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Transcript of the Student Assembly at SHS on April 1st, 2014.

Written By: teamcharliebear - Apr• 29•14

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Good Morning. My name is PJ and I’m here today to explain why your hall has recently turned this lovely shade of blue. Up until now, Blue has been known throughout our community as the color of Child Abuse Awareness, but it stands for more than just that. It’s also the color of Autism Awareness. For some these two causes often go hand in hand, and I see no reason why we can’t share the color and our community to join forces to protect the ones we love. If you are anything like me you’ve probably grown up being taught about “stranger danger” and have heard a least a little something about abuse. What I didn’t know was anything about Autism. Why would I? There was no one in my family that had ever been born with the disorder before. It’s true what they say “it will never be important until it happens to you”. However, I want you to realize that by the time I get done talking to you today at least two children will be diagnosed somewhere in the united states, and many more are still undetected due to lack of resources and insurance.

This past Thursday the new statistics show that 1 in 68 children born will be diagnosed by age four. The reason your hall is Blue is because it’s five times more likely to be a boy than it is a girl. That’s why Autism Speaks uses the blue puzzle piece and the blue light for their “Light it up Blue” campaign to spread awareness. They say it’s as many as 1 in 48 boys. Let’s think about that for a minute. The day my son was born at Northcrest he was 1 of eight babies born that day. Just in this town alone! How far do you think you’d have to go to get the other 60? I doubt you’d even make it to a Nashville hospital to hit the first 68. So how many children in Tennessee alone will be born today that will be diagnosed with autism by their fourth birthdays? It’s staggering to think about, but that’s why I am here. When I was in school I walked down C Hall every single day to get to the band room where I spent a large portion of my time. I always smiled and waved at the special needs class when I saw them. Probably thinking that by being nice, and treating others the way I wanted to be treated I could somehow escape the “karma” that would lead me to the road I’m on today. Autism, and all disabilities were nothing more than some mythical creature that I’d only heard of. Something a friend of a friend had once upon a time. Something I would never need to know too much about. The prevalence is growing and it is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. Autism is in all racial, ethnic and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than girls. Family income, lifestyle and educational levels do not affect the likelihood of an autism occurrence. Tommy Hilfiger has a daughter with autism, Dan Marino, Sylvester Stallone, Toni Braxton, and Holly Robinson Peete all have sons with autism. John Travolta and Kelly Preston’s late son Jett had autism. I have a son with autism as do many of the friends I sat in these chairs with just a few short years ago…

With the numbers on the rise like this, I was fooling myself thinking I could escape its clutches through good Karma. One day, and soon I fear, It will be your friends, your family, YOU who has to know about this and then what?
No one is paying me to talk to you right now or to do your lights. I’m not representing a company by doing this. I’m here because I don’t want what happen to me to happen to you.

This is our story, and my journey into Autism:

(taken from the our journey page at TCB.com)
Charlie was born February 23, 2006 after an eventful pregnancy, to say the least. At 14 weeks, on a visit to a family member’s house out of state, I slipped on my footing and bounced on my rear down 5 steps. . At 26 weeks another car slammed into the back of mine doing about 50 mph! The test results all showed the baby was fine and he was born a healthy 8 pound 2 oz. beautiful little boy. When Charlie was about 9 months old I had my suspicions that something wasn’t quite right. For starters, he was far too laid back and content to be my child! He was happy for hours in a swing or car seat. Rarely raising up his head to look around & always smiling! So unlike his sister, the whistler, who was a ball of fire and energy and into everything! He wasn’t trying to talk yet and he had this strange motor skill developing with his right arm. He would pinch his middle finger and thumb together and wave his arm in and out in an awkward fashion. I seemed to be the only one who noticed this. Everyone kept saying “He will talk when he’s ready” & “His dad didn’t talk until he was five”, but I just felt something was off. It’s not like I wanted something to be wrong. You spend enough time arguing with doctors and family that you begin to believe they think you do. Time just kept passing, and CBear never talked, but he was sweet. Still, he missed milestone after milestone on the baby charts and I grew ever more concerned. Finally, by age 2 the doctor heard my plea and started the evaluations. Why is everything so slow?! A waiting list, then a hearing test. Yes, he can hear. Another waiting list and a long evaluation for autism began. By this point my marriage had all but gone down in flames. I’d been sleeping on the couch with the kids for years or in another room all together. We were virtually strangers. I lost my job in January 2009 and our house would soon follow thanks to that. Sitting in a cold white room, in a month I don’t even recall, I remember the doctor coming in. I don’t remember her name.”He has autism. It’s severe.” She may have even said “I’m sorry”. I was already so numb…I couldn’t feel anything. It’s not like I didn’t already know. I knew long ago. I didn’t know what autism was really, and I still wouldn’t. Not until Charlie was five. It’s not as if I wanted to be right. I’d have given my LIFE to be wrong right then! But I’d spent so much time with everyone dismissing me that I had no fight left for a while. Which was unfortunate, because my son needed me. Now, more than ever, and I wouldn’t be “in it to win it!” For two more years. The doctor that basically offered her condolences upon diagnosis moved north shortly thereafter. I haven’t seen her since. We had no direction. No history in the family with this and I was about to learn what denial was all about. For more than a year I’d been trying to tell people something was up to no avail. Now, everyone was looking at me saying “Do something!”. Coming from someone who had just lost a job, a house and a marriage? I wasn’t feeling like I could save anyone right then. I was more in the position, “You said he was fine. He’s fine!” I’m telling you, it wasn’t pretty! I’m not one of these perfect super moms who had it all together. I see these other moms who got their child’s diagnosis and got them into therapy in no time flat! These women hit the ground running with programs, support groups all sorts of unimaginable things. It took me a long time to get here, and I have a lot of ground to make up still. My wakeup call came in an unlikely place. Once the dust finally settled from the divorce I found a job and a place to live. Still I was in a daze and Charlie wasn’t progressing. It seemed we were all just going thru the motions. Then the most miraculous thing happened. I started dating again and my boyfriend (now, soon to be husband) had the guts to ask about my children. He made one tiny statement that changed the course of everything for my son, and I will forever be grateful. What was this profound statement you ask? “Looks like if I had a kid with autism I’d wanna know something about it!” Now, I’m sure he’s not the first person who tried to reach me, but he was there at the right time when I was ready to hear it. …and that’s all that matters. I’ve been on a mission ever since. Charlie has fought disability and insurance. All the government so called “help resources” more than once to get the treatments he needs. Monday – Friday he receives 11 hours of therapy outside of school every week. Plus summer camps. With the help of visual aids and persistence, Charlie is now considered an emerging communicator.

