Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Saturday, April 23, 2011

why we do what we do.

I was asked a great, insightful question today...

"Why did you start writing about Autism...more specifically why would you share your personal life with complete strangers?"

Well...my first reaction was:
Because if there was only ONE person out there who happened to stumble across my blog in the middle of the night, after having a catastrophically bad day, and feeling alone in all of the crap Autism can throw at you...well, then I would hope they could read my "crap" and know they were not alone in it all.

I started writing because I would find myself many times searching for something...for anything that would help me understand all of this.
Something...more importantly someone that could cry with me...without having to talk about it.
Someone who really got all of this.
Someone who knew all the dirty secrets I kept to myself out of shame...out of fear...out of not understanding why this beautiful little person I created is creating so much pain in my everyday life.

I wanted a friend that I could just look at after the day I had and they would know....
They would know exactly what my look meant.
They would just know.

Obviously Autism can be very isolating.
Hence, why late at night after the storm settled I would sit down at my computer and just read.
Read the words of other parents who were going through what I was...in some form at least.

We all know what we have is very different.
No one has the same story or experiences.
All we can do is share...out of hope...out of frustration.

All we really want is validation that we are doing a good thing, hell that we are doing anything really.
I know so many times I felt that my days were melting into one another without any differences...without any feeling of accomplishment....just pure survival mode.
But that is something.
Surviving the really hard times make the good ones that much sweeter.

I am not an expert, nor do I ever want to be.
What I do know is that I brought my son into this world and he has Autism.
So why shouldn't I/we share our stories about them...the good, the bad, the everything.
You never know who you can touch or help with your story...you just never know what someone might be searching for at the end of their day.

Talk about the biomedical, causes, triggers, environmental factors...we all have our opinions on all of this.
I am open to all of it, I appreciate all of it.
I read articles, studies, peer reviews every week.
I find them all very interesting and pertinent to my situation at times, so that's always helpful and somewhat eases the practical side of me.

Practical however is not the side of me that sits down and writes any of these blog entries.

Practical goes and passes out right after I put the kids to bed and it is just me...alone, left with my heart and my thoughts of the day.

Practical is not what I would read about years ago when I needed someone to reach out to after I had a bad day.

So back to my original thought...why did I start writing?

I did it out of love for my son.
Out of necessity for my soul.
I did it because I don't care what anyone thinks of my personal life.

I did it in hopes that if I helped one person who felt as alone and helpless as I did at times, then I am doing something wonderful.
Because even though in my heart of hearts I know what I am doing every day for my son is wonderful, I would love for someone else to validate my actions through truly understanding it all.

Because sometimes we can't reach out to those closest to us...
And that is o.k.

Sometimes we have to reach out in hopes of finding truth...acceptance...peace...validation.

Sometimes we have a friend out there who gets us better than those we hold dear to our heart.

And that is a beautiful thing.
That is humanity at it's best.

And that is why I share...I know Kannon would do the same if he could.

peace :)


  1. Our children on this spectrum are so different, but we as parents have very similar feelings. We may never meet the individuals behind the words we read late at night that touch our hearts, but we feel a connection deeper than anyone can imagine.

    Thank you for your words, Kary

  2. You said it so well....that is why I write...that is why i read other ma ma blogs...so thank you for sharing your journey...

  3. "truth, acceptance, peace, validation..." Very well said. :-) that is what we, parents all seek. God bless you!