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It’s not just about educating the children…

Written By: teamcharliebear - Jul• 16•14

When I began this proactive stance and tried to become involved in the Bear’s education, something occurred to me. I had absolutely no idea what I was doing! I probably sat through at least 2 IEP meetings before I ever knew what IEP stood for. Sad I know, but it doesn’t make it any less true. Slowly, I began to learn my rights as well as the rights of my child, but these were things I had to find for myself. Trust me, I’m still learning.  No one tries to help you find these resources either. I have a couple theories as to why but none of them are favorable so I will keep those to myself….for now. What I do know is that they call these intimidating meetings and though you can take an advocate with you that knows the laws, they are hard to find. It’s even harder to find one that is more forward than me when needed. So what am I getting at? I am going to add some resources to not only this page, but a downloadable flyer of places that can help you after getting a diagnosis. Autism doesn’t come with an instruction manual or a phone book of helping facilities….but it should! Soon enough, it will. Even if I have to put the thing together myself!

The thing with our public school systems are that they are full of well meaning individuals…They just aren’t being allowed the funds to handle the flow of children and their needs. There were no actual one on one assistants at my son’s last school. They were all shared. In fact, my son’s “one on one” was shared with another child much like my own. Both of them qualify as a flight risk. One of them even has the police documentation to prove that he has wandered off before. Yet, without the funding for more assistants and proper tools, these children are not getting the kind of education that a facility specializing in it would allow them to receive.  You’d think that given the rise of the condition that these specialized schools would be everywhere. They aren’t.  After a lengthy conversation with the Nashville Mayor’s office I was referred to a school that was too far to drive him to every day,  and leaving him? Unfathomable to me!

The good news is that Nashville is getting one at the AFT. I will be giving an interview to Adam at News Channel 5 on behalf of the school Thursday morning.  Not sure when it’s scheduled to air but check our Facebook page and it will likely have footage. To say I’m nervous would be less than the truth. Honestly, I’m kind of torn. Yes, I know what an opportunity this is for these families, and I want to make sure that it succeeds. I’ve  witnessed the miracles that come from the AFT first hand, but it will be difficult knowing that  my child will not be able to qualify for this. We can’t afford the tuition. He also can’t benefit from what we might potentially raise through my nonprofit org Plan It Au-Some due to a conflict of interest.  This will not discourage me.  I know that the more money they raise and the more children that are in demand of these concentrated types of education mean  more schools eventually.  Translation being that the price will either eventually go down, or at the very least there will be more schools, more opportunities, and perhaps even government support in the future through insurance, grants or SOMETHING!  They have every reason to want to make good use of the time they have to teach our children. Why wouldn’t they want to see them living independently?  They wash their hands completely around age 22 and no longer provide any treatment options or school system. Yet they will send them money to just live as an invalid rather than reach them when it could change everything about their futures…It would save them millions!!!! Regardless, I hope you will consider supporting this venture. It’s so very needed and until enough people stand up and say so, it will continued to be swept under the rug.  Like that kid you knew in school way back when. That one guy or girl at church. Your friend’s child. Your child….My Charlie! If I can help this cause I am going to. I truly hope you will join me.

Next up is a long awaited Camp Update!!

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I know, I’m terrible at giving updates. I actually use to update it weekly with his progress, but I simply haven’t been able to keep up this go round.  He had a rocky week or two during the first session we attended. He missed the first two weeks because of wedding and honeymoon business, but we were excited to get back. He always makes great progress over the summers at the AFT. It’s more of that “concentrated learning” I was talking about earlier.  Charlie was thrown out of his daycare while I was out of town. Third strike and all. His aggressive behavior had worsened due to all the changes. No surprise. Changes are the number one cause of setbacks in our household. He wasn’t the least bit excited to be at camp that first day, but it didn’t take him long to start showing signs of his old self. camp 14 03He was obsessed with getting in the new pool they got this year.  Sadly, because he isn’t 100% potty trained  he still had to wear his pull up in the water.  At first, I thought nothing of it.  Then a counselor pointed out that last year he hadn’t been in overnight pull ups. We were still squeezing him into the largest diaper size they made and therefore he was able to wear “little swimmers” in the pool.  Yet, this year, he was soaking up all the pool with his pull up and it was getting obliterated in the process. Blech!  There was only one thing left to do. FORCE the underwear issue again.  Given all the obstacles lately, I admit I was less than thrilled with this idea, but I was less thrilled about the fact that I have been changing diapers for ten straight years..so…. BRING ON THE FIT THROWING!