Feel free to look us up online At TeamCharlieBear.com and follow the little guys progress. He’s quite the trooper and very inspiring!

Let’s get to some facts about autism Ok?
What is Autism exactly? Autism (or ASD) is a wide-spectrum disorder that affects the brain’s normal development of social, communication and some motor skills. This means that no two people with autism will have exactly the same symptoms. Some people will have mild symptoms while others will have severe ones. It can attack a wide range of behaviors and motor skills and falls under a blanket of diagnoses including Asperger’s syndrome. You’ll find Asperger’s syndrome on the higher functioning side where as my son Charlie, would be considered severe and on the lower end of the spectrum. Because of the varied degrees it is often hard to recognize and diagnose in some children who are verbal and seem on track with their development with the obvious things like talking, and eating with utensils or being able to express wants, likes and needs. It takes actually knowing the child and an evaluation of the behaviors that are causing concern to catch it. It can be as simple as social skills that are really the issue, but for others it can be much more severe.

I mentioned my son was nonverbal, meaning he doesn’t talk. Please note this isn’t the same thing as not having anything to say or being deaf. Charlie gets visibly upset when you talk about him like he isn’t standing right there. Imagine if you were trapped in your own body and not able to make your own mouth form the words you so desperately wanted to convey. It’s one thing to not be able to chit chat with your friends, but not being able to tell someone what you need? Imagine being sick and not being able to tell your mom what it is that hurts. When you have to go to the bathroom, when you’re hungry or thirsty or just plain tired..? How frustrating would that be? I may be old to you guys but I remember being in this school and thinking I was grown. I didn’t want to ask anyone for anything…some kids don’t have that option; some kids don’t have that luxury either.

Our friends on the spectrum also have a tough time with something called Sensory processing. Things like sights and smells and sounds can all be very overwhelming for them. For you and I to walk into a mall might be no big deal, but to them it can be a virtual battlefield! All the noise and unfamiliar people and smells of a food court. The clicking of a thousand shoes on hard tile, even the hum of overhead fluorescent lighting. Yes, I said lighting actually gives off sound! How about that? I don’t know that I would much care to listen to it either. Yet, these all happen at the same exact volume to them. Heaven forbid you even think to throw in a crying baby on top of it. So if you’ve seen our friends struggling with these issues you might notice them rocking back and forth, holding their eyes or ears in public. Perhaps , even making strange noises all on their own. There is actually a very good reason behind those things. They find them soothing in that moment. Their own noises blocking out those around them that make them uncomfortable. It’s called noise filtering, and if it helps them deal with their surroundings we shouldn’t stare or make fun of them. Simply try and understand where they might be coming from and how much courage it’s taking them to actually be where they are at that moment. People tend to fear and sometimes even make fun of what they don’t understand. Now I hope you’ll be amongst those who DO understand just a little bit better how it feels for those living on the spectrum.

The thing about kids with autism is that they grow up to be adults with Autism. As of today there is no known cure. There are a wide variety of theories on the cause. Most notable to date is the vaccine theory which I will only say I don’t believe is the cause in our case. However, It’s not my job to figure that out. My job at this point is to focus on the here and now. How do I treat it?

