Monday, April 4, 2011

Our Family's Journey With Autism

April 2nd was World Autism Day and I really meant to write this post then, but I don't do lots of things when I mean to, so here it is two days later:

I post a lot about orphans and adoption, because those things are close to my heart, but I have yet to post about another thing very close to my heart. Autism.  I don't really know why I haven't posted about it, but a good friend told me I should talk about it when I am okay to talk about it and I've taken that advice to heart. I'm okay to talk about it now and I want to talk about our journey, because if a family comes along that we can help through this process, I definitely want to be able to help them.

With 1 in 110 children diagnosed with Autism the chances are high that you have somehow been affected by this mysterious disorder.  If you know our family well, you know that we certainly have.

A little over a year ago we found out that our Ava was on the Autism Spectrum.  Ava always had lots of words and was high functioning, so many of the signs were missed by us, and her doctors. We told ourselves that she was unique and quirky and would just grow out of these things. When we mentioned our concerns at her 2 year appointment her Dr. said "I promise, she does not have Autism" but recommended that we watch and wait and that she would probably grow out of these things by her 3rd birthday. At her three year appointment her Dr. "shared our concerns." (Moral of this paragraph: LISTEN TO YOUR INSTINCTS, MOMS!) This was just days before her younger sister was born and also (unbeknownst to us) too late (you have to be diagnosed BEFORE age three) to receive any help from the state to pay for therapy (which for some families can reach $30,000 per year!).

The following days months were dark.  I wouldn't recommend combining finding out that your child likely has Autism with post baby is hard enough to overcome without the other!  During those months I couldn't look at Ava without crying. I couldn't look at typical children without crying. I couldn't look at Nora without crying (if you have a sibling with Autism your risk increases). I couldn't say the "A" word without crying.  I took showers so that I could cry and hopefully no one would notice. I didn't want visitors for the new baby and I screened many phone calls. I could go on, but you get the picture, I definitely wasn't coping well.

My husband was worried, my parents were worried and my friends were worried.  I couldn't have gotten through that time without them.  But mostly I couldn't have gotten through the time without God.  This experience brought me to my knees before Him, I had never relied on Him more, and nothing had brought me closer to Him.

We soon started down the road of evaluations and eventually treatment.  God put the perfect people on our path to find the best therapies for our girl.  Through a friend of a friend of a friend I found out about HopeTN ABA therapy, and from all of our research we saw that ABA therapy was the best thing for children on the spectrum.  ABA therapy is just plain outrageous, but we got her on the waiting list in October and would deal with costs when, and if, she got a spot.  Until then she did speech and OT therapies and stayed at her pre school.

In May of 2010 we found out that there was a spot for Ava and she could begin ABA therapy and right now her ABA therapist comes to our house for four hours a week. She goes to the center four hours a week for a social skills group. And she is in pre school three days a week.  Her schedule is full, but Ava thrives on a schedule, and she loves each of these activities.

There are so many things that we take for granted that Ava doesn't naturally know how to do and must to be taught to her: Saying Hello. Goodbye. I like your shirt. Telling someone your name. Making requests. Speaking in sentences. Initiating play. Playing at all. Following simple directions. Making up names for name just a few. And there are some things that she is a rock star at, like academics and her memory and vocabulary are ridiculous!

Costs for these therapies are definitely high, but we knew that we would have to make it work, and OF COURSE God has showed off along the way with his provisions. He is so good and shows us over and over that He will provide what we need.

One year later:

Ava is doing so great! We are continually amazed at the progress that our amazing girl is making and so excited to see the progress to come. She is doing well academically (actually she is a rock star academically), she is having and INITIATING conversations with people, she is interested in and learning how to play with her friends and has expanded her interests from just Mickey Mouse and Rocket to numerous other play schemas, and some of her most notable stemming activities have diminished or disappeared (just to name a handful of her accomplishments)! We aren't the only ones who notice; friends, family, and teachers at her school are just blown away at the difference from last year at this time. We still has so much to work on, but couldn't be prouder of how far she has come. The Lord placed the perfect people in front of us to be able to make the best  decisions for Ava. We know that all blessings come from Him and we are so thankful for the blessing of progress!! We are forever indebted to everyone who has prayed for Ava over the last year and we ask that you please keep lifting her up.

Many Blessings,
The Millers


Brinn said...

beautifully written ashley! so glad to hear of ava's progress!