camp 14 1I was pleasantly surprised that I wasn’t the first one to tackle the issue this time. Did I mention we LOVE our ABA/camp director? He bribed the bear last Thursday to get him into the pool. If he wanted in, he had to wear them. It worked. Motivation is always the key.  Just as important is follow through.  That afternoon after camp was our ABA session and we did three 1 minute long timed trials of him wearing the undies. He hates the feel of them. It’s very different in sensation as well as “we just don’t like different cause different means change, mama, and we ain’t down with that!”  Well, he got down with it, and fast come Monday morning.  I got the kids back from their weekend at their Dad’s just before time to leave to get Bear to camp that day. I got him dressed in the swim trunks with a pull up underneath and away we went. I had remembered to pack his food, but no pull ups! When the one he had on came off he was given a choice between two pairs of undies. We haven’t looked back! It’s now been over 24 hours in “big bear undies” with no accidents! I am in shock, and if i weren’t so exhausted from following him like a hawk and getting up with him at 2 am I would likely be throwing a parade for the little booger down our block right now!  I think part of me is still in denial. I mean, if you had changed someone’s diaper for ten years would you just believe after one day you were scott free in that department. I didn’t think so, but there is HOPE! :) He is also holding his own pediasure bottle again…no spills! He’s also now using his occupation station at the new house just like he did at the old one. He’s adjusting!  It may sound small, but these victories are all leading to an amazing young man that I will never give up on!

camp 14 02One other cool thing that developed last week (4th week for him of camp).  He and one of his friends (who I will refer to as “Clifford” for anonymity purposes) were playing a game all their own. Remember how excited I got last year on week one when he played tag with another little boy? Well, “Clifford” had sort of attacked the bear while he was sitting on a wrestling mat. He wasn’t being too forceful, just playing gently. Well, as you know the bear has a short fuse lately and when they began to tell me this story I flinched! I just knew Charlie went all pinchy/crabby claws on poor Clifford whom I ADORE by the way.  However, they continued and told me that Charlie wrestled back and never got aggressive. Both boys played very nicely with one another and I’ve heard are good friends….my son has a friend. Suddenly, I want to throw him a birthday party next year. Clifford is definitely on the guest list.

Are you guys getting all this? I know it’s hard for me to wrap my sleep deprived mind around, but this camp has helped bear in ways that even as a mother I have a hard time describing. They aren’t just trying to get these kids out of their worlds and into ours. They teach us as parents how to penetrate THEIR worlds. From there, communication is built and we can teach the person with ASD how to function in our world and be as productive and independent as possible.  It takes both. The education of the parents and children and a give and take on both parts to walk outside your comfort zone.  Only then will we be able to make a real difference.

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What has your child’s public school taught you as a parent on how to communicate with your child or vice versa?

Think about that and then tell me this…. Are schools like this really needed? Who will it benefit?

 

“Them there is fightin’ words!”

Written By: teamcharliebear - Jul• 13•14

camp 2014My head is spinning. This is INSANE! I have driven myself almost completely crazy, at the very least to the edge of death by exhaustion (yup, pretty sure that’s a thing).  Just to get this child the help he needs, and now….? We are losing his insurance …AGAIN!  Why? Because me getting married somehow made him less disabled.  Try explaining how ridiculous  that sounds  to the person on the other end of the phone at the local office will only get you a “you’re preaching to the choir, sweetie”.  I understand if we can no longer receive a check due to the household income being raised now that someone is actually employed that lives here! The Horror!  However, only TnCare Select (the disability insurance) covers ALL the treatments needed for autism. With regular TnCare (the stuff Obama did) depending on the branch,  some things are covered. Speech, Occupational and sometimes Physical therapy as well, but not Behavior therapy (ABA). Never that! Why would anyone want to cover the one therapy that addresses the biggest hurdle in people with ASD?  That’s just crazy talk! Of course, that’s provided he is still eligible for TnCare at all now.  If he can get back on that my weekly total of out of pocket expenses will be $240..at best. If  he doesn’t get picked up, then they won’t backdate the therapy he is receiving now. Meaning I won’t get reimbursed for the $225/week I will spend on the OT and Speech until then.  For those playing along at home that equals $465/week in therapy. Did I mention he is also in summer camp. Another $250/week which is NEVER covered by insurance and he was using his disability, plus the last tax income I was likely to ever get.  Meaning that, I like many other mothers in this situation, simply can’t work. Yet somehow, I’m always on the clock.

