Sunday, February 3, 2019

About Eli

In an attempt by our church to serve us better, Kevin and I were asked by one of our pastors to answer some questions about our son Elijah. We are humbled and blessed by this kind gesture and hope typing out our thoughts on this blog may help other special needs parents and the churches who love them. 

A Surprise Blessing 

Kevin and I married in January of 1997. We both had a strong desire for children, but God did not answer that prayer for some time. Finally, after five years of infertility and two miscarriages, Kevin and I were blessed with three beautiful children - Katie, Owen, and Audrey. During my pregnancy with Audrey, it was discovered that I had a serious blood clotting disorder and we were advised to avoid any future pregnancies. Imagine our surprise to discover that Elijah Ray was on the way seven years later - and just in time for my 40th birthday! By the grace of God, Eli and I both made it through the pregnancy and childbirth safely despite the risks involved.


ASD Diagnosis 

Our journey into the land of autism is pretty typical when compared to the experience of others. Eli's development was seemingly on track until Dr. Dave noticed a language delay at Eli's 18 month pediatric checkup. Because Eli was the baby of the family, we assumed he was delayed because everyone was meeting his needs with just a whimper on his part. Why talk when you don't have to? But when no progress had been made by his 2 year checkup, we agreed to get the ball rolling with speech therapy through the Tennessee Early Intervention System.

At that appointment the word "autism" was mentioned. Kevin and I knew almost nothing about Autism Spectrum Disorder, but when we looked at a list of early indicators we saw many behaviors listed that we had observed Eli doing. We thought these were just "quirks." One example is self-stimulatory behavior, or "stimming." Some children flap, spin, rock, or repeat words. Eli had been visually stimming for some time, which we thought was his attempt at clowning around. Here is a video of early visual stimming, before we knew what he was doing:



After researching and talking to others, we knew that Eli had Autism Spectrum Disorder. We are currently pursuing a formal diagnosis for the sake of his education as he approaches Kindergarten.

Education, Therapy, and Treatment 

For that first year, TEIS came into our home once a week for speech therapy and once a week for developmental therapy. When Eli turned 3, he "aged out" of TEIS and was given the option of attending Tipton County Preschool for Exceptional Children. Although we homeschool our three older children, Kevin and I prayed and thought about it and decided to put Eli in TCPS. It was the right decision for our family. We could not be happier with the therapy, education, and love Eli has received in his two years there. Our son has progressed so much, and I have learned much of what I implement in our home by observing Eli's teachers and asking lots of questions. Eli will graduate from preschool in May and begin Kindergarten in a comprehensive development class (CDC, or SPED) at Atoka Elementary this fall.


In addition to the education and therapy Eli receives through the public school system, we do many things at home to help our son. Eli follows a gluten-free, casein-free diet (basically no wheat, barley, rye, or dairy). He takes a vitamin supplement, omega oil, and probiotic daily. We have taught Eli to tolerate several frightening experiences such as getting a haircut and going to the dentist by breaking the process down into the smallest possible steps and repeating daily. Eli uses an iPad with a communication app called Proloquo2Go. This device allows him to type what he wants to say using words and pictures, rather than trying to string words together in his brain. We also use words, pictures, and routines to help with other areas of struggle, such as sitting still in church or dealing with a change in our daily schedule.


A Different Perspective

Symptoms of ASD are difficulty with communication and interaction with other people; restricted interests and repetitive behaviors; and other symptoms that hurt the person’s ability to function properly in school, work, and other areas of life. Autism is considered a spectrum disorder because a person can be affected to varying degrees in each of these areas.

Eli, for example, has difficulty communicating orally (expressive language), but he can usually understand what someone is saying to him (receptive language). Most of his communication is limited to making requests or scripting - Eli can quote entire movies. A humorous example of how Eli can use scripting to communicate happened last year during corporate prayer at church. Eli loudly quoted a line from his then-favorite show, Wow Wow Wubzy. "BORING, BORING, BORING!" Our son borrows the words of others when he can't come up with them himself. (And we pray that he won't always see corporate prayer as boring!)

Besides language delays, we also struggle daily in many other areas, such as potty training (we're in our third year), self-care (he can't dress himself yet), meltdowns with any change in routine, sensory seeking behavior (constantly in motion), and interaction with peers (almost non-existent).

I want to close with a word about Eli's strengths. He is constantly surprising us with his intelligence. He's been reading for some time now and can count in multiples of 2, 3, 5, and 10. He is pretty obedient for a 5-year-old and picks up his toys like a champ. And the thing I love best about Eli is that he is full of JOY! The simplest things make him happy, and he helps us see the world from a different perspective.

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