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.”
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.
You can also follow my blog which is coming soon!
