Monday, April 2, 2012

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.


  1. I often feel like it kidnapped Cameron and took him away. It stinks but I've accepted the fact that it's here and it is what it is. We have no choice but to find the positives and move on and find help for him. This is what God gave us and who am I to hate what God gave me?

    1. You're right, Allie. I know all of this happened for a reason and I may never know why. So I just move along, going through the days, doing the best I can for Lily.

  2. Dang, that's an excellent post. Cried, as Magnus who is 20 months looks at me and says, choo choo. Come on, Lord! You know why!

    1. Record that precious baby boy talking! Words are definitely something to be cherished. :)

  3. I agree with your sentiment. I love my child, I don't love what happened to his brain. Sometimes, some children experience an opening of some of the locked doors. I hope with all my heart that happens for Lily. Great post!

  4. I started to ramble on way too long in this comment. Waaaay too long. This is an issue that gets me fired up personally, in a big way. For the purpose of this comment I will leave it at this: I agree with you. No loving, caring parent is going to be happy to watch their child's capabilities be robbed from them. It is perfectly ok to hate that happening, and perfectly ok to loathe the negative effects and still love and accept your child. In fact, I think staying fired up about it is helpful. It keeps you stubborn and fighting for the recovery of the skills they lost. I disagree vehemently with anyone who says it means you don't love your whole child. That is so offensive. We are not our struggles. I have a physical disability. It is not ME. My child has autism. She is NOT autism. These are just things that our bodies deal with, they are not who we are.

  5. Very powerful words, Lana. Praying with you.

  6. I loved listening to both of your voices. They are beautiful. Your post made me cry. Your story is quite different from mine but here we are, in it together. What I took away from the podcast was that beautiful sentiment that if God does not answer what you ask for in your prayer, there is something bigger and better coming. I think it is amazing that surgery can be performed on such a tiny heart with a dime sized hole as Ryan described it and heal Lily to grow and blossom and become the beautiful child I see today.

    Your story of regression is one I never faced with Tootles. He was, I believe, born with the autism. I never saw him lose skills the way you did with Lily. And because of what you went through, I can understand how you would feel that she has been "captured" by it. For us, Tootles was always quirky and different and verbal, just differently so. And despite our differences, I lean on you for support. I will be there for you for support. We share. We inform. We love each other's children from a distance. All of that makes the world smaller and unites us far more than pushing us apart.

    God has seen fit to put us all in contact with one another. Who am I to question that? I'm just grateful that you (and all of us within our community) have been there for each other and I believe always will be when we really need to. We are stronger than we know. xo

    1. Why am I not surprised you listened to the story, too? You are something else, Miss Karen. Thanks so much for your sweet, sweet words. I don't know that I'll ever be grateful for autism but I am grateful for you and our community. I am definitely a better person because of each and every one of you. I lean on you, too, my friend.

  7. We wouldn't fight so hard for our children if we "accepted" autism:) Lilly is so blessed to have you.

  8. Our stories run parallel. I don't hate autism, as it has made my family healthier, stronger...but it frustrates me that this "happened" by means of vaccines, food issues, and major overuse of antibiotics...

    But, like your daughter, my son had words. And even pooped on the potty before it all disappeared. He received the DX at age 3.

    This month, I'm posting stories and interviews from other autism mamas. I'd love to speak with you soon...

    1. Thanks for the comment, Nicolette. It IS frustrating to see all those skills just disappear, isn't it? I'll be visiting your blog today and look forward to talking more!

  9. Wow, I am about in tears. It's so hard to hear another story like this and it always brings up my own feelings with Brian. I completely agree and understand your post (and also Debbie's words above- AMEN!). I think where we find this huge rift in the autism community is because some kids are born with autism and then others regress and some members of the community absolutely refuse to believe that one or the other is happening- I'm fully aware that autism happens both ways and I think each way leads to it's own path of guilt, acceptance, grief, etc., etc.

    One can not understand the pain of having a typically developing child and then have them regress. It's not even your own pain- it's the pain you imagine your child must have. It's a nightmare. Sigh. I'm getting way too emotional and carried away. But thanks for pointing me over to this post!!

  10. You know, I don't really care that some of us reached autism in different ways. I just want us to stand together to DO something and make a difference for ALL our kids!

  11. I came over from UBP and am so glad I did. I don't in all honesty know all that much about autism, I never realised some are born with it and some regress. Whilst I can't imagine what it is like as a parent of an autistic child, I do understand the frustrations of something which has taken away part of the child you knew.
    You can love your child unconditionally but it does not mean you have to love what has caused the difference in your child.

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  14. It gives me a totally different perspective of my elder brother who started showing autistic symptoms when he was 2 years old. Till then he was a perfectly fine baby! This line touched a chord
    "Because I truly believe autism is holding my daughter captive." Now I will see my brother in a different light!
    A child who was robbed of his right to live a healthy, peaceful and harmonious life.
    What a selfish prick I have been, only to care about my own life. I hope god forgives me for my selfish attitude till now!


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