This Is OUR Story - World Autism Awareness Day

Today, April 2, is World Autism Awareness Day.

There has been so much recent talk in the autism community about hate versus acceptance.

As in, how can you hate autism and expect acceptance?  And if you hate autism, are you at risk of projecting that hatred onto your child, who then comes to believe that you hate him because of his autism?

To quote Brenda, from the blog, Mama Be Good, hating autism is unacceptable.  She wrote a very thought-provoking post about this topic and I want to highlight just one paragraph that she wrote:

April is Autism Acceptance month.  Not just awareness, but full-on acceptance, embracing the ups and the downs.  Not "I accept parts of autism,  the ones that are easy."  Not "I accept parts of my child."  But "I embrace my child, every single part of him, easy and difficult."  And "I acknowledge that hating an inherent, biological part of my child is unacceptable."  

I totally agree with her statement - "I embrace my child, every single part of him, easy and difficult."

I embrace all three of my daughters whole-heartedly and unconditionally.  I love them no matter what, forever and ever.

But here's where my heart gets troubled:  I don't want to accept autism.

Now before you get all mad and start firing off ugly comments and vow to never read this blog again, let me explain myself.

I am 100% willing to accept autism (or any special needs, for that matter) as a whole.  I am a compassionate person and I've raised my big girls to be the same way.  I believe special needs individuals have as much to offer our world as any neurotypical person.  Maybe even more so.

But I'm not ready to accept autism in my daughter.

And I want to tell you why.

Most of you know, Lily was a surprise for our family.  And to be perfectly honest, I spent much of my pregnancy trying to come to grips with this unexpected change in my plans.

But one night, I got an incredibly clear picture of how much I loved and wanted this precious baby girl.

After Lily was born, on day five of her life, in the middle of the night, she quit breathing.

Ryan rushed that tiny child of mine into the living room, laid her on the rug, and began performing rescue breathing, all with tears streaming down his face.

I called 911 and was literally screaming hysterically into the phone that my five day old daughter wasn't breathing and we needed immediate help.  The operator stayed on the phone with me and honestly, I remember her talking.  But I wasn't listening anymore.

Because at that very moment, I began pleading with God - "I want this baby!  Don't you dare take her from me!  I want her!  PLEASE!"

After nine months of uncertainty, all it took was a frantic few seconds of thinking my daughter might not live to convince me that beyond a shadow of a doubt, I wanted this baby girl.  I chose her.

An ambulance ride and a long stay in the hospital revealed that Lily had a large hole in her heart that would require open heart surgery.  Also, her kidneys were not fully functioning and she had severe GERD.  She also had pyloric stenosis, which would need surgical repair.  Needless to say, we spent the majority of Lily's first four months of life in the hospital.  I kept a hospital bag packed in my closet, ready to go at a moment's notice.

At four months of age, we temporarily moved our family to a little apartment in Houston, where Lily would be having her heart surgery.  We were there for a month.

When we arrived back home in Austin, Lily was well.  Her heart was perfect, her kidneys were on the road to recovery and our girl was good.  She began hitting all those lovely developmental milestones, of which I had been watching anxiously for since children who have heart surgery can sometimes be delayed.

Lily Bird was a joy.  By the time she was 14 months old, she was walking and talking.  She was reading books with us, shaking her head, and pointing to things we asked her to.  She loved doing the hand motions to "Itsy Bitsy Spider".  She would walk into the church nursery and say, "Hi there!"  She would smile for a camera and say "uh-oh" when she dropped something.

And then came the unexpected, yet again.

Around 19 months of age, Lily began regressing, losing skills at a fairly rapid rate.  No more waving.  No more singing.  No more talking.

Our baby girl was gone, locked inside herself, in her own world that none of us could penetrate or understand.

We immediately began searching for answers and seeking medical help, visiting doctor after doctor, specialist after specialist.  Lily began multiple therapies.

At the age of 3, Lily received an autism diagnosis.

And while she has grown leaps and bounds since that day, she is not the baby girl I remember.  She is not that little girl we had for those too brief months.  My daughter was not born this way.

So why do I not want to accept autism?

Because I truly believe autism is holding my daughter captive.

Oh, she's still my daughter, no matter what.  And I still love her unconditionally, with every fiber of my being, all the more because I chose her.  If she stays this way for the rest of our lives, so be it.  And she will never hear the words, "I hate autism" cross my lips or see them on this blog.

But autism makes me mad.  And sad.  And frustrated.

Because I believe it's holding that little girl that I remember captive.  That little girl I remember is in there somewhere, buried underneath a brain that somehow got confused.  A hostage of a mind that no longer works as it used to.  

It's those feelings that spur me on and keep me fighting to win back that little girl I just can't forget.

But if that little girl never returns to us again?  I'll still keep fighting for her.  To make her life count for something.  To have her become exactly the person God intended for her to be.

And I will love her, forever and ever, no matter what.

Do I hate autism?  No.

Do I accept autism?  No.

But that's just my story.


If you'd like to hear Ryan and I tell "The Story of The Bird", click here.  The story starts at about 12 minutes.