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Wednesday, April 2, 2014

Autism Awareness--Guest Blogger

Today I am going to do something I never do! I am having a guest blogger! My good friend is going to talk to you about her own experience of discovering and coping with her son's autism. My friend's son often plays differently than other children his age.  One of the unique things he does involves lining items or toys up, something that is common in children with Autism.  The pictures below depict some of his "creations" that my friend has randomly stumbled upon throughout the house. Now my friend is an wonderful mother and person and I am always so amazed with how she deals with what life has thrown her way and she does it with grace and style. So without further ado, here is my first guest blogger post. 




My name is Scarlett, and I am brand new to blogging.  I am thrilled that Carrie has asked me to be a guest blogger, so here is my big shout-out and thanks to Carrie for giving me this opportunity!  Carrie has been a friend of mine pretty much from the beginning of the journey that has led me down the path to creating a blog.  She has seen the highs and lows of the roller coaster ride I have been on for the past three years, and she has stuck by me loyally throughout the whole thing.



My husband, Andre, and I have two sons – a 3 year-old (I’ll call him “Chickadee”) and a 6month-old (he’ll be “Sparrow”).  Our boys are beautiful, smart, and pleasant boys…no different than what most people reading this would probably say about their own kids, right?  Ah yes, the distorted, biased view we all are entitled to have every now and again just because we are parents.  Well, before you shake your head, roll your eyes, or assume you’re reading the blog of yet another mama who paints only the pretty picture, please let me continue.  I, personally, have had enough of reading blogs that bring up feelings of inadequacy and self-doubt. 



So let’s talk about this roller coaster ride I mentioned. I didn’t buy a ticket...no one gave one to me…I didn’t even want one.  Nevertheless, I found myself harnessed into the end car.  You know the one I’m talking about…It’s that last seat in a train of many, the one with the obstructed view.  It’s the one where you are blinded by the heads of the people occupying the cars in front of you…the one where tension builds and builds as you listen to the metronomic, rhythmic clicking then feel the pull of gravity weigh your body down. The coaster climbs higher and higher toward the plummeting descent you know is awaiting, but you can’t see ahead far enough to feel adequately prepared for it.  From this seat, you know in your mind what may exist around the next turn - the drops, the loops, the sharp turns, and those upward climbs - but you have no idea when.  You get to experience a tremendous range of emotions, sensations, and experiences all in under 3 minutes! 





So what exactly is this roller coaster ride I’ve been on for 3 years?  The Autism Spectrum Express – now found at various locations all throughout the nation, all throughout the world!  In fact, the parents of 1 in 68 children are currently riding the Autism Express.



Our ride officially started in August of 2013, after about a year of intensive Early Intervention services.  Chickadee’s development was not progressing at the expected rate. His pediatrician was concerned, and we as his parents were even more concerned. Andre & I found ourselves sitting in a small office in a Boston Hospital on a hot August morning, looking across the table at the person who we hoped had some answers for us.  She then uttered the sentence that plopped us into the back car of The Autism Express, like it or not.  “Chickadee is on the Autism Spectrum.”





Wait a minute, I am a Pediatric Occupational Therapist.  I have worked with children on the Spectrum for 12 years.  How did I miss it in my own child?!  Talk about feelings of inadequacy!  I’m in a much better place with that whole thing now, thankfully.  But that place I’m in now is far from uncomplicated!  I swear, one day I will find a way to get a nickel  for every time I say “__________ is not for your mouth,” or “we don’t ____(insert socially inappropriate act here).”  Oh yes, I’ve said some things that really make me wonder!  “We don’t lick windows.”



It all comes down to this – I’m a parent just like any other parent.  I’m a hard working mama, just like any other mama - stay at home or working out of the home. The difference is that managing the day to day life when raising a child with Autism requires a unique type of planning, energy, time and patience.  Let’s be honest – it’s exhausting and can at times be all-consuming.  But -and this is a big “but” - I have the rare opportunity to learn more about life from my child than I, myself, can ever teach him. 





I have learned first-hand that things are not always what they seem.  We all have been guilty of judging, we all have made assumptions about others.  I can’t even count the number of times some one in public has made a negative comment about Chickadee or his behavior. I am oh so familiar with that disapproving glare that just screams “Wow, you suck as a parent!”  If only those people knew how sweet, kind-hearted, and truly special my little sunshine of a child is…if only they knew how hard I work with him for what feels like every minute of every day.  If only they knew how a little piece of my heart breaks every time I see Chickadee try to engage another child only to be rejected or isolated because his attempt is misconstrued.  





Today, April 2nd, is Autism Awareness Day all around the world.  Each April 2nd, the organization Autism Speaks celebrates “Light It Up Blue” along with the international autism community.  “Light It Up Blue” is a unique global initiative that kicks-off Autism Awareness Month (April) and helps raise awareness about Autism. In honor of this historic day, many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores are amongst the hundreds and thousands of homes and communities that participate in “Light It Up Blue.”



Autism Speaks Light It Up Blue

Okay, so maybe you aren’t going to change your white light bulbs to blue (although, Home Depot does sell “Light It Up Blue” bulbs and night lights).  However, that doesn’t mean you can’t do anything to spread Autism Awareness.  If you pull anything out of this whole story I have shared with you today, please realize the impact it could have if you simply take an extra second to think before making that next judgment or assumption.  Who knows…maybe the next time you see a young boy flop on the ground in the grocery store, cover his ears then bolt toward the exit…it could be me and my Chickadee.  Or it could be another mama (or father) trying her best with what she has left and available at the moment while taking those unexpected sharp corners and drops on the Autism Express. 



For more information on Autism or “Light It Up Blue,” see the Autism Speaks website or the Light It Up Blue.


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