Thursday, July 21, 2011

one year. one jigsaw.

One year ago, I was in despair. Absolute. Horrible. Despair.

What I remember of last July was the feeling of loss. It felt like my heart had been ripped out of my chest and I had no clue where to find it or how to piece it together again. I felt like an absolute failure. Truly. Because you want to be able to fix any problem that your kids have. Anything. From small to huge. You are the parent. Your job is to fix, right? Well...sure there are lots of problems that you simply cannot fix. Those are the problems that pull at your heart strings. And this gutted me.

Autism.

If you have never read this, I encourage you to read how I felt one year ago on my personal blog. The entry title is called Empty Jigsaw.

I have a hard time reading that...I feel too much of it yet.

On the 8th of this month...we received the official letter from Dr. MAL that Maddy was in remission. Her observed and tested scores proved that she was Non-Autistic (yes, I know...i hate that word too...autistic....). But it wasn't just those words that freed us. It wasn't just that we got to see the words REMISSION in all caps. It was the fact that a year ago, this child was suffering from moderate autism. Her overall age level was well below average at the 7th percentile.

7th. This isn't like height/weight...this is her cognitional living. 7th percent of her peers. It still makes me want to throw up.

Today she is at 63rd. She is average...slightly above average. 63! In one year.

Dr. MAL writes "The profile observed today is consistent with that of a typical functioning 3 year old."

Typical.

When you are a teen...you hope to be anything BUT typical...and someday I hope she does strive to be as non-typical as she wants in those years...but for now...TYPICAL is an awesome word.

I wrote last year that "they say there is no cure for autism. I say you don't know my God." Those were some heavy words. I will admit it. I probably erased that phrase a million times before I published the post. I hesitated. Who am I to be so bold? Who am I to declare that? Then I thought, who am I then if I don't believe that? Surely not a Christian. If I didn't believe that God was capable of removing Autism from my child then does that make Autism greater than God?

And let me say this...I believe that God moved mountains in our life. I believe He did amazing things. The FULL credit goes to Him.

I think sometimes people get confused by this though...that if they just pray and do nothing then somehow it was God's fault for not moving. I think we still have to work for it. He is in control but we have to be willing to do whatever. whenever. however. Trusting in Him. Proverbs 3: 5-6 says this "Trust in the Lord with all your heart and lean not on your own understanding, in all your ways, submit to Him and He will make your paths straight."

I know I'm getting preachy...hang with me. Where is the evidence of this...here we go. So first off, we just happened to move to a place where I would just happen to meet the most amazing group of friends and when Maddy was diagnosed, we just happen to be under the supervision of a doc who just happened to have studied under Dr. Mulich in Ohio who just happened to know alot about ABA, and when we just happened to pick Ann Carlsen Foundation, they just happened to send us to a conference with CARD who just happened to be founded by Dr. G. who just happened to be involved in the original Lovaas study with ABA and Autism....and CARD just happened to be working on the SKILLS database and they just happened to have a spot on their bata program for us and we just happened to be able to find a group of people willing to do ABA who almost all of them just happened to move here right around the same time as we did. And Maddy just happened to respond really well with ABA taught by a bunch of complete amateurs (don't worry guys, I'm board certified, right?! ;) ha) who 2 years ago had never thought about the steps to chain ABA programs. All of that just happened. Purely a coincidence. Right? I think not. I think that is God. Moving.

Dr. MAL writes "the support and advocacy that Maddy has within her family and community is outstanding, and her progress is directly related to their time and dedication. Her results are not typical of the expectations for ABA in general."

So thank you. all of you. My team. My prayer warriors. My community. My family. My God. Everyone. thank you.

When I wrote "empty jigsaw" - I could have never imagined writing this entry one year later. Never. And that is testament to how amazing our God is and how wonderful Maddy is. She is a miracle. She is a blessing. She's still three. She still has her quirks...today she tried to convince me she couldn't remember her alphabet (she can...she was just being 3).

Tonight after reading books, I set the books on the floor and stood up to put the girls to bed and Maddy says "No, wait, gotta clean up the books first, Mommy."

Really, kid?

Go for it.

This morning when she woke up, about an hour after her sisters, she walked into the living room and said "good morning, girls."

At supper with pizza all over her face she says, "look at me girls, I'm all messy!" And I love that she calls her sisters "girls" and "sisters" as well as their actual names.

Yesterday I asked her how she was and she said "I'm four." LOL. We're still working on that one!

I will not forget July 15, 2010. I will never forget the agony.

I will never forget the first time Maddy held my hand after an ABA session.

I will never forget the first time she looked into my eyes and said "i love you, Mommy"

I will never forget July 8, 2011. I will never forget the joy.

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