To add insult to injury I just started a nonprofit organization with the creator of the site Cartwills.com for just this kinda thing. Naturally, there are no paychecks for us, and Charlie isn’t a candidate for the funds we raise. That would be a conflict of interest. Besides, we had insurance, and there are plenty of kids that need treatments, but can’t afford them. Why? Because Tennessee keeps refusing to join the other states that have signed a mandate to cover these treatments for our kids. They somehow refuse to see that by denying these treatments to those that need it now will only cost them more in the future. Those that miss the early intervention phase have a hard enough time pulling our kids through the muck and maze. I know, because that is my life every day! I’m not alone in that, and the other kids and parents know something has to change or our kids with ASD will be adults with ASD.  Then what happens? I’ll tell you….

The parents take care of them until they die or physically become unable. All the while, everyone is drawing SSI now. The folks for being retired, and the child with ASD has been drawing his check since 18. When the caregivers die this person… This loving soul locked inside it’s own mind all these years.  This human being that was denied the treatment that might have improved their quality of life.  If only they had been given the chance they could be living independently. Perhaps even holding a job…maybe even testing off the spectrum completely!  No, this person with ASD will be supported by the state in a “home” of their choice. Some nursing home that they will have to pay for, and he or she will be getting the best care the least amount of money can buy.

Yup, that makes total sense.

We had insurance that covered all his treatments for a glorious six months. He has had insurance for one year of his life other than that and it only covered part of his treatment. Even still, one and a half years total is all that he has ever had and he just entered his third year of treatment.  I’ve spent every dime I use to make on his treatments. We sacrificed food, clothing and if my now husband(then boyfriend) hadn’t stepped in we would have been homeless too! I’ve been through three cars and 2 jobs to drive him to Jupiter and back for appointments that are only adding on more appointments with different doctors and additional therapies.  It’s never going to end, and if the state keeps ignoring the need it’s also never going to get better either.

I’m not sure I am willing to accept that.

Bill Jones would’ve said, “Them there are fightin’ words!”, and I gotta tell ya…He’d have been RIGHT.  These people don’t wanna tangle with the likes of me. Yet, by the looks of it,  they are going to find that out the hard way.  I always knew at some point I was going to have to storm the castle so to speak. I reckon it’s  about that time.  Sadly, I’ve never learned to pack light and you better believe I’m coming! I’m bringing an army with me when I do.  Eddie Murphy, another fine man (of no relation that I’m aware of), tried to tell you… “I didn’t wanna do that, Baby. You brought that on Yo’Seff!”

Time is on time’s side. My side wants now!

