Education.... One Size Does NOT Fit All!!! When the Promise of a "Free and Appropriate" Education is Just A Crock of Crap

Good Morning my fellow early risers! Today begins a new and exciting adventure in our Rainbow Rider's world! Today we will begin homeschooling our little man! This is a decision we have struggled with for quite some time. After repeatedly being lied to about our son's progress, after the school bus bullying incident, after finding out the kids in the class are told to "ignore" him when he asks for help, after being told to bring an iPod in for him to listen to when he is "distracting the rest of the class", and after being pulled from the classroom multiple times to go sit in a room by himself because they don't know how to handle him....... YES, the time has come to bring my boy home and educate him the way HE learns!

www.facebook.com/flippingnormalthebird

I'm not here to bash the public school system. In fact, I believe in the inclusion process to an extent. But after almost 5 years in the public school special education process the bullying, teasing, the just plain recognizing he is different...... it's changed him. He gets anxiety.... BAD anxiety! He's clearly depressed, he's beginning
to not like the beautiful little person he is...

So what is a Mom to do when no one will help her child reach his potential? She puts her big girl panties on, her kick-ass boxing gloves, and SHE takes control of what she KNOWS is right for her child!

We chose an accredited homeschooling curriculum just to make the transition easier - because, hey I'm new to this too and I really don't want to screw this up.


Any advice would be MORE than appreciated!


<3

Late Night Awesomeness Party and a Veggie Tale Marathon - Bed Time Is For The Birds!

We are quickly approaching the 14th episode of Veggie Tales...in a row.... and while I love the cute little singing veggies, I'm finding the more I watch the more annoying Bob and Larry's voices are becoming.
Anything for my little guy though!

Tomorrow my little Rainbow Rider will have his second ever sleep deprived EEG. He had his first when he was just 2 years and 9 months old (yes, I'm that mom who kept track of age by months lol). That was such an awful experience! He didn't understand what they were doing, he HATED having his hair touched, and he was really tired... combine all 3 of those and you'll get the massive meltdown that ensued while attempting to put the electrodes on his little head. Finally, he was restrained in one of those burrito type Velcro jackets, he fought for about 30 more minutes and then he was out! Sleep during the EEG was a success, and I was so thankful because for a few moments I was beginning to wonder if he would fall asleep.

For those who might not know, an EEG is short for electroencephalogram.  An EEG records electrical activity in the brain. The Neurologist reads the waves and can make a determination from the electrical activity as to whether or not a person is having seizures. Waves are recorded by placing electrodes to the scalp with this putty, pasty gunk.  Then they will dim the lights in the hopes that the patient will fall asleep. The best time to catch abnormal brain activity is when the brain is transitioning from awake to asleep.

So for my Rainbow Rider we have to stay up until midnight and then wake back up at 5am. I'm not typically a big coffee drinker, but I have a feeling tomorrow I will develop a new love for the magic mommy drink! Tonight though, we are busy celebrating our total awesomeness by staying up late, watching TV, coloring, and NO BED TIME ALLOWED!  (I've had to wake him up twice now lol, my sweet boy can't hang!)

Back to the EEG - My little guy is much older now, so I highly doubt he will have the same huge meltdown as he did before. One thing that makes me hopeful is his last MRI. It was obviously sedated because, after all, he is still a child. In his loopy frame of mind he was absolutely convinced the MRI machine transformed him into Frankenstein for just a little while until the machine shut off. He was such a good patient, laying completely still because he didn't want to mess up the doctor's experiment. 

Oh to live in his little mind for just a day! I bet it's AWESOME in there!

I'm sure he will do fine tomorrow
. He is very interested in science. I imagine the hardest part will be getting him to stop asking the EEG tech a million questions and try to fall asleep. Well, the time for sleep is upon us, and this Mom doesn't need to be told twice! Good night all! Cross your fingers for us tomorrow!!!

The Mom Behind The Finger 2/2

The last blog I wrote was some useful background information on me, my past, my experiences, before and during our journey on the Rainbow road. I shared bits of my childhood, the high school I graduated from, my career choices before mommy-hood, cancer, my husband, and some more. If you haven't checked it out yet I'd encourage you to take a peek. It may offer you a little more understanding as to who this  finger flipping Mom really is.

