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On the Joy Spectrum

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

My son Christian is among the 1 in 54 boys who are diagnosed with an autism spectrum disorder (ASD). We’re a military family, always moving, adapting and preparing for anything. However, there was no way to prepare for Christian’s diagnosis.

Our military life started when I was pregnant with triplets in England. Alexis, Samantha and Christian were born at 30 weeks, delivered by emergency caesarean at a hospital near London. They each weighed a little more than 2 pounds, or 7 pounds, 11 oz — 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 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. “He’s a boy. Boys are always delayed anyway. They were born early. He’ll catch up.” Oh, how I wanted to believe them but my intuition told me something was not normal. I started investigating, reading and researching.

I spoke with many parents and our family joined a new army of sorts. We began waging a war in unchartered and unknown territories — a war that besieges each child in distinct ways.

While DJ was still deployed, we received our new assignment and the children and I moved to Northern Virginia. The last time DJ saw the children they were 6 months old. Not long after DJ’s return, we received Christian’s autism diagnosis. The pediatrician told us, “I don’t have a magic crystal ball. Each child is different. What we do know is that applied behavior analysis (ABA) therapy is proven to help.”

Christian was a little over 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 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. Christian’s verbal and behavioral skills regressed. 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 3, we met Ann Eldridge of the Early Autism Project. At the time, Christian vocalized only a handful of 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 2½ years ago, we moved to Tampa and DJ deployed two weeks later for a year in Afghanistan. We started all over again, as military families always do. Christian attended VPK and started school. Ann and her team at the 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 just about 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 journeys. Our family is active in the community and autism advocacy. I established a special needs ministry at South Tampa Fellowship Church, and I’m the volunteer chairwoman of the Walk Now for Autism Speaks Tampa Bay. I’m also clinic director of a new Early Autism Project scheduled to open in South Tampa in February.

The Early Autism Project 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 who have an ASD. As a military family, we’re especially grateful for this coverage

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

Today, Christian is an active 7-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 dreams of playing football at the University of Notre Dame, his dad’s alma mater. We’re confident that with continued ABA therapy and other support, the love of his family and his own dedication, Christian will achieve this goal and any others he sets.

 

Julie Reyes is clinic director of the Early Autism Project Tampa and serves as a military and community liaison. Visit http://www.EAPTampa.com or call 888-227-7212 to learn more.

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