Written By: teamcharliebear - Jul• 02•14

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I wish I could write some amazing and informative blog, but I just can’t. This is the first time I’ve even given myself the time to consider trying. Funny how when I need to write to purge my head of the clutter I can never figure out where to begin. Thoughts are scattered and flying every direction. My head would be a scary place to be without a helmet and full body armor. Just saying…
I’ve never loved and hated anything more than I hate and love being married. Being with William is better than great. He plays with Abigail and cooks dinner while I deal with Charlie. It’s nice having a team mate so I don’t feel like Abigail isn’t getting the attention she needs. Especially at times like these when I am literally wrestling with him daily and he can’t be left alone for a minute. Transitions are tough but he usually adjust fairly quick. However, he’s never been so aggressive before. Charlie will grab his chest and squeeze as hard as possible. He left the most horrendous bruise on his chest a week or so ago. Now, he’s started scratching his face too. Grabbing his cheeks the same way as he was his chest. I’m seriously considering mits with wrist locks. I can’t stand to see him hurting himself this way.
It’s getting better… I think. He screamed for a few days solid, and that’s lessened a bit. Wrong movie, wrong food but mostly just the wrong house. He wasn’t sleeping like he usually does either, so we were both extra tired. Asleep was the only time he wasn’t screaming. He even woke up a couple nights hitting himself and I had to lay with him and hold his hands until he fell asleep. It’s been heart wrenching to watch him go through this. I wish I could make him understand how much better things just got. It’s up to time to make him understand, and I’m not good at not being able to “fix it”. Being out of control of the situation is not a happy place for me. I start looking for something I can occupy myself with. You know, basically masterbate my mind into thinking I’m accomplishing something when the one thing I really wanna tackle is out of my reach. Genius right? Thanks, I try.
I will say I’m most surprised by how easy all this is coming to William. He went from having his own house to having a wife and two kids..plus their infinite amount of baggage (both literally and figuratively) overnight! He had a look like a deer gets in headlights a time or two that first day. I would’ve had to assume he was dead if he hadn’t looked bewildered by it all at least once. Even still, he acts like he’s been doing this his whole life. I really got lucky. We all did. Hopefully soon everyone will realize it. I believe it’s obvious that Charlie loves William. It took a day or three for him to cuddle into someone’s side while they’re sitting on the couch. It’s usually me, but not this time. He cuddled up to William. I love watching them. William is patient and will always wait for him to find his words to say hello, goodbye or goodnight. He’s never used the kids as a tool or tried to force a relationship with either of them. He’s the video game whisperer to Abigail and she adores him…and his baking. With the bear you can only have the relationship bear chooses to have with you. With one of my friends he will pull her by the hand to the couch and put his feet in her lap. She’s the foot rubber and back scratcher. William just waits. He lets Charlie come to him and doesn’t try to charm him, but has managed to anyway. Careful Son, that’s how he landed me too! He can get charlie to use his words and is apparently paying attention to the things I do that I’ve learned from his therapists. He must be listening even when I think he isn’t cause I’m rambling about theories and things to work on. Having someone help with the follow through of his treatments..? There are no words to describe that. Somewhere, underneath all this exhaustion, is a very grateful chick.
I’m hoping by this weekend I can make a big announcement. It all will depend on my meeting Thursday. Just know that there is something really big in the works…
Stay Tuned! :)

It’s been a good run…

Written By: teamcharliebear - May• 12•14

image Took Mr. Bear to a new Doctor this week. A Neurologist. Truthfully we probably should have done it sooner considering how severe he is. It takes me a while to do the important things. I’m very resistant to change and I always feel maxed out already. Like if they throw anything else on this load I’m bound to blow a fuse! Up until now, Charlie has never been on any medication. When he gets sick giving him medicine requires at the least a lot of creativity. At his worst it requires a few wrestling moves, a poncho and a tarp! I often imagine the police showing up with him screaming, while I’m sitting on his chest trying to force medicine in his mouth. Him laying on a plastic sheet (for when he spits it out). To a bystander I’m sure it looks like a mob hit is taking place! Needless to say, this is a scene I would hate to explain or live through on a regular basis. Then again, it looks like I may have to.
Charlie has gotten increasingly violent and very stemmy. He even attacked the assistant on the special needs bus. She’s a nice older lady and she probably bruises easily, but that doesn’t excuse his behavior. It could be his frustration at not fully understanding why his routine has changed…again. He rides the bus home now too and his therapies are in a holding pattern. Maybe he just doesn’t understand or maybe he’s angry.image I only have theories where he is concerned, and sometimes I’m just out of ideas. My brain is on overload with my life in a pending status. I have to pack and move in less than a month. I have to send off for new documentation (birth certificates and social security cards) before I can even enroll them both in two different schools. Abigail will be in middle school by our new district standards. School is almost out and I haven’t even seen the ones I have in mind for next year. There is so much to do and I get overwhelmed and don’t know where to start. Now this new doctor wants to try him on a daily med that he’s hoping will mellow the bear out a bit. Not to the point of drooling on himself. Just to the point he can focus and not be all over the place sensory wise etc. He is presenting what I call turrette type behaviors. These are choppy shaky type movements that had me concerned he may be having seizures that were undetectable. The EEG could rule these out, but glueing electrodes to his head and telling him to not touch them and sit still for an hour plus? Neither the doc nor I saw that ending well! They wouldn’t get an accurate reading and we’d go through unnecessary hell trying. So, we attempt this pill I get to brake in half and crush into something for him to refuse to eat most likely. If only they could make medicinal bacon! Oh well, here’s hoping he starts loving yogurt.

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!