I left off with the rare, freak, and super rare non-cancerous cancer that took over my breast resulting in a radical mastectomy and the loss of my dream. I was released from the hospital a few days after my surgery. Miserable does not even come close to the way that I felt. I  have yet to find the perfect word to describe it, so if any of you out there know of any please let me know!
I was recovering, slowly but surely, a couple of weeks had come and gone. I don't remember much of it because I was in such a pain-medicine induced brain fog. I woke up one morning feeling especially tired, weak, sick... I don't know really but I knew I didn't feel "good". I called my mother, who had only been back to work for a couple of days and asked her if she could take me to the emergency room. I was strangely calm and gave no indication of just how sick I really was. She told me she'd be there after work and I sat on the couch... and waited.... for hours.... just sat there, no TV, no Facebook perusing, just sitting in silence. She arrived and took one look at me, she later described to me that my face was an odd hue of white and grey. I told her I couldn't leave yet because I needed to brush my teeth, but I didn't move. She stared at me for a few moments waiting for me to walk to the bathroom but when a few minutes passed and I was still sitting she threatened to call 911 if I didn't get in her car. Even in an altered frame of mind I knew I didn't want my co-workers to see me like that. I slowly walked to her car, she rushed me to the ER. When we arrived I walked myself in, I recognized the nurse who checked me in and completed my initial triage.
She was a volunteer Medic with the same county as I was. I was relieved to see her because I knew I wouldn't have to wait in the crowded waiting room for very long. She took my blood pressure and asked me in her ever-so-perfected Medic voice "YOU WALKED IN HERE? With a blood pressure like that?" I
slowly turned my gaze to the machine - 78/52

Things began moving fast, very fast, alarms dinging, doctor's and nurses rushing in, needles, blood, catheter, monitor, and defibrillator pads just in case. Had I been in my right frame of mind I would've recognized they were preparing for the worst, but it's probably best I didn't... I was crashing FAST!
While I was in the ER my fever spiked to over 104. The doctor's told me I had a freak infection that most antibiotics can't fight and it managed to enter my blood stream. I was in septic shock...

"Septic shock is very serious. According to the Mayo Clinic, some studies have found that the death rate for septic shock is almost 50 percent." ehow

 and then the rest of the memory goes completely blank.

The next thing I remember is being in the ICU, my mom and dad were beside the bed with the chaplain. They were crying. This confused me even more..."What is wrong with them? Hey, when did Dad get here? And who is this preacher who's holding my hand and praying over me?" ... the memory cuts out again...
The next thing I remember was waking up in the middle of the night, I only know that because there was nothing but darkness in the window and all of the rooms were dimly lit to allow patients to rest, except for mine. I was so tired, and just wanted to fall back asleep. A strange peace came over me. I began convincing myself that it would be so easy to just let go, just stop breathing. I was so exhausted I wasn't sure how much longer I could force the movement of air in my lungs.

Side note: When I was in college for my Medic I was taught the tell-tale, fool-proof sign that the Reaper is on his way. Impending doom- the feeling or belief that death is near, and when a patient says something to that effect you'd better prepare to fight back! People just know, they can feel that strange comfort the Reaper offers them in exchange for their life. 

I never truly understood how that could possibly be true, until I felt it that night. And it hit me - My body was trying to die on me! I wanted to scream for someone, anyone, everyone... but I couldn't find the energy to move my lips. Trapped in my own mind, unable to move, I prayed...I prayed hard... I bargained...I begged... I promised I would go back to church, I'd be a better Christian, a better mother. I kept repeating in my mind "please don't take me please don't take me please don't take me "
I felt myself beginning to fade into sleep again, I tried to fight it for the fear that I wouldn't wake up, but sleep was much stronger than I was at this point. Finally I surrendered to the peace being offered to me, I couldn't fight it anymore. In my final prayer before drifting off again, I asked God to protect my son, to always let him remember just how much I love him and how hard I tried to hold on...for him.

More alarms, louder, more frantic, I heard the sound of feet as they ran into my room and just like that, the  memory quickly fades.
The next time I opened my eyes I immediately wondered where I was. Did I make it? I frantically looked around and saw the familiar window, the monitor - only now there were no loud alarms. I knew then I was alive. I didn't know for certain how long I was out but when I saw sunlight beaming in through the window I knew God listened to my prayers, I was given more time. The sun never looked more beautiful than it did in that moment.
After some really awful procedures, an entire list of antibiotics I couldn't pronounce, and a few blood transfusions over the course of a couple of weeks, they let me go home. The first moment I saw my son after that horrible event I dropped to my knees, held him so tightly, and cried.
I was so close to never feeling his little arms again, so close to leaving him, the thought alone was enough to break me.
I became septic once more about a month later but that time I recognized the symptoms much sooner. I wasn't nearly as sick as before. I was still admitted but for a shorter time frame and I didn't require nearly as much treatment.
That night in the ICU room was probably the single most traumatic and life changing event I have ever been through. I was boldly dancing with death!
Not everyone survives such a horribly fatal infection. But I did, and I can't give the credit to anyone but God.

