Friday, April 20, 2012

Do you see what I see?


I don't always know...what you see, hear, or feel....
I may never really know.

For all that you do say,
There is more that you don't.

I believe in all that you do,
And worry endlessly about all the rest.

My heart aches for you,
My love heals you.

Patience is key,
Yet, I don't always have it.

I forget about Autism sometimes,
I just expect more....but it's always there.

I see:
Your head in the clouds.
Your head above water.
Vison in your eyes.
Strength.
Determination.
Purpose.
Love.
A confused mind.
A scar on your head...from where you tested the limits at school...and lost.
A handsome, perfect, and beautiful child.

I don't always know how to help you...
But will forever love you and try my hardest to help you meet your potential.

Dream Big Darren.
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Darren On YouTube!



His school participated in a Flash Mob! Darren is front and center...Literally! He is in the front row wearing a dark blue shirt. 

I watch this and I cry. I am so proud of him for participating. Yes, his teacher is holding his hand and helping him. BUT he is standing there (not running away, not fighting the process) and he is present....and in the moment. THAT is what I am most proud of.





Sunday, April 1, 2012

AUTISM

Here we go again! Tomorrow is National Autism Awareness Day. Please light up the world... BLUE.  Yes, the latest studies show that 1 in 88 children have Autism
Autism Speaks reports:

Today the Centers for Disease Control and Prevention (CDC) updated its estimate of autism prevalence in the United States to 1 in 88 children (1 in 54 boys and 1 in 252 girls). By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.*
The new numbers - based on a 2008 snapshot of 14 monitoring sites - represent a 78 percent increase in autism over the previous five years. They represent a ten-fold (1,000 percent) increase in reported prevalence over the last four decades.
“The CDC’s new estimate of autism prevalence demands that we recognize autism as a public health emergency warranting immediate attention,” says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “More than ever, these numbers compel us to redouble our investment in the research that can reveal causes, validate effective treatments and guide the effective delivery of services to all our communities,” 
“The CDC numbers are alarming, yet they don’t begin to tell the story of the real families, real individuals struggling every day,” adds Autism Speaks President Mark Roithmayr. “From fighting to get a diagnosis and secure appropriate educational services and therapies, to trying to manage tremendous financial and emotional burdens or find a satisfying job opportunity, families are engaged in a daily battle against this disorder. We need to marshal the same resources and attention that the government has devoted to other diseases and disorders and finally make this a fair fight.”
This is alarming....because we live it...and wouldn't wish this life on anyone.
Autism is no joke. It is life changing...and I am just speaking for myself!!!! I can't imagine how it effects Darren every day of his life. I can't imagine how frustrated he must get. I can't imagine what goes on in his beautiful brain....I try...but everyday, I never really know.
Yesterday, I hated Autism. As I was cleaning up downstairs, Trevor was at the neighbors, and Darren was upstairs playing quietly...SO I THOUGHT. I went upstairs to check on him. Darren decided to have a pee fest. He enjoys peeing on the mirror closet doors and watching the it run down. LOVELY. It is not the first time he has entertained himself this way...but yesterday...it made me cry. As I cleaned up my son's pee, I thought "why". I put him in his room and left him there for a bit. I was sad and upset. He came out of his room and found me downstairs and gave me a hug and a kiss and said "I'm sorry Mommy". It was genuine and unprompted. Again, I wanted to cry. I have been so annoyed by some of Darren's actions lately. Increased noises, silliness, the hitting of my arm repeatedly, and then the peeing just put it over the edge. But last night I realized that it was MY attitude that was the problem. I am the one that needed to get my act together...I am his mother, his teacher, his everything....So today I started anew. 
Today, when he was silly...I asked "Are you trying to make us laugh" He surprisingly answered "Yes". I have been so intense with work lately...maybe he is trying to make me happy
The noises have always been struggle for me.   I want so much for him to use his words more effectively. But today, I sometimes copied his sounds. I spoke to him like I knew exactly what he was saying..by just looking him in the eyes and saying "ok Darren, I hear you". 
There is no manual for Autism and even if there were, I am not sure a Chapter would fit Darren's profile.
Autism to me, means hope and heartache. Heartache in the fact you see a beautiful child that can't do all of the things that you dreamed of when you planned for a family...Hope because you the opportunity to witness true miracles. It is in the gray that you find grace and healing.
I am thankful for my gift. I continually pray for strength and vision.  
After a tough loss yesterday on the baseball field...and after dealing with the whole peeing incident I looked at Trevor and said "Never take for granted your gifts. YOU have many God given talents, don't waste them...not one second of one day." He got it. He knows. Darren is part of Trevor and vice versa,
So spread the word. Autism is an epidemic. If ever there is any opportunity to support National Awareness or even just extend kindness to a stranger with whom you can tell needs support...Please do so...Make a Difference.
Thanks to everyone that has supported us. We are so grateful for your love and acceptance.