Wednesday, January 28, 2015

The Comments Section

Sharing my writing has been a very interesting experience for me.

For the most part, I have received very positive feedback.  I have had the wonderful opportunity to touch base with other autism parents, and it always helps me feel less alone.

I have also received some negative feedback.  Among other things, I have read comments saying that I discount my son’s feelings.  That I should be grateful for every second with him.  That I should be ashamed of myself for not thinking of adults with autism.

I know that everyone has their unique perspective.  If I was an adult with autism, my thoughts would be for the writer’s son when he himself is an adult with autism.  I get that.  

What I don’t get is others thinking that because they read a piece of mine, they know what I'm about, 100%.  That I believe my life is hell.  It isn’t.  I never said it was.  I did say that sometimes we go through “autism hell” because we do.  My whole family does.  TJ does.  Peter does.  

(We also go through teenage hell, PMS hell, grumpy hell, I'm-having-a-bad-hair-day get the gist of it.)

I also talk about how we get through it, all of us, as a team.  We are a tough team.  We are a loving team.

I write about small glimpses of time.  A tiny slice of an event.  How it effects us.  How we cope.  Or how we fail to cope.  

We are human.  Just like you are. 

Life is messy.

But life is also amazing.  Being a mother is amazing.  Being a wife is amazing.  Being an autism mom is, indeed, amazing.

My life is full of gifts.  Even in the middle of the tough times, I know how incredibly lucky I am to have these amazing gifts.  My boys.  My husband.  Autism or not.  We are who we are.  And I wouldn’t change a thing.

I am often asked if I could make autism disappear, would I?

That’s impossible to answer.  So many times, I want to take away TJ’s struggles.  But so many times, I want to take away Peter’s struggles, too.  That’s not autism.  That’s life.

I also can’t imagine our life without autism.  Autism is not all that TJ is, but it’s a part of who he is.  So is the fact that he has a great sense of humor.  And green eyes.  And great knowledge about animals.

Every time I write about my boys, I tell them what I’m sharing.  Sometimes they want to read it, and I always let them.  Sometimes they could care less.  But I never write anything that I would be embarrassed for them to read.  Never.

So comment as you will.  Or don’t.  I’m still going to write as I have, sharing my experiences.  Our experiences.  Our successes, and our failures.  Our story.  

I sure do love our story.  And I can’t wait to see where it takes us next.


  1. "But so many times, I want to take away Peter’s struggles, too. That’s not autism. That’s life."
    I have such, such mixed feelings about the "would you make Autism disappear" question. I wish that no child ever needed to come to an Occupational Therapist to get help doing the every day things that should be easy and enjoyable for him. I wish we knew more about what it is and what's causing it...then I could more confidently say whether or not I'd want it to disappear.
    Keep writing, mama! I love it!

    1. Such a good point Rachel!!! It's an impossible question. I can't imagine TJ or Peter or me or our lives any other way. And you, my sweet, would be out of a job. :) You are an angel to so many, as you were to us, and I thank god that there are people like you working with kids like mine. Those lucky kids! XOXO