It took years before I confided the intimate details of my dance with death that night. And even now I feel the old familiar knot in my throat as I describe it. Just this past summer my Mom and I talked about what she experienced during that awful night. She told me when my father showed up they were chit chatting about nothing in particular, not aware of the severity of my condition. The doctor came out and told them the odds were against me,  he didn't think I would make it through the night. My mother said she felt the blood leave her face, she felt like she was about to collapse. The doctor told her if I could hold on through the night, I had a better chance of surviving, but he couldn't say for certain if I would. My father broke down in tears.
They felt helpless, hopeless, and completely out of control. They let her
and my father stay with me as much as they could but would rush them out when my vitals started going haywire. She said they didn't sleep that night. My parents stayed awake, crying, praying. Every time the ICU doors opened  they feared it would be the doctor coming to deliver some kind of unspeakable news. This intense panic filled them with every swing of the doors. How they managed this for 12 hours I'll never know.
My parent's waited, counting the minutes until dawn. With the first hint of sun peeking over the horizon my
mother grabbed the phone sitting in the waiting room. She called back to the ICU nurses station and asked for an update, they told her I was stable. She fell to the floor and surrendered to all of the emotion she was trying to choke back all night. She sobbed into her knees and my father was soon on the floor beside her, crying into his knees as well. The night was over, I survived it. The overwhelming fear they felt all night couldn't be contained anymore, the flood gate that held back every ounce of emotion finally opened and every drop came pouring out of them.

Until we finally took the time to have this long overdue conversation I didn't think anyone else knew how close to death I felt that night. It was truly a traumatic experience for all of us. Hearing her describe it choked me up. I couldn't imagine feeling so helpless while my child's life was on the line... My parent's were incredibly strong for braving the night with me... I guess the saying is true - You don't know how strong you truly are until strong is the only choice you have...

Now, post traumatic near death experience - the air tastes sweeter, the sun more beautiful, and  I was taught a lesson one can only learn from that intimate dance with death - everyday is a gift even more valuable than the last... a beautiful, amazing, unique gift which can only be given once. Tomorrow is not a promise - so live, live peacefully, live happily, but above all else just live.

I suppose this is where the seed of finger flipping was planted. I recognized an inner desire in myself, in my child, for the opportunity to live life, to enjoy it, to slow down, stop rushing, It was like a divine understanding was suddenly given to me, an understanding that things will happen in their own time, in their own way, according to God's plan which we can't know or begin to comprehend. So ladies and gentlemen, the notion, the idea behind "becoming normal" was tossed out of the window, my middle fingers raised high in the sky.
Screw normal! Give me exceptional, give me unimaginable, give me unique! I want a life that is phenomenal. I want a life for my son that is remarkable! Anything less is a waste of a priceless gift!

If you'd like to know more about desmoid tumors (also called aggressive fibromatosis) please check out The Desmoid Tumor Research Foundation.
For more information about sepsis please visit this informational site about septic shock.

Of course, this isn't all there is to my story, but I get bored with writing all about myself. Writing about rainbows is much more fun! I'm sure I'll tell more of my own experiences at some point in the future, but for now that's enough of me.... back to the rainbow road next time!

The Mom Behind The Bird 1/2

I've only been blogging for a cyber minute compared to other Mom's out there, but my posts focus on Rainbow Riding and all that it entails. I've learned A LOT on this road, and I have A LOT to say... but those who know me, know there's more to my life. Yes, we Autism Mom's have been molded into Rainbow Rock-stars, but that isn't all we are!
So who is the Mom behind this flippity bird?


