A Walk in Our Shoes: Autism in Acadiana
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What Does Hope Mean to You?
2/12/2014 6:58:58 PM
Recently, unexpected questions were posed for which I had no immediate answer. After mulling them over a bit, here is my attempt to answer, "What does ‘Hope’ mean in the Walk for Hope? What are you ‘hoping’ for?”

When my now 20- year-old daughter was much younger, the challenges we all faced as a family by autism seemed insurmountable and unrelenting. There were: communication deficits - she babbled, a lyrical lilting rhythm of nonsense syllables and barely spoke 3 words consistently at age 2; daily instances of self injurious behavior – she hit her head on any hard surface she could find; and aggression – she kicked, head butted, slapped, bit, pulled hair, pinched, and use-your-imagination, etc.

We wondered how to teach her to communicate with us so she could make herself understood and then go on to learn academically. With the help of great speech therapists and early interventionists, Catherine gradually acquired the skills to communicate very basic needs and wants. But true communication and interaction remained very limited and I, as her mom, wondered - what would the future hold for her?

Catherine’s teachers and I observed that she really enjoyed hearing music; we used this interest to gain her focus and attention, we would sing simple children’s songs over and over. When Catherine was in preschool, we began focusing on colors and letters using music, a color song for which I still remember most of the words, "R-E-D, RED, R-E-D, RED, that spells "RED”! Catherine seemed to enjoy the song, and would attempt to sing along but could not consistently identify specific colors when they were presented to her.

We owned a desktop computer, which we would let Catherine use sparingly. She would pound away on the keyboard so hard, we worried she would break it. I would often pull up Microsoft Paint for her because engaging in any art activities – painting, coloring, and drawing –made her really happy. And when Catherine was happy, we all breathed a little easier.

One day my daughter was happily banging away on the computer keyboard while I was occupied in the kitchen. I hurried to finish what I was doing at the time and reminded Catherine once again to NOT hit the keys quite so forcefully. Then I noticed the sound of the banging was different than usual; it was a little softer and there seemed to be a pattern to the key strikes I was hearing.

I turned the corner and there sat Catherine, with Paint open on the monitor. I saw bright large letters on the screen, which seemed to be words, all running together. I curiously stepped closer and saw the words from "The Color Song,” in order, and she was highlighting them with the correct corresponding colors! I nearly fainted.

I asked Catherine what the individual colors were and she identified them all correctly, words I had no idea she could spell at all. I remember breaking down in tears, hugging my smiling daughter, choking out how proud I was of her. Catherine just looked at me, puzzled, like, "What’s the big deal, Mom?”

And then I knew – there would be hope for the future. Catherine had demonstrated, without a doubt, that she had absorbed the lessons we all had worked so diligently to teach her. She just needed to learn a way to show us what she knew.

What a powerful lesson I learned that day - to not give up on HOPE - the hope that Catherine could, and would, continue to learn and maybe one day amaze us all with her skills. And she continues to demonstrate her abilities to this day. But, that is a post for another day.

To be continued….

Vickie Nettles is a mom to three grown children, the youngest of whom has autism. She has been a member of Autism Society Acadiana since the mid 1990s. Ms. Nettles has served in numerous capacities: as volunteer, board member, and board president for six years. She currently works as the Autism Society Acadiana’s administrative assistant, the first employee hired by our organization.
Posted by: Vickie Nettles | Submit comment | Tell a friend

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24 Comments
victoria trahan
2/12/2014 10:49:56 PM
Very touching, awesome, hopefull story
Sue Baudry
2/13/2014 12:53:17 AM
Just when I think you have given us your ALL, you still amaze me. You are the finest individual I know. While I still wallow in my frustrations and anger, you reach out and help OTHER people, like me. Thank you Vickie.
Karen Scallan
2/13/2014 7:10:05 AM
Wonderful story Vickie, I can't wait to read more...
Tammy
2/13/2014 7:37:41 AM
What an inspirational story. It brought tears to my eyes from happiness as I too have a child with Autism and know the feeling of accomplishments. Hope and faith has brought my son through many obstacles and we work every day to achieve even more.
Tammy
2/13/2014 7:46:19 AM
What an inspirational story! It literally brought tears to my eyes. Tears of happiness. I also have a son with Autism. With hope and faith in our son we have over come many hurdles of life and continue to be proud of the accomplishments he has made. He will be 9 at the end of this month and will be making his First Communion this weekend. We are overwhelmed with joy of how proud he has made us. This goal was something we didn't imagine would happen when he was younger because of his lack to be able to communicate and being so aggressive. Hope is a strong belief you have to incorporate in your life to keep moving forward.
Pamela Melancon
2/13/2014 8:24:42 AM
Great article Vickie, I have known you since you were a young girl and am so proud that your love, dedication and your intelligence and big heart with Catherine grew and you embraced, and continue to do so, so many. You are so many times just what was needed by your words and deeds. You are a very special person to all who know you and meet you. Thanks for all you do!
Andrea Fleming
2/14/2014 11:52:49 AM
Really enjoyed the post. I loved your descriptions of the small discoveries that led to bigger breakthroughs. These are wonderful moments. God bless you and your family.
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Hope means when you are absolutely fail to achieve your goal but still struggle to win. Your experience is such wonderful and a good lesson for others to realize how life is challenging and how HOPE is important to face and win all these challenges.
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