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Posts Tagged ‘Light it Up Blue’

Dear Mrs. Obama,

As one mother to another I would like to ask you a huge favor…could you please change your porch light to blue for this Friday and Saturday night?  You see, this Saturday is World Autism Awareness Day and all over the world people and institutions will be shining a light on Autism by finding ways to “Light it Up Blue.”  My family will be stringing blue LED lights onto our condo balcony, but I have to be honest, your home is much more visible to the world audience.  Your help and support would be so appreciated.

My son Jem is seven years old, just a little younger than your girls.  He is a bright little boy who still believes in Santa Claus and the Easter Bunny.  He loves LEGOs and anything to do with space or robots.  He is just one of the world’s children who is living with Autism.  He is my hero.  I would never ask you for myself, but I will ask you for my son and for all of the children who are affected with Autism, could you please send a message to the world by lighting your porch blue for two nights?

You can’t imagine what it would mean to the children.  Thank you in advance, Mrs. Obama for understanding the importance of this small gesture.

Sincerely,

Shannon Penrod
Jem Miller’s Mother

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My son was diagnosed with Autism 5 years ago.  At that time I tried to wrap my head around the fact that my life was going to be significantly different from how I had imagined it.  Instead of taking day trips to the zoo, learning how to ride a tricycle, or registering for T-ball my son and I were going to learning the ins and outs of intensive ABA therapy.  I attempted to accept it with grace; if it was what my son needed we were going to do it.   What I didn’t know, what I hadn’t counted on was that helping my son was only going to be half of my job.  The other half was to educate the world around him about Autism.  For me, this was harder, crueller than I could ever have imagined.

I remember in the early days of our Autism journey, standing in line with my son at the bank, or attempting to.  The man in front of me was not happy with me or my child.  My child was moaning, attempting to escape and intermittently rolling on the floor when I could no longer restrain him.  The longer the wait, the worse the behavior, and I was worn out.  The man kept turning around and giving me dirty looks.  I wanted to cry… for all of us.

It’s not easy to listen to a child moan for twenty minutes while standing in line.  I know this all too well.  But I knew that in 20 minutes the man would be able to walk away.  I wouldn’t be walking away and I needed him to at least understand.  So…I picked my son up off the floor for the 100th time and began to talk loudly to him.  I told him what a good job we was doing.  The man in front of me hrumphed with derision.  I continued, I loudly told my son how difficult it is to stand in line, how frustrating it is, that I too would like to cry and lay on the floor.  I told my son that it was hard for adults so I couldn’t imagine how hard is must be for a little boy with Autism.  I told him that I knew he was just trying to make sense of a world around him that was full of too many colors, too many noises; a foreign world where he couldn’t speak the language or understand it.  I told him I knew that he was scared, but that mommy would never leave him; that I would always be patient, even when it was hard because that’s what he deserved.  I watched as the man’s shoulders changed shape in front of me.  Eventually he turned and looked at me offering a silent sheepish apology with his eyes.

I cried the whole way home that day because I knew it wouldn’t be the only time a stranger would look at my son and make a judgement based on ignorance.  I thought about how hard my child was going to have to work in order to do things that most of us take for granted, like being be able to look at someone and say, “Hello.” And the kicker?  If he worked tirelessly to accomplish this, for him, heroic deed his reward would a simple, “Hello.” back.  The respondent would have no idea how hard-won the exchange had been.

Five years later, I continue to be shocked by what the world does not know about Autism.  People tend to have an image in their heads of what they think Autism is and they tend to apply that to anyone who has Autism.  Unfortunately, this is tragically inappropriate.  Autism presents differently in everyone it affects.  There are some children who can’t bear to be touched, others who need frequent touches in order to stay calm and focused.  Shockingly there are still some people who think Autism is not real and simply a function of bad parenting.  Ignorance is bliss apparently, but it can’t last long.  As more and more children are diagnosed in epidemic proportions it is only a matter of time before such ignorance is faced with the stark reality of truth.  If Autism does not currently touch your life, it will soon.  Statistics promise it.  I wish it weren’t true.  Everyday I pray that brilliant unbiased minds continue to search for all of the potential causes.  While they do that I continue to plod along doing my job, trying to make a world where my son and children like him are seen for the true heroes they are.

World Autism Awareness Day is April 2nd this year.  On that day I hope you will participate.

Things you can do to raise Autism awareness on April 2nd:

Wear blue all day

Changing your porch lights to blue for the evenings of April 1 and 2

Make your FaceBook Profile picture blue!

Donate to Autism Speaks or ACT Today!(They currently have an initiative to help children with Autism whose parents serve in the military)

Show compassion when you see children and adults with behavioral issues.

Visit Autism Votes to find out how you can urge your representatives to further insurance reform so Autism treatments will be covered in every state.

Urge the school administrators in your area to participate in Skills for America to receive grants to help educate children with Autism.

Ask questions…there may not be an answer, but if we keep asking the questions the answers will come.

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by Shannon Penrod

Friday is World Autism Day.  In honor of the day Autism Speaks has asked us all to “Light it up Blue”.  The “it” to be lit blue is up to each and every one of us.  The Empire State Building will be blue, Kingdom Tower in Saudi Arabia will be blue and my porch light will be blue.  It’s subtle, but the idea is pure.  This is something that affects all of us.

If Autism isn’t affecting you now, it is my sad job to tell you that it will soon. Whether it is your child or the child who sits next to your child, your friend’s grandchild or your bosses child, someone in your life is or will be dealing with Autism soon.  The statistics are staggering.  Conservative estimates have us at 1 in 100 children worldwide, 1 out every 70 boys.  Before you excuse these numbers with theories of misdiagnosis or bad parenting consider for a moment the disservice you do these courageous children who are fighting daily just to be a part of our world. 

Autism is real.  It’s not going away.  But there is help and there is hope.  This Friday please put your cynicism aside and offer the children and families that are on the front lines of Autism your support.  Find something to light up blue, whether it means wearing a blue shirt or sending all your emails in blue type, make the effort.  Because as Dr. Suess once said, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”

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