CHRISTMAS BLESSINGS

      The stress associated with having a child with Autism during the holidays can be overwhelming and challenging. If you factor in the sensory issues, allergies, potty training, and the hyperactivity...the holidays end up not being that enjoyable and they turn into something you just try to get through.
     Although this year we will still face many challenges....we have many Christmas blessings to be thankful for!!  David is potty trained!!! After 7 years, this is the first Christmas I do not need to bring diapers and wipes. Just this accomplishment in itself makes the holidays brighter!
      This past week at school, David was passing his gifts out to his teachers as he said... HO, HO, HO!! It just brings a smile to my face knowing David has words!  This is the first Christmas in 7 years that David can say, "I love you, Mama"!!!
      This morning, David came in our room and laid next to me and cuddled.  He grabbed my arm to wrap around him. I hugged him so tight and did not want to let go. Tears welled in my eyes, realizing what a precious moment this was. These moments are amazing and I am super grateful that we have so many Christmas Blessing to be thankful for this year!!  Merry Christmas!!

Please let me be human....

I was looking through some old journals I had written and although this is hard to share, I think it is important to share at the same time. When you have a child with Autism...their are many struggles you will deal with and when you experience sleep deprivation things really seem to complicate your mind.....I am grateful that things are much better now....but they were not always this way

How many hours a day am I supposed to listen to him scream and be OK with it?
When am I allowed to break down and be human?
4 hours, 6 hours, please let me know, because sometimes I feel like I'm supposed to be this superhuman
I need to make sure all the supplements are ordered, that he gets each one at the right time each day
I need to make sure gluten, casein, soy, and corn never touch his lips, not even his hands
I need to make sure he's happy
I need to make sure he's not wet
I need to make sure he is engaged in educational activities
All at the same time I'm trying to meet the needs of his brother, running a household, keeping my marriage intact

When am I allowed to be something other than an Autism mom?

When do I get to sleep through the night and not listen to him scream for hours on end?
When do I not have to be hurt by my 6 year old or watch him harm himself or his brother?
When am I allowed to break down and not be looked at as weak?

When do I get to think about myself?
Just a little bit...
>
When will I not be judged so harshly when I lose my cool and yell at my son?
Remember I am human and running on 3 hours of sleep after listening to my son scream for over 6 hours, while he hurts himself and won't let me help him
How do I just listen and not help him? I want to help him, but he keeps pushing me away...do you know how awful that feels...especially because I have no idea what's wrong...he can't tell me...he doesn't have words yet.....I wish he had words....I wish he had words

Please tell me this gets easier....I don't want to watch my son in pain anymore
Please stop looking and staring....you have no idea what we have been through or where we are going

His scream pierces through every inch of my body

Please let me be human......

I LOVE YOU!!

Earlier this year I wrote ......I pray every day for acceptance, love, and understanding for those affected by Autism. I pray for the day my son will utter the words, "I Love You"!!  Who knew, I would hear these words so soon!! I have been trying to capture this on video for a few weeks now, but David does not like the light from the camera in his eyes. Who would? We also pushed him a little too far at the end....but it's so hard not to. We get so excited every time he speaks.  It's something you can't quite put into words. I hope you enjoy this as much as we do!!  :)

ABSOLUTELY AMAZING!!!

JUST A FEW MONTHS AGO, DAVID WAS CONTENT TO JUST SIT IN THE MIDDLE OF THE ROAD ON HIS BIKE. TO GET HIM TO ACTUALLY PEDAL, YOU HAD TO PUSH ON HIS RIGHT THIGH, AND THEN HIS LEFT THIGH , AND THEN HIS RIGHT THIGH AGAIN. IT WAS EXHAUSTING AND NOT VERY MUCH FUN. SO I'M SURE YOU CAN APPRECIATE THE MAGNITUDE OF THIS VIDEO AND HOW ECSTATIC WE WERE TO WITNESS THIS!!!  ENJOY!!!   :)

Just Believe

      Just a few short months ago, I was at the end of my ropes. My husband and I were fighting to get David into a more appropriate school that met his needs. We were functioning on 6 years of limited sleep, I was emotionally and physically drained.  Most weeks David only slept 2 or 3 nights a week at best.  We had many nights of 2 hours of sleep, if we were lucky we had four. He would scream bloody murder and bang into his closet and doors. He would poop smear, he would hurt himself, nothing was off limits. Some nights I would go to bed at 11 p.m. and he would wake up at 12.  Those nights were the worst!! I would already put in an 8 hour day  before he went off to school. Then I had his little brother to take care of. Nothing like trying to take care of a four year old after getting 1 hour of sleep and watching your 7 year old physically injure himself and you for the past 8 hours.  On top of that you had to clean  poop off his carpet and walls.
      Wow, have things changed!!!  We enrolled David in Brain Balance, which by far, is the best decision we have ever made! The results are beyond phenomenal!! Not only is he saying new words every day, but he is SLEEPING!!!! David is also attending a year round school for children with Autism. So combining this with Brain Balance has been the most wonderful experience we could have hoped for. Just yesterday we received a note from school saying he said 5 new words. Are you kidding me? This is a child who only spoke 4 words in the last 5 years. Am I dreaming? I still say the most heart wrenching phrase he said was "Ni Ni Dada"!! We have been waiting for these moments for so long and they are part of our reality now. David is being potty trained now and doing just awesome!! After 7 years of buying diapers and pull-ups, I can't express how great it feels to buy him underwear and not being in public being embarrassed because his pull-up is showing. He can ride his bike now (with training wheels) but he could not do this before. He would maybe pedal once and then just sit there. He now rides around the cul-de-sac with all the other kids. I can't explain how great that feels to see your son who rarely interacted before to be riding around with the other kids.
      I'm so thankful for finding Brain Balance and fighting to get my son into the best school possible. I really urge any parent of a child with Autism to look into Brain Balance. It's like getting speech, OT, auditory processing, and visual strengthening therapy all in one session. It is the most comprehensive program I have ever encountered. I believe again!! My son is progressing daily. There were times when people wouldn't see him for a year and besides being taller, their was no cognitive change. Now, if you haven't seen him in  a month, Holy Cow, you will be seeing a completely different child. Honestly, I can't believe how great things have been. Thank you to everyone who has donated to our fundraiser. You truly changed our family forever! We appreciate every donation so much. Our lives are forever changed because of you!
    If you are interested in learning more about Brain Balance please visit their website at www.brainbalancecenters.com or watch Brain Balance testimonials on youtube....you will be amazed!!  If you are interested in checking out our fundraising page...you can visit that at www.gofundme.com/3740sk

