Eli’s Story

February 2015

As I’m sitting in a waiting room during my son’s therapy session, I hear the screaming, the head banging, and the emotional cries for help. I hear the loud voice of a child who does not understand, or know how to respond to the world around him. I hear a three year old little boy ready to escape, shouting for his mommy. I hear my son, Eli, and I am in tears right along with him.

As his mother, my first reaction was to break the door down, and save my son. I am his safe place. I can comfort him, I can save him. But I didn’t. I let him work through his problems with his therapist, and he eventually calmed himself down. He walked out to the waiting room, so happy and had the biggest smile on his face. That was the beginning of something amazing. Something that was the answer to my prayers. That was the start of something called ABA therapy. That was the miracle that could help my son find the path to endless possibilities.

Within a week, Eli had shown so much improvement. He would ask me every day if it was time to go “study”. (That’s what we call it, because calling it “work” didn’t seem like so much fun.) He was so excited to have that special one on one time with his therapist. Someone who knew how to communicate with him. It was like his voice was finally being heard. They knew how to reach him, and they helped him make sense of the world around him. He was starting to come back to us. He was having his breakthrough.

Then my husband and I got the news that made our hearts’ break. We found out that our insurance would not cover ABA therapy, and that it could cost us up to $60,000 dollars a year out of pocket. How could this be? His autism diagnosis clearly stated that Applied Behavior Analysis (ABA) was the top recommended therapy for children on the spectrum. Even with this heartbreaking news, we felt like we could not deny him this opportunity to thrive, to succeed, and to live his life to the fullest, just like what every other parent wants for their child. A meaning for life.

[sws_pullquote_right]Autism has a way of showing what is really important in life. It shows how strong a person can be, and just how honest and real life can get. As a parent, it changes you. [/sws_pullquote_right] We ended up selling our home and moving into a smaller house. My husband quit his government job to work for my family’s local small business. This would give us the freedom to take him back and forth to school and his ABA therapy. We have had to swallow our pride, and receive money from our families in order to get the ten hours a week he receives (40 hours is what is recommended). We also have a six year old daughter to provide for. We are so blessed to have such a tiny little girl with the biggest heart. She would do anything for her little brother.

March 7th 2017

Today is Autism Legislative Day. People from all over the state will meet at the State House to advocate for autism insurance reform. Even though we were not able to attend, my thoughts and prayers are with everyone who has put forth the time and effort to ensure our children receive the health care and therapy they so desperately need. Instead, I will be with my son, who has no idea what an impact he has had on so many lives. I will reflect on all the progress he has made over the past two years thanks to his teachers, his therapists, and most of all, the life altering therapy known as ABA. Eli is communicating, interacting with others, following directions, and even reading at a first grade level. Most of all, he is showing us his emotions. I still remember the first time he told me he loved me. That is a moment in time that I will never forget. That was the moment all the crying, the head banging, and the emotional cries for help became a distant memory. That was the day my son came back to me.

Please, my family and I are asking for help, not only for Eli’s future, but for the future of all children and adults living with autism. We as parents and advocates can only do so much. It is now up to our legislators to help pass HB284. Don’t pass it because we pressure you to do so, pass it because you know in your heart it’s the right thing to do. They say, there is no cure for autism, but I say Eli does not need a cure, just a chance, and an opportunity to shine. All children deserve the chance for a meaningful and independent life. Autism has a way of showing what is really important in life. It shows how strong a person can be, and just how honest and real life can get. As a parent, it changes you. You believe in your child so much it hurts, but that makes the rewards so much sweeter. Although autism is something that we never planned, God has given us the honor of raising this sweet little boy. He is my hero, and we are so blessed to have him in our lives.

[themify_box style=”light-blue”]ABOUT THE AUTHOR
Summer Stewart has lived in Meridianville AL all her life. After her son Eli was diagnosed with autism she started writing to cope with his diagnosis. One of her blogs was published by Autism Parenting Magazine. She then started Autism Insight of Alabama, to help provide support and resources to other autism families living in our state. She love crafting and spending everyday with her husband Brian, and their two beautiful children, Scarlett and Eli. [/themify_box]