Friday, April 26, 2013

Autism Awareness Month 4/26 - Blissfully Discontented - Blogger

Every once in a while I read another blog and shake my head in jealousy saying "damn, I wish I had written that". 

Blissfully Discontented makes me say that every time. She has such a way with words... truly a sensory delight to read anything she puts to paper. So I asked my favorite writer out there (My Favorite blogger, Kurt Vonnegut was unavailable), if she would do me the honor of contributing. 

So, if you want to know who do I read, love, and respect... 

Ladies and Gentlemen, I present Blissfully Discontented...

What Does Autism Mean to Me?
One year ago, yesterday, I walked into a doctor’s office with my son, Ben, and for the first time in our two years of seeking an answer we FINALLY found someone who could see him.  I mean REALLY see him.  April 10th, 2012 was the day the word Autism entered our vocabulary.  And our world.
I make it sound as though the word thundered out of the doctor’s mouth, shaking the ground beneath us, knocking me from my perch on his leather sofa, sending me into a spiral through another dimension.  Okay so maybe it felt that way at first.  Truth is, it was no surprise.  Rather than feeling fear I felt relief.  I felt resolve.  I felt validated.  You see, we had been living the Autism journey for 6 years and hadn’t realized it.  Did I consider it?  Absolutely.  Did anyone else acknowledge my concern?  Absolutely not
And so we began our trek, blind as bats, and ignorant to boot.  Soon after getting the diagnosis, I found myself eyeball deep in Autism-related internet vomit.  Facebook pages, agency websites, you name it.  I didn’t entirely understand what I was reading yet or what it all meant.  I recall sharing a story on Facebook one day, regarding a cure for Autism.  A friend of mine commented on my post that she was rather frustrated with the thought of curing Autism…and that she couldn’t imagine her son who is also on the Spectrum any other way. 
One year later…I get it.
There are certainly triggers, responses or situations I wish I could change.  There are nights when I’m on my knees praying to God for the next day to be better.  Days when I just want to crawl into Ben’s school crying and begging for help.   I’d be lying if I said I spend every day appreciating what some would call sheer quirkiness.  And yet…I’m learning to appreciate every seemingly small success that may not have occurred to me if Ben were not on the Spectrum.  Things I know I take for granted with his siblings.  

So what is Autism to me?

It’s a little boy whose creativity in costume design never ceases to amaze me

It’s a little boy who is never scared to climb the mountain before him.  Some days to the extent he puts himself in danger, yes.  But fearless, nonetheless. 

It’s a little boy who has challenged his siblings to think outside of the box and has taught them to love unconditionally.  Asking for help with tying his shoes.  Or simply partaking in a light saber battle.

It’s a little boy who some days just needs solitude from the world but doesn’t mind letting his momma join him.  Soaking in a clear emerald sea of water while the sun sets and the beach clears.  Not saying a word.  Just.  Being.

It’s a little boy who has tested us beyond belief and taught us what he needs when the all else is simply too much for him to bear.  Letting us hold him tightly while he rages against us and the world.  Feeling his sweet little body fall asleep in our arms.

It’s a little boy who after two years with his classmates, makes the effort to build friendships in school, invite those friends to his birthday party, and despite no one attending, he sits in front of his cake with his subtle smile across his sweet face making his wish and blowing out his candles, finding the good in our celebration.

It’s a little boy who astounds us with his thoughts and words.  Leaving me speechless on a regular basis.  He may not always verbalize what is going through his beautiful mind but when he writes them down…look out. 

It’s a little boy who can’t sleep at night unless he’s surrounded and covered by his weighted blanky and every single stuffed animal he owns.  Who still has his sleepless nights and lands at my bedside from time to time, without saying a word but gently slipping under the covers and folding into my arms like the little brown bear that he is. 

It’s a little boy with sock problems and waistband problems, forever seeking his “comfy clothes” because heaven forbid the hem of his pants touch the floor and slip under his feet.  A boy who never found so much joy as the day we discovered mommy’s favorite running socks come in kid’s sizes too!   And I get a chance to save the day.

More than anything…I want you all to know that Autism is different for everyone.  Some days my Ben melts down.  Some days he only speaks movie lines.  Some days he asks for food combinations odd enough to make my stomach churn.  Some days he plays alone at recess, in his own little world.  Some days he is completely engaged.  Some days he smiles and laughs and jokes with his siblings.  Some days he does all of his homework just as he should.  Some days he transitions just fine in the classroom.  But every day he has Autism.  It is a part of our lives that we are not only coming to terms with but learning to appreciate.  I wouldn’t change Ben one single bit.  I’ll take those frustrating days in a heartbeat so that I can watch him experience the win, the success, the glory when he pushes beyond what others see as his limitations.

THAT is what Autism means to me.


  1. I love you. You are one of the most courageous women I know. You stand like a guardian angel, strong and comforting but SO protective over your children and friends. I am so blessed to say, you are my friend. XOXO

  2. This is such a beautiful tribute to your relationship with Ben. Beautiful. Your children are so very lucky to have you. Thank you for sharing this with us, Bliss. xoxo

  3. Gorgeous. You're where you need to be. Advocate and mother--mama bear extraordinaire. Other moms new to the diagnosis would do well to look to your example. *MWAH* --Dawn

  4. I love you and Ben so very much. You amaze me every single day and I am so very lucky and blessed to call you my friend. Love as always. xoxo

  5. This is truly beautiful. And inspiring. Even inspiring for mother's who don't have children with autism. It's inspiring in a way that makes you see things for what they are and appreciate them as they come.

    Your son is one handsome little man. I'm sure he'll make a difference in the world.. if he hasn't already.

  6. I'm just sobbing at this Jen. I love your heart so much and I'm so much better for knowing you and following your words. Ben is a star and he's so lucky to have you and you to have him. xoxoxo

  7. How much I love the pic of him in the water, just "being". Solitude, but not solitary. Love you and him! JEE

  8. This is beautiful - you are beautiful and oh how I love that do so so many people. xo

  9. Thank you - my just turning 18 year old brilliant, funny, quirky, entertaining son has been everything you write, and is living life much larger than I did at his age. He has been a wonderful influence in my life, making it richer an better. Your story brought tears to my eyes. Again, thank you.

  10. That is just beautiful and summarizes autism for all us. Thank you for articulating the things we all feel about our kids on the spectrum.