Please keep on believing....anything is possible!!!

Doing it for David

     When you hear the life altering news that your child is diagnosed with Autism, something changes inside you forever. You become this warrior, this fighter, this person you never thought you could be. You get this fire inside you to fight for your child that will take you places you never thought you would go. You have this sense of what is right or wrong for your child. You will know instantly if a teacher, school, therapist, situation, will or will not work for your child. It takes awhile to realize how much you sense this, until it happens time and time again. I didn't realize how strong this was for me until my son was having horrible GI issues and my pediatrician and GI doctor kept assuring me nothing was wrong. I did not have a medical degree, but I knew something was wrong. I begged the pediatrician to order an X-RAY for probably the 3rd time in a week and finally she caved. An hour after the X-RAY they called and told us to head to the ER immediately and pack an overnight bag. This is the moment I learned to follow my mommy gut and to never question when I felt something so strongly about my son.
    This is how I felt about the program Brain Balance. I attended a presentation by the executive director of Brain Balance and I knew this was something that would benefit David like no other program had. David had done other programs before, but I never felt so passionate about the possibility that this program was right for David. This program focuses on the imbalances in the brain. When I first heard the lecture almost 4 years ago, they were not accepting children who were nonverbal, but now they have adapted their program for kids like David. I was beyond ecstatic when I heard the news.  Unfortunately, the program is expensive, just like every other Autism treatment. With David's restricted diet which is extremely expensive, his supplements, and spending $7 for a tube of toothpaste because of his allergies, we felt stuck. Our sister-in-law suggested we do a fundraiser in hopes we could find a way to make our dreams come true. Most importantly, David's dreams come true. I've watched hundreds of testimonials of parents who sent their children to this program and I tear up every time, hoping one day I can be that mom telling others how Brain Balance changed our lives. If you are interested in helping us out, the fundraising website is http://www.gofundme.com/3740sk  We appreciate and thank everybody who can contribute. We are Doing it for David.....

 

I Cried for you today.....

I cried for you today.....
     unable to tell me what was wrong
        stomping your feet
           screaming as loud as you can
Yet....
     you are left with no words....only PAIN
        I see the frustration and anger in your eyes
          and then.....

I cried for me.....
     spending 5 years as a detective
        holding on to every sound you make
           believing one day you will speak to me

The neverending frustration of figuring out
     your every want and need
        I feel so helpless
            and then.....

I cried for your brother....
     who desperately wants to play with you
        who tries to be such a great brother
           who is so proud of all your accomplishments
He tells me he hopes your first word is OIL CHANGE
     I begin to laugh
         and then.....

I cried for your dad.....
     who had so many hopes and dreams of you playing sports
        family vacations, dating, and getting married..
           and then.....

I cried for our whole family.....
     who has been to hell and back with
        doctors, seizures, supplements, sleepless nights, and allergies

But then I stop crying.....
    I start believing and hoping and fighting.....
      I start remembering.....

      The first time David said Mom
           when he waved for the first time
                when he slept through the night for 3 nights in a row
                      when I hugged him and he hugged me back
                            the list goes on and it will continue to grow....

I realized...it's OK to break down and cry
     as long as you get back up
         and keep on believing
              and keep on laughing
                  and keep on appreciating the small things.....

ALONE

     Things were progressively getting worse with David and I was concerned because my husband and I were not seeing eye to eye on the whole Autism matter. He kept telling me I was overreacting.....now I understand he was hoping that I was and probably just as scared as I was. This was hard for me because I needed him to be on board so we could get help for our son and so we could be there for each other as an emotional support. We went to David's 2 year checkup and I was praying the doctor would mention Autism, so I didn't feel like I was making this all up in my own head. Unfortunately, nothing was said and I was just astounded...how am I the only one who sees that something is wrong? I mentioned it to a few close friends and everyone said they thought David was fine. I'm sure they didn't know what to say, but it just made me feel very ALONE. I remember sneaking into the basement to research Autism, watch Autism videos, and take Autism tests to see if  David had Autism. I even went to the library and got books and would hide them in the house, so my husband wouldn't find them. By the way, I became pregnant with our second child right at the beginning of David's regression, so my emotions were heightened to begin with. So, back to David's 2 year checkup. I'm very disappointed and confused and then the phone rings. It's our pediatrician. She said she was reviewing  David's chart and the information we filled out and she is concerned. She thinks we should have David tested for Autism. You would think in that moment I would be relieved, someone finally saw what I saw, but instead I broke down crying. That is the first time I heard someone else say Autism and David's name in the same sentence. It was the most horrible feeling. I felt like I just lost a battle. I felt like I lost my son.
     Next, was the beginning of many evaluations over the course of the next few years. The first one was probably the most intense and hardest for me. I'll save that story for next time........
    

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.......