The importance of being Caleb

by Akasha Orr, Administrative Coordinator

Caleb swimming away.

I remember getting the call from my Mom… The worry in her voice when she said my beautiful, sweet 3 year old nephew Caleb, had been diagnosed with Autism. My immediate response was disbelief, confusion and anxiety as to how his life would be different from his older brother Ahmad. Born just one year apart, they are each other’s shadow. I wondered if things would change. My fears quickly turned to compassion and a desire to learn as much as I could… a desire to shelter Caleb from criticism, misunderstanding and the taunting of other children. I could only imagine the pendulum of emotions my brother and sister-n-law experienced. The patience it would take to raise 4 boys, one of whom was now being labeled as having “special needs.”

Caleb began early intervention through the Individual Education Plan (IEP), which emphasizes a tailor made education program with specific goals and milestones in mind for each child. One of the first things they had to establish was a form of communication, since Caleb was still non-verbal at 3. He began learning sign language and a picture symbol system called PECS. Each day, his teacher would offer him a snack by showing him a picture of a banana and a picture of cookies with the symbols for ‘yes’ and ‘no’ on the cards. The teacher would ask Caleb if we wanted the banana or the cookies and he wasn’t given his snack until he chose which he wanted by pointing. While this method was effective at school, it proved problematic at home. Many times his parents didn’t have a symbol for a particular word. What then? How would he continue to develop at home if the system wasn’t comprehensive? 

Caleb playing with the fountain at the park.

His parents began to take matters into their own hands, limiting dairy in his diet and reading books on Autism to seek out advice on ways to empower Caleb and themselves. They introduced Caleb (affectionately nicknamed: KK) to the computer and visited sites such as Sylvan so he could begin learning the alphabet. Little KK turned out to be very computer savvy by learning what words begin with what letters and how to pronounce them! In no time, he had clicked his way through the various levels and eventually learned to read. The most frustrating part of KK’s schooling experience, however, has been the standardized test his school’s administrators give him. Despite all of his skills and progression with language, at 7 years old, he cognitively tests as a 3 year old based upon their scoring system.

Last Christmas while visiting family, I had the chance to watch KK in action. He operated the computer’s mouse like a pro, quickly navigating through his favorite websites, entertaining me with songs he knew and every now and then, affectionately pressing his hand to my hip as if to tell me to ‘watch’ as he moved through the interactive games and stories. I’ve marveled at his ability to quite keenly express what he wants, what’s frustrating him and what he needs from me. I’ve also watched him play couch commando with me, turning the t.v. channel from what I was watching to what he wanted to watch! 

Caleb loves trains!

He’s a normal kid in almost every way: playing with trains, video games and throwing tantrums when he doesn’t get what he wants. My sister-n-law shared a great story with me a few days ago… She and KK went to the store to pick up a plunger. Just like every little kid, KK wanted to help his mom so he carried the plunger as she continued shopping. Then, in the check-out line, KK chose a Snickers bar and a bag of BBQ potato chips and his mom waited until he verbalized to her that he wanted the snacks before agreeing to buy them. The surprise came when the teller said “Hello” and KK gently touched his hand and said ‘Hello, how you doing?” 

I see the spark of creativity in him and celebrate his light in my life. I see KK’s individuality instead of his difference. His uniqueness… his inherent Caleb-ness! I will always feel very protective of my adorable God-Son, though at the same time, harbor a deep knowing that whatever challenges arise, Caleb is not only able to face them, but ready to surprise us with just how capable he really is.