I was born and raised in the state of lover's- Virginia. My parents separated when I was 4 years old. They both screwed up a lot over the years, and so did I. Once I realized that they, in fact, were human and mistakes were inevitable I was able to let go of past hurts and truly feel their undeniable love for me. I am incredibly close with both of my parents. It takes two very strong individuals to raise a wildflower like me...
Before I became a Mom I was a wild child (and in some ways I still am)! Everything I did, I did to the extreme. I was fearless. I was unprepared! I went to a small alternative school - you know the kind of school your Mom always warned you that you'd end up at if you didn't do well.... Yes, I was that kid. In fact, I graduated from there, as did my sister, my mother, and my father. A generation of rebels! I'm kidding, well no, I'm really not...
That small little school was the reason I graduated. It instilled in me a sense of loyalty, an appreciation for the family that doesn't share blood. Some of my favorite memories are because of this place. The school's very existence has changed the course of so many young lives it's unbelievable. So, no, I will never be ashamed to say I went to an alternative high school. In fact, I am damn proud to be a Point Option Pilot!


I met my Rainbow Rider's Dad not long after I graduated. We were young, living life on the wild side, he was in a band and I was a 19 year old girl with a love for old-school southern rock. Needless to say, I fell

 hard! We were too young and too interested in enjoying the moment to worry with building anything substantial. Things didn't work out between us, and that's pretty typical of a whirlwind party-hard kind of romance. What wasn't typical was the beautiful life we brought into the world. It didn't take long for us to realize we weren't going to work, but we did try... Besides, we make much better friends than we ever did partners. After we split up emotions were high, pain was intense, and we didn't know how to co-parent. It was really the moment our son was diagnosed that forced us to learn to work together. I can honestly say, he is a good Dad, and I am a good Mom, and even though we are apart, we make a good balance for our little man. Almost a decade has passed since we met, and I can easily see why he entered my life to begin with. There was a role that Life knew only he could play. I learned so much from my relationship with him, were it not for this time of my life I wouldn't be the wife I am today. Most importantly, we created the beautiful, colorful life of our Rainbow Rider.

We made a commitment to always have each other's backs, to never make a decision  concerning our son without the other, to communicate, and above all else - respect the roles we both play in our child's life... He nor I come before or above the other. Our son has benefited tremendously from the effort to parent separately yet together, in harmony with the other.

I worked as a Medic for a while before my new career as a stay-at-home Super-Mom. I learned SO MUCH and was a part of so many amazing things. If you ever want to see what "service" means - go to your local rescue squad and request to do a ride along. I am proud of the things I witnessed, the things I contributed to, the lives saved, the lives touched, and the co-workers who became extended family to me. My work in emergency services changed my life. To watch how easily life can slip right through your grasp, and to be a member of the kick-ass-team who made a career out of outsmarting the reaper, to experience this side of death vs life, it all gives one an entirely new appreciation for the very air we breathe!

I met my husband through my work as a Medic. We had a baby together, my youngest little boy, and he gave me the priceless opportunity to stay at home and raise both of my son's. It doesn't mean I don't miss my time in the back of an ambulance, sirens blazing, adrenalin rushing through my veins, saving a life, defeating death, OF COURSE I miss it! I loved that part of my life, but there's more to why I don't work as a Medic anymore than just being home with the kid's...truth be told, kids or no kids, I can't do it anymore.

Why? Well there's no simple answer for that. So here's the story. At 23, when my Rainbow Rider was just about to turn 3, I found out I had cancer. But, not cancer in the sense that most would define cancer. I had some freak "benign" tumor which behaved like cancer yet couldn't metastasize. Makes no sense right? I still don't get it. So even though this tumor could possibly kill me and even though the ONLY recommended treatments were a radical mastectomy and/or chemo for 12 months, I was still not "technically" a cancer patient. The CDC later re-classified this rare tumor 6 months after my mastectomy, just in time for me to not care what the medical classification was. Even though I was facing the loss of my breast, or my hair, or possibly both, or worse - my life, I would still get these ignorant comments from people who really thought they were offering encouragement
 "Well, thank God it's benign." What? Did these people really hear themselves? Way to downplay this rare and potentially deadly disease because you don't know what else to say...
Yes, Thank God it's a benign tumor that only 02.% of the population have ever gotten. Thank God I can't find a single doctor who has ever treated this before! And thank God I get to choose between a radical mastectomy with the possibility of chemo after or a 12 months of chemo with the possibility of a mastectomy after. Thank God for options!
It's like choosing whether you want to eat dog shit and then cow shit or if you want to eat the cow shit first. Either way you spin it, the situation still sucks!
So yes, I had a non cancerous cancer at the age of 23, I chose a radical mastectomy because at that point in my life I was a single mom and I really didn't have the time to be sick for an entire year from chemo. I refused to do chemo or radiation. In hindsight that was probably a really dumb choice on my part... But here's the part I can thank God for - The tumor was successfully removed and even though they have a 60% chance of recurrence. the bitch tumor has not come back. This July will make 4 years since my mastectomy. I lost my breast, my nipple, my skin, my pec muscle, and a portion of my abdominal muscles. The tumor cost me a lot, but the most painful by far was my career. With the loss of those major muscles, lifting a stretcher just isn't going to happen for me anymore. So this is the real truth for why I don't work as a Medic anymore... but it's easier to just tell people I get to stay home with my kids.

