LIGHT IT UP BLUE...

    
     I pray everyday for acceptance, love, and understanding, for those affected by Autism. I pray for the day my son will utter the words, "I love you"! I will never give up hope, I will never stop trying, and I will forever treasure the first 18 months of his life before we entered this crazy world called Autism.

     April is Autism Awareness month. Please join us and celebrate Autism Awareness Day on Tuesday April 2nd by "Lighting It Up Blue". All that means is heading to your local Home Depot to buy blue light bulbs and replace your outdoor light bulbs with these. Just ask an associate for the blue Autism Speaks light bulb, they will know what you mean. They only cost $1.99 each and $1 from each sale goes directly to Autism Speaks.  Turn them on this Tuesday and leave them up all month. If your like us, we leave them up all year!!  :)  Another thing you can do to support Autism Awareness is to wear blue. It's that simple, but it truly will affect many people. As an Autism mom every time last year I saw someone on this day wearing blue or turning on their outside blue light, it touched me in a way that I can't put into words. Visit lightitupblue.org and check out their photo gallery. They have pictures of buildings and landmarks across the world that are participating. It's truly amazing!! With Autism rates rising and the new statistics stating that 1 in 50 children have some degree of Autism. If the numbers keep rising like they have over the past few years.....next year it will be 1 in 20 children, and in 2 years it will be EVERY child. Just something to think about... Everyone who deals with Autism on a daily basis thanks you! Please raise awareness and "Light It Up Blue".......

My first encounter with Autism...

     As David started regressing, all I kept coming back to was:  Autism...Autism....Autism.  Of course, I didn't want this to be the case for our son, but I couldn't get it out of my head. I kept thinking about when I worked in a preschool 10 years prior and their was a boy, Jeffrey, who had Autism.
     This boy was always very special to me. He was only at the preschool for a couple of months, but he had a profound effect on me. Besides, Rain Man, I never actually met anyone living with Autism. It was over 10 years ago, so Autism was still rare.
     I was young, maybe 20 at the time, so I wasn't stressed out that Jeffrey didn't talk to me or look me in the eye, I found it absolutely fascinating. I remember during nap time he would recite books out loud, word for word and he was only 3 or 4. He actually had memorized them, but it was amazing! I would look forward to seeing him on the playground, since he wasn't in my class, this was pretty much the only time I got to spend with him. I was just so intrigued and did everything I could to interact with him. Most of my attempts failed...but I kept trying. When I found out Jeffrey's mother was pulling him out of the preschool, I was very upset. However, it only challenged me to get through to him quicker.
     It was Jeffrey's last day and we were on the playground. I was making one last attempt to connect with him. I remember it so vividly. We were in the middle of the playground and I was talking to him about this being his last day and how I was going to miss him. He looked straight at me and said, "I love you, Miss Bell." I almost dropped to my knees. I was smiling ear to ear. Jeffrey spoke, but never directly to anybody. I never felt so connected to anyone before.
     I never forgot Jeffrey and still wonder how he is doing today. I actually applied for two Autism teaching positions because of him. I always felt like it was my destiny to work with children who had Autism....not exactly thinking it would be my own son. Working with Jeffrey and raising a son with Autism are two totally different entities, but I'll get into that another time. Until next time...
    

   

This is so Awesome!!!

    Most of us take for granted the simple act of waving...we don't think about it twice. For David, he just didn't understand the concept. I had waved feverishly at him as the bus pulled away for 3 1/2 years, hoping and praying each day, that this would be the day my son would wave back. Well, this day has come. I got David on the bus and I waved probably for the thousandth time and it happened...he looked straight at me and waved back!!!! I was in complete shock, tears welled up in my eyes. I was smiling and crying at the same time and I gave David the biggest hug ever, I probably hurt him squeezing him so hard. It was something I waited for so patiently and for so long, that when it finally happened, I couldn't believe it! That moment was truly precious. I took this video about a week later. Just remember to appreciate the little things...sometimes those are the moments that matter the most!!  :)

Where it all began...