With the right combination of therapies a person with autism can grow up to lead a very productive life, but it takes a team! Therapists, Teachers, parents and family and friends all need to be supportive and consistent with what’s going on in the treatment plan for this to happen. Our friends on the spectrum rely heavily on routine, and while small changes to it can challenge them to rise to an occasion. A big change can actually cause setbacks and undo a lot of the work and progress.

There are many different therapies that can be beneficial. For us, the right combination came in the form of ABA, OT, and Speech therapies. Sounds like alphabet soup right? I agree. I never thought when I was sitting where you are now that one day I was going to need to know all this. Sure, I thought I was going to end up on a stage for a living, but I just thought it would be a little bit different. I wish someone had told me I would need to really pay attention because I was going to have a child that would need me to be part lawyer, part advocate, part therapist and maybe even a little bit clairvoyant! Allow me to translate…

ABA stands for Applied Behavior Analysis, but if you ask me it stands for THANK GOD for these guys! They cover everything from playing and turn taking to potty training. Teaching our ASD friends what acceptable behavior is and what isn’t. Perhaps one of the biggest challenges our friends on the spectrum face is the lack of social skills they possess. It’s not that they don’t want or crave friendship. It’s simply that they lack the ability to carry on the banter of back and forth conversation that you and your “typical” peers might be able to have with one another. Depending on the severity of the case they may not even be able to carry on a conversation at all. When they can they often lack the sarcasm and humor that you or I might use. Meaning If I were to say, ”yeah, great idea” and roll my eyes. My friend on the spectrum might miss the noted social cues that you’ve learned mean I actually DON’T think that’s the greatest of ideas. They take us at face value and believe our words are what we actually meant to say. How beautiful and genuine is that? On the flip side this means our ASD friends will also tell us exactly what they think without sugar coating it on our behalf so we can trust them to tell us the truth. How many friends can you say that about? It’s actually a little bit of a gift if you ask me. There are enough fake people in the world right?

OT, or Occupational Therapy concentrates more on the fine motor skills. Getting dressed, eating with a fork, being able to write your name with a pen or pencil, even lacing up your shoes! All of these things you and I take for granted on a daily basis, but I have watched my son work endless hours to accomplish these. Some he has yet to master. The same joy you feel over getting your driver’s license, I’ve seen him experience by finally putting on his own pants for the first time alone at age seven. Each milestone is significant and worthwhile because he knows how hard he fought to get there, and I couldn’t be more proud of him.

Speech is obvious; we are trying to motivate him to talk more and working on mastering the words he can find inside himself.

Sadly many treatments often go uninsured in our state, but we are working hard to change that. As a community we are busy lighting up the town blue this year to spread awareness on a cause that is growing by epidemic proportions. You can help us shine a light on autism as well by lighting your homes blue! All you have to do is get a blue light bulb at Lowe’s, Walmart, or Home Depot and replace your regular porch light for the month of April to a blue one. Technically, April 2nd is world awareness and light it up blue day, but in our house it’s every day out of the year. I never turn mine off. Autism is my reality. I hope you will join us in lighting it up blue this year at your house. If you do, please take pictures of it and post them online to our Facebook page found under Team Charlie Bear.
Don’t forget tonight there will be a huge block party at the square starting at 6 hosted by the United Way. Blue snow cones, popcorn, and cupcakes will be on hand as well as face paint and balloons. However the real kicker will be the lighting of our historic courthouse for the first time ever! As long as I’ve lived here, which is my entire life; I’ve never witnessed an event like the one that will take place tonight. We will be lighting the courthouse blue in honor of those living with ASD. The mayor has agreed to leave it blue all month! How awesome is that?! Be sure you thank him if you stop by, and don’t forget to say Hello to me and Charlie :)

One last thing I want to leave you with before I go…I made a video for awareness and to thank those that went blue last year in honor of Team Charlie Bear that I will have them play in a moment. I am happy to say your school will be part of this year’s video. I am looking forward to seeing the final results. As you know the stats have changed since last year, but the message remains the same. I hope you enjoy it, but before they push play I want to leave you with this thought…

Change starts with you. You can be the change you want to see in the world. Did you know that? You may only be one person, but you are ONE person. When I started this my goal wasn’t to turn the entire county blue. I wanted to turn our courthouse blue…that was it. Now look what it’s become? I know you guys have an anti-bully group in this school but have you ever heard of a best buddies group? Some schools have a program where the typical peers will befriend the special needs class and have organized activities that help them find ways to relate to one another so no one ever has to feel alone. Just something to think about. Think what you could do to better your school, & your community if you tried because in the end… Nothing will change until you go out there and make it the world you want it to be! It’s all up to you.
Thank you to the staff here at SHS & Dr. Grimes & Ms. Wilson for allowing me to be here today. Thank you Students for coming to an assembly that was optional and being willing to learn!

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