What my name is worth.

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I am finding more and more that people (especially some who do not have children or some who do not have children with special needs) miss the intrinsic nature of special needs and medical-related conditions such as autism and how they regulate a family’s every day life.  It’s not a construct or a purposeful attention getter.  For families who handle the challenges of autism, autism as a word holds no stigma.  It is just a what-is sort of word.  It’s not a dirty word; it’s life.  It affects how you walk to the car, how you get dressed, how you plan for a family outing, how you plan for a holiday, how you do just about everything.  There’s not much fly by night unless you’re looking for a meltdown.

And within that everyday life, autism can affect so many larger pieces… the structure of a day, the schedule of a week, employment choices, lifestyle choices, location choices… everything.  I remember being younger and more ignorant when using that word “autism” would hold weight that could easily be flicked away as if to say– “so what?  autism?  that is not an entire life… why mention it?”

Of course it is not an entire life, but it is our life right now.  We have embraced that this word is the best word to describe what we do, what we think about, how we feel, where we go… and as much as it is on the minds of all in our home, I am the spearhead of all that deals with therapy and doctor appointments and research and daily activities.

I’m a singer, sure… I sing.  I sing for fun.  I’m a writer, sure… I get paid to do that, and I work to protect the environment.  What am I really?  I’m a MOM.  My children are my heart.  And what am I doing with them on a daily basis?  Here is our newly-revised schedule:

Monday

ABA 2 hrs

Tuesday

Transition to Preschool 2.5 hrs

(1X month– Baby Girl speech 1 hr)

ABA 2 hrs

Speech 1 hr

Wednesday

Baby Girl Developmental Intervention 1 hr

ABA 2 hrs

OT 1 hr

Thursday

Transition to Preschool 2 hrs

ABA 2 hrs

OT 1 hr

Friday

(1x month Physical Therapy)

ABA 2 hrs

And while I am driving to transition to preschool, I am singing or listening to music of my choice because my kids tend to like my voice (for now) and anything I choose to listen to.  And at night when they go to bed, I read and write and work like a crazy lady.  Whenever I get a chance during the day, I brush up on work, and I try to keep up on my house.  But what is my life really lately?  It’s me advocating for things related to this word autism.  It’s our lives right now.  It is the reason I do what I do how I do it.  It might not be US, but it is a part of us… a part that has still recently (I mean it has not even been six months since the diagnosis) become clear to us.  There are so many questions left unanswered and screenings left to be done.

So won’t you just say it?  That being an autism advocate is MY life, and that it is okay. It isn’t an over-dramaticized or a stigmatized or an ugly thing… autism isn’t a dirty word.  It’s a word worth mentioning.  If you mention me, spread awareness, because that is what my name is worth right now.

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About rhapsodyinautism

I'm a Mom of two little ones-- a two-year-old son newly diagnosed with autism spectrum disorder and a baby girl who is too young to make any guesses. I work a little bit from home for an environmental nonprofit, and I am a freelance journalist. I love cooking, singing, and autumn weather. And I'm married to a brilliant, involved Daddy. My son is an auburn-haired smartypants who loves trucks and jazz. He taught himself the alphabet at 20 months. He has a beautiful social smile, but he finds eye contact aversive. He is the reason I am writing this blog... because there is a huge lack in legislation, funding, insurance coverage, and understanding in regards to autism spectrum disorders. This will be my place to advocate, tell the tale of our journey, and hopefully share a few tears and laughs along the way. This is our family life, and we have embraced it.

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