This is really difficult for me to write about, it was a very lonely and sad time for me. Life as I knew it would take a change for the worse and I didn't know how to handle it. My sweet, talkative, happy, little boy would be taken away from us and become lost in his own world in the blink of an eye. I didn't know how to make sense of it all. I never saw it coming, so I had no way to prepare for it. Until David was 18 months old, he was a healthy and happy boy and soon he would lose almost all his speech, his ability to interact, and the worst of all and most hearbreaking for me, was he lost his smile. For me as a mom, this was almost too hard to deal with. The times we once spent together laughing and playing would never be the same again. Instead of sharing these incredible moments together, they became a struggle. There were no more laughter and smiles, it was tears and tantrums. I couldn't bear anymore to have people look at him the way they did. I hated the looks I got from other mothers. One day I couldn't handle it any longer and became completely isolated from people. That way no once could look at me with those disapproving stares or look at my son like he was a creature from outer space. I had to protect myself and my son from the pain that society was placing upon us. I soon became an expert on what parks would be empty and at what times. If I pulled up and their was 1 person there, I would pull out of the parking lot and head to the next one. That way if he had a complete meltdown, no one was there to judge me and my son. I stopped hanging out with family and friends who had kids around the same age as David. It was almost unbearable to watch their children act "normal" and have the skills they had compared to my son. I just didn't understand what happened...his physical body was there but everything inside was gone. He had a blank look on his face and didn't even understand the concept of playing anymore. He would just run around doing nothing at all. He stopped pointing, stopped looking at me in the eye, he wouldn't respond to his name, and he threw these unbelievably long tantrums all the time. He had a sadness in his eyes that broke my heart. Sadly out of the 19 words he spoke at 18 months, I have only heard 4 of those words a handful of times in the past 5 years. If that isn't heartbreaking enough, we had many new issues that we were about to face over the next couple of years. This was only the beginning...

 

 

 

 

This is my little man, David. He's taught me more about life than I ever thought possible. He has taught me patience, compassion, and how to communicate without words. David has taught me to follow my mommy gut and that doctor's are not always right. His challenges have made me stronger than I ever thought I could be. Thanks to him I'm a better person. I love you, David!

Autism Every Day - 7 minute version.flv

When David stopped talking and interacting...my gut feeling was Autism. This is the video I kept coming back to. I watched it over and over again. I felt like I was watching my son on the screen. This video confirmed my biggest fear...my son had Autism. I knew our lives would never be the same...but at the time I had no clue how hard it really was going to be...

Autism....
   Unfortunately almost everyone knows someone with Autism...a friend, a neighbor, a relative, or even your own son. At the beginning I couldn't even say the word....I called it the A word. It was heartbreaking and devastating and turned our family's life upside-down. Here we are 5 years later....and I am finally ready to share our story.

When Autism enters your life it's like being swept up in a tornado....everything changes at once.  You learn more about yourself, your husband, friends, and family than you ever thought possible. Relationships are tested and you learn who you really are as a person, even if sometimes that's not the person you intended to be. Your life is forever changed. It's how you deal with the daily challenges that will test your character. Some days are better than others and some days you wish you could erase from your memory. There are so many struggles and challenges you will face along the way, and they will change throughout your life.
 
Autism is complicated...it's not just about a child flapping his hands or having a tantrum in the middle of a grocery store. For us it included:sleepless nights, GI issues, food allergies, supplements, seizures, IEP's, countless therapists, communication deficits, financial issues, potty training difficulties, MRI's, EEG's, constant blood work, x-rays, emergency room visits, urine tests, stool tests, and poop smearing. You can only imagine what kind of stress this can put on a marriage and a family.

 

 

 

This is OUR JOURNEY...and believe me every Autism journey is different. We were fortunate that Autism didn't enter our lives until David was 18 months old. We WERE able to experience him talking and interacting. We cherish those memories close to our hearts and hope and pray we can experience them again. Recovery IS possible and that is our dream for our son and our family. Let the journey begin.......