Navigating Autism: A Mother’s Story

Navigating Autism: A Mother’s Story

Date: December 1, 2013
Author: Julie Reyes, Military Family Liaison, Early Autism Project
Source: Tampa Bay Parenting

They say that if you’ve seen one child who has autism, well, you’ve seen one child who has autism. While each child is unique, families with children who have autism share common challenges, goals and dreams – and they overcome obstacles in their own unique way. We are one of those families.

My son, Christian, is among the one of every 54 boys who has been diagnosed with an Autism Spectrum Disorder (ASD). We’re a military family, always moving, adapting and prepared for anything. However, there was no way to prepare for Christian’s autism diagnosis.

Our not-so-normal military life started when I was pregnant with triplets while we were assigned for duty in England. Alexis, Samantha and Christian were born at 30 weeks, delivered by emergency caesarean section at a hospital near London. They each weighed a little more than two pounds, or seven pounds, 11 ounces – the weight of a typical baby – combined. They spent nearly two months in the Neonatal Intensive Care Unit before we could bring them home.

Six months later, we returned to the United States. The babies and I lived with my 75-year-old father-in-law in New Jersey while my husband, DJ, was deployed in Iraq.

When Christian was a little over 18-months-old, I started seeing the signs. Instead of racing cars, he would just spin the wheels or stare at the blinking lights. He didn’t play typical baby games or even respond to his name. Well-meaning friends and family tried to comfort me by offering explanations such as, “He’s a boy. Boys are always delayed anyway;” or “He’s a multiple;” or “They were born early, he’ll catch up.” Oh, how I wanted to believe them, but my mother’s heart and intuition told me something was not normal. I started investigating, reading and researching.

I spoke with many parents facing their own personal struggles at different stages and our family joined a new Army of sorts, and began waging a war in unchartered and unknown territories, a war that besieges each child in its own unique and distinct way.

While DJ was still deployed, we received our new assignment and the children and I moved to Northern Virginia and prepared for his return. The last time DJ saw the children they were six-month-old babies; they were 18-month-old toddlers when he returned. We began to re-establish our family. Not long after DJ’s return, we received Christian’s autism diagnosis from a very wise developmental pediatrician who told us: “I don’t have a magic crystal ball, no one does, and we don’t know exactly what will help. Each child is different. What we do know is that ABA (Applied Behavior Analysis) therapy is proven to help and ABA combined with speech and occupational therapy are typically prescribed and can help.”

Christian was a little over age 2 – and not speaking at all.

So we mobilized to cobble together a program of all the therapies that would give our son the best possible chance for a normal life. I threw myself into learning everything I could about ABA therapy. I enrolled in the Florida Institute of Technology ABA program, and I continued to read and research. I attended every speech and OT session, and so did Christian’s sisters. This was a family journey.

With ABA and other therapies, Christian made amazing gains in only six months.

Then, we moved again, to Augusta, Ga. I thought I had prepared well, but my plans didn’t survive the first contact with the enemy. Our Augusta ABA program, the cornerstone of our therapy plan, was not as effective for our family as the program in Virginia, and Christian’s verbal and behavioral skills regressed. But we wouldn’t give up, so we searched for another ABA provider who would accept our insurance and piece together another team to help Christian and our family.

When Christian was just a little over 3 years old we met Ann Eldridge of Early Autism Project. At the time, Christian vocalized only a handful of single words and had many behavioral challenges. We began working intensively with Ann, her team, our therapists, family and caregivers, and Christian made great progress. He attended preschool.

About two-and-a-half years ago we moved to Tampa, Fla., and DJ deployed two weeks later for a year in Afghanistan. We started all over again, as military families always do. Christian attended Voluntary Prekindergarten Program and started school. Ann and her team at Early Autism Project continued working with us – and they still work with us today.

As our understanding grew and developed, the war transformed from a personal war to a global one. It wasn’t about just my family anymore. I wanted to help others navigate their journeys toward hope and opportunity through autism support, education, information, shared resources and experiences.

We know there are many families with a loved one who has autism and we hope our experiences can help them navigate their unique journeys. Our family is active in community activities and autism advocacy. We participate in support groups, I established a special needs ministry at South Tampa Fellowship Church, and I’m the volunteer chair of the Walk Now for Autism Speaks Tampa Bay. I’m also clinic director of a new Early Autism Project Clinic scheduled to open at 3217 S. MacDill Ave. in Tampa in February.

Early Autism Project currently provides services to Tampa Bay area children and families in their homes, and we know many families will welcome the opportunity to participate in a clinic setting. ABA therapy is covered by many private and government insurance providers, including TRICARE, for children between the ages of 20 months and 21 years who have an autism spectrum disorder. As a military family, we’re especially grateful for this coverage.

The impact of ABA and Early Autism Project on our son’s life, on our family’s life, is immeasurable. We face every challenge and celebrate every victory as a team.

Today, Christian is an active seven-year-old. He’s a first-grader who loves to ride his bike, plays a mean game of Uno, does an excellent job with his math homework, loves maps and is a great navigator. Christian also has a dream – to play football at the University of Notre Dame, his dad’s alma mater. We’re confident that with continued ABA therapy and other supports, the love of his family and his own dedication, Christian will achieve this goal – and any others he sets.

Julie Reyes is director of the Early Autism Project Tampa clinic operations, including supervision of Board Certified Behavior Analysts (BCBA), and serves as military and community liaison. To learn more, please visit www.EAPTampa.com or call (888) 227-7212. Julie Reyes can be reached at (813) 362-2144 orjreyes@earlyautismproject.com.

Published in the December 2013 issue of Tampa Bay Parenting Magazine.

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