oil of Olay… Sometimes that familiar smell is enough…If only we could’ve bottled your hugs… I suppose the last thing I should tell you is I’m sorry for being selfish. While you were alive for always thinking there’d be more time…and now missing you because of the void it left in me! All the things “I” wanna say… Just know that of these things Happy Birthday to the greatest Grandmother anyone could’ve ever hoped for is at the top of the list. It’s only ranked behind one other thing…I love you, Mumsie.

The trouble with Mothers and Daughters…

Written By: teamcharliebear - May• 15•13

Four generationsThere are many wonderful things that come with being a mother and a daughter… This post isn’t really about them. It’s about the more complex aspects of it. About how one day you were just a carefree kid yourself. For the most part blissfully unaware just how clueless your own parents were with the job they had of raising you. Yet now, you have this miniture ex husband doppalganger with your attitude staring you in the face, asking all kinds of questions you think are absurd at age “almost nine, Mama!”. My mind suddenly mists over. I hear the crash of a Deff Leopard guitar lick and I start wondering why they didn’t outlaw aquanet and white rain hairspray when the ozone still stood a chance! …and She wants to know WHY I won’t let her leave the house in shorts that could double as a BELT? All I can muster is a bland “because I said so” because something tells me that “because one of THOSE in the family was enough!” is not the right response either. This argument is how my daughter and I begin most every day now. The Garment War! Coffee is not an optional thing…it’s survival!!! Things with my own mom were just as rocky but on a different level. This was our 1st year without our Mumsie so she sounded like she was doing ok when I talked to her, but I’m gathering it was a little tougher than she let on. I know it can’t be easy. They were really, REALLY close! my own relationship with my mother has faultered over the years for one reason or another, and though we use to talk about everything…its not so easy for us to do that now. We still try, and that’s what counts to me. It hurts to see her hurting, to be hurting myself and to not really be able to help her through it. The only way you insure failure in life is to cease trying though.
In short, I would say the real trouble is I’ve spent the first part of my life trying not to become my Mom, and I’ll spend the next half trying to ensure my daughter does NOT become me!!! Meanwhile …. I’ve got the next Bobbie Brown for a daughter…age “almost nine”. So I best get started on putting that combination lock on the outside of her bedroom door and window…

Dear Son,

Written By: teamcharliebear - May• 07•13



I wish I knew what you were thinking in those quiet little thoughts Eyes so blue and just a blinking Are they searching? Are you lost? Do you need to tell me something? I am trying hard to hear Just whisper to me softly Whisper in my ear…





Why do you crawl out of your bed On those cold, dark lonely nights. I find your curly, weary head In my room all snuggled tight Do you need to tell me something? I am trying hard to hear Just whisper to me softly Whisper in my ear…





Why do you sometimes just start crying Out of nowhere, nothing at all Don’t you know that I’d give anything To catch you when you fall Do you need to tell me something? Cause I’m trying hard to hear Just whisper to me softly Whisper in my ear…