But you know even as I sit here tapping away on the keyboard I realize more and more the possibilities, the purpose of  certain things. Maybe I should have been thanking God throughout that dark time in my life. Without that experience I wouldn't be home with my sweet kids, able to raise them day in and day out, able to experience all of the moments. I think it may have been one way for God to slow me down, teach me to enjoy the ride on the rainbow. During this time of my life was when we really stopped trying to "recover" Autism and we began embracing it, all of it's quirky ways, all of it's uniqueness, it's magic, and it's beautiful array of colors!

If you'd like to know more about my journey with the non cancerous cancer and the bitch infection that tried to kill me.... stay tuned! I'll be blogging the next part of The Mom Behind The Bird 2/2 next!!!

The Gift

I read a blog the other night written by Jim Walter, the Father of a Rainbow Rider. It was a letter for his little girl on her graduation day. The post brought me to tears, not just because it was so incredibly beautiful...but also because every single word, every sentence, every paragraph was pulled straight from this man's heart - from his hopes, his dreams - and put on display for the entire world. Just think about it... one day she will have the opportunity to read this letter and  she will experience the unwavering, unconditional, and unbreakable love her father has had for her since before she could even remember. It's a beautiful thought.

I really don't want to seem like a copy-cat but I felt compelled to do the same for my son. So I hope this doesn't offend anyone but I am totally biting off of his idea here...Below you will find my letter to my Rainbow Rider, for him to read whenever he is ready, when he is able, when he can understand, and even before. Whether that is in 5 years, 10 years, or 20, or anywhere along the way. This is for him to read and re-read as many times as he needs to, maybe long after I'm gone, or before, whenever he needs a reminder. Finally, I encourage all of you reading this to take some time, write a letter for your child, your children, rainbow riders or not, children you already have or children you might possibly have in the future... You could even write one for yourself.
Imagine on the darkest of dark days, opening up an envelope or a new tab on your web browser and being reminded of the love, hope, and encouragement you've lost somewhere along the way. A simple reminder to bring it all back. Or for you kids to realize the indubitable love you've always felt for them, in a way they've never experienced before. I can't think of any greater gift.




My Sweet Boy,
Let me start by telling you, you are my light. My guide. You taught me what it was to truly live, to truly love. You continue to teach me so much every single day. No matter how cruel the world has been to you, you rise every morning ready to face it all over again. You are a perfect personification of courage. I love you, I'm proud of who you are, more than you could ever know, I'll always be here. You are everything to me and everything I am is because of you and your brother.
I know life has not been easy for you. Life has given you many challenges, ones which a heart like yours never deserved. I don't know why this is and I will never be able to understand it. If it were up to me, you would never know the pain and hardships you've endured. If I could have taken it off of your shoulders, I would have willingly and joyfully carried it for you. But, by the time you read this, I'm sure you know life doesn't work like that.
I wish, for even just a moment, you could see yourself through my eyes. You would see how incredibly proud I am of you. You would see the light that has been my guide for so long, that beautiful radiating light that shines from within you. If you could see yourself the way I see you, you would understand that there isn't a single word in any language that could accurately describe how remarkable you are.
Every milestone met, every goal accomplished, every boundary surpassed has been because you are relentless, because you are unstoppable. Never forget that you are always able!

There will always be people in this world who will try to make you feel like less than what you are. Don't let them. I have watched in awe as you completely annihilated limitations put on you by people who claimed to be experts. These experts obviously didn't know that you have the heart of a warrior. There are no walls that could ever hold you back. You have already surpassed their expectations, you did that within your first few years of life. Anything and everything you accomplish beyond that is nothing short of amazing! Don't ever stop! But also remember, that no matter what you dream of, or hope for, or pray for, no matter if it's big or small or anywhere in between - I believe in you! And I'll always have your back!
You were my gift! You are my gift every day of my life, forever!

I love you all the way around the world and back,
Your Mom