A DAY WITHOUT AUTISM...

I DREAM...
     I HOPE...
          I WISH...
              I PRAY...

A DAY WITHOUT AUTISM...
               JUST ONE SINGLE DAY...

I want my boy that was taken from me.
I want to hear his voice.
I  desperately want him to tell me everything.
What is his favorite color, what is his favorite food?
Does he like how we redid his room?
Why does he drop on his knees when he is angry?
Does he like his teachers, does he like the long bus ride?
What can I do to make things easier on him?
The list is endless....I could go on all day.

I want to play baseball with him.
I want to go to a Cubs game with him and him to love it, the way his dad and little brother and I love it! I want him to walk up those stairs at Wrigley and get that same incredible feeling when you look onto that field. I want him to have a day without allergies so he can experience hot dogs and cotton candy. I want a day without supplements and syringes. I want a day without screaming. A day without playing a detective and figuring out his every need.
All I want, is one single day....
                                       without Autism.

UPDATE!!

  
     In the Fall of 2013 we were at the highest of highs....David was learning how to ride his bike, he was being potty-trained, and he started to say new words! Unfortunately, that went downhill almost as quickly as it started.  If you read my last blog, you can get a feel for how intense things had become. For the majority of 2014, David screamed between 4-10 hours a day. It was a year full of heartache and tears. I can't describe how heart wrenching and helpless you feel when your child screams for that many hours every day and there is nothing you can do to stop it. David was unable to communicate to us what was wrong. We had no idea if he was in extreme pain or just angry. It came to a point where I really believed I would never see David smile again. At the time, it was too painful and raw to write about and share. This wasn't a day, or a week, or a month of screaming. This was almost a full year of hell. It was exhausting, stressful, and confusing. We thought we pinpointed the cause a million different times, but then the screaming always came back with a vengeance. I'm happy to say we are getting back on the right track.  He is smiling again and sometimes that's all you need. :)

    
    I'm also excited to announce my book "Doing it for David" will hopefully be released by the end of this year!! This eye-opening book will take you inside our family's journey with Autism. From the hardships and tears to the accomplishments and laughter.

     Check back periodically for the official release date and updates on David and our family!

THE ROLLERCOASTER RIDE OF AUTISM

 

I'm awakened by his ear piercing screaming....

 

I enter his room and brace myself

  as he charges me full force.

The anger in his eyes meet mine.

He aggressively grabs my arm.

He releases his grip and runs back to the window.

 

This continues for hours....

 

I'm filled with

sadness,anger,and frustration.

I sit there utterly empty and drained.

 

I text my husband in tears.

Searching for answers....

I feel so helpless and confused.

 

I just want the screaming to STOP!

 

The tears finally dry up and I become numb.

It's the only way to deal with the pain.

I pray for the strength to get through this day.

I already feel like I have nothing left to give.

 

David walks towards the couch.

I sit in anticipation,fearful of what will happen next.

 

David smiles that big angelic smile and kisses me

 

My body relaxes

My heart is filled

My boy is back!

 

IN THAT ONE SIMPLE MOMENT

EVERYTHING CHANGED....

Autism Awareness Day......In Memory of Nick

                                                               



My friend, Melany, and I would often talk about Autism. Her brother Nick was diagnosed with Autism at the age of 3. He unfortunately left this world too quickly at the young age of 21.

Nick loved swimming, baseball, pinball, and trains. "He had a smile that could melt your heart and had the most infectious laugh."

"Most of all I miss having you spend time with me and my boys. You loved my boys and they loved you right back. You were so sweet with them. We miss you, big guy, and love you always." Your big sister, Melany

Nick's mom has started a blog in memory of her son and also to connect with other parents who are grieving the loss of a child
www.nickisinourhearts.com

Please keep this family in your thoughts and prayers during this difficult time.

Autism Awareness Day is coming up soon on Wednesday April 2nd. Please support Autism Awareness by wearing blue. For more information and ideas of what you can do please visit www.liub.autismspeaks.org
 
 

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!!  :)