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Archive for March, 2011

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

My cardiologist asked me to start playing the Didgeridoo the other day.  Apparently playing the Didgeridoo helps with sleep apnea.  No, I am not kidding and you have not just stepped into the Twilight Zone.  First let’s start with the basics – Didgeriwho?  Didgeridoo!  The Didgeridoo is an ancient Aboriginal musical instrument some even believe it to be the oldest musical instrument.  It is a long tube, that is slightly crooked.  When you blow a raspberry into it a sound emerges that is somewhere between a twang and buzz, with a little bit of a fart noise mixed in.  It sounds bad but it actually is kind of funky.  Check out Crystal Bowersox singing the Beatles, “Come Together”  with…a Didgeridoo.

It turns out that playing this ancient instrument 3 times a day for fifteen minutes each time promotes circular breathing which has a measurable effect in preventing snoring.  The University of Zurich first did a study that was published in the British Medical Journal detailing their study of 25 patients with moderate to severe sleep apnea.  Half of them were given Didgeridoo lessons and the other half just got put on waiting list and miraculously the Didgeridoo learners showed significant improvement in their sleep apnea scores.

Faced with doing a sleep study and having to be hooked to an expensive c-pap machine every night I decided to give the Didgeridoo a try.  It was certainly more fun to pick out than a c-pap machine, I can tell you that.  It came in the mail yesterday and I couldn’t wait to get it out of the box.  It’s beautiful, but harder to do than it looks.  I got one with a rubber mouthpiece and I’m still trying to get passed the fact that it tastes and smells like I’m kissing a tire.  And as for the circular breathing thing…not as easy as it sounds either.  There are exercises to help you work up to it.  I keep telling my noise to breath in while my mouth is blowing out but so far my noise keeps saying, “I don’t think so.”  Rome was not built in a day.

I plan to keep practicing. I figure my best case scenario is that my snoring will improve and my husband and I will get better rest.  My worst case scenario I have a really cool conversation piece that sits in the corner and waits for guest to oooh and ahhh over it.

 

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By Shannon Penrod

I have a seven year old who is recovering from Autism.  “Recovering from Autism”  this is the phrase that my husband and I adopted about nine months into our journey through Autism.  I didn’t want to call him “autistic”, it sounded final, it sounded harsh, it didn’t honor his spirit.  Like a lot of families we chose to say that “he has autism.”  It’s the truth and it pays homage to the fact that there is more to this little boy than just this one thing.  It was better, but it wasn’t enough.  I love words and I whole heartedly believe in the power of them.  I believe what you think becomes what you say, which becomes what you do and together they comprise how you experience the world.  I wanted to say something that would help our entire family to experience our journey through Autism with dignity and hope, so we began to say that Jem was recovering or actively recovering from Autism.  And yes, the decision to capitalize the “A” is a choice too.  If you live with this in your home you know that it warrants a capital “A”.

Okay, I know I will get mail from adults with Asperger’s and High Functioning Autism who will tell me that Autism is not something you need to recover from.  They like who they are and how they are.  They are offended that there is even talk about needing to recover from Autism. What’s to recover from? Hear me when I say – That is not the Autism I am referring to.  If you can read a blog, get offended by it, and feel the need to respond to it, then you aren’t being held back by Autism.  Unfortunately that isn’t everyone’s story.   My entire goal has been to recover my son from the “Autism” that didn’t allow him to speak, didn’t allow him to communicate or understand the world around him.  I am not trying to remove what is essentially him, his way of looking at the world, his interesting and unique way of seeing things…I prize those things.  I am fighting for him to be able to communicate those things to the world, the way that I see people with Aspergers and High Functioning Autism do.  Imagine the tragedy if Temple Grandin’s mother had not worked tirelessly to help Temple to communicate with the world!  What a tremendous loss.  When I speak of recovering this is what I am referring to.

I don’t know what causes Autism, but five years in there are many things that I do know.

1. It isn’t just Autism, it is Autisms.  Two children can both have a diagnosis and display vastly different symptoms.  If you know one child with Autism you should not assume that other children will be like them.

2.  In the wide range of Autisms there are many people who lead wonderful, productive happy lives.  On the opposite end of the spectrum there are children and adults who are incapable of connecting or communicating at all with the world around them. In between these two groups is where the vast majority of people with Autism fall, individuals who fight on a daily basis to communicate – to understand and to be understood. 

3. There is help for those who want and need it.  In some cases there is even recovery.

4. My personal definition of “Recovery from Autism”? – removing the obstacles which prevent a person from being able to communicate substantively with the world around them, so they can freely interact within the community of their choice.

Simply put, I don’t want “Autism” to stop my son from doing what ever he wants.  If he wants to be friends with a little boy he just met at the playground, I want him to be able to without “Autism” tripping him up.  If he wants to go to MIT and study rocket science, I don’t want stinky old “Autism” to gum up the works.  I want him to be who he is, but who he  is, is not his diagnosis. 

Daily we fight the part of Autism that takes him away from us.  We also fight the perceptions of the world about what they think Autism is and how they think my son should behave.  At the end of the day I don’t have a lot of fight left in me to defend my choice of words.  My son is recovering from Autism, everyday he gets closer to being someone who will walk through the world being able to do what ever he wants.  I’m good with that.

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