What does hope sound like? Is it a galvanizing chant of a crowd or a word of encouragement whispered in the ear? For Ron and Jennifer Eivaz it sounds like a single word uttered by their son David. It doesn’t matter what the word might be — they are all precious to the couple for the sheer fact that for the first half of David’s life the prospect of him being able to use and grasp language was an open-ended question.
As first time parents, Ron and Jennifer were concerned that their toddler wasn’t talking like the other kids his age, but were told by others to relax and that David would speak when he was ready. When David reached four years old without uttering a single word the couple’s concern had grown into a full-blown fear.
The Eivazs first turned to their doctor, who Ron said was baffled by David’s silence. Next the couple tried specialists with the school system, but still an answer was not forthcoming. Ron calls it providence that they happened to get a referral to a private therapist, who just happened to have an opening. It only took one meeting with David for the therapist to recognize the problem. David was one of a rising number of children diagnosed with childhood apraxia of speech, also known as CAS. In CAS, the brain’s neuropaths that control the process of speech, like the movement of the jaw and tongue, have problems coordinating the muscle movements needed to speak. Essentially, a child like David knows what he wants to say but his brain isn’t sending the message on how to get the words out.
“When we got that diagnosis it was like a whole new world opened to us,” Ron said. “I hate to think about where we would be now if we hadn’t of had that meeting.”
CAS is often misdiagnosed as autism or a mental development disorder, according to the American Speech Language Hearing Association. CAS is correctable with intense and ongoing therapy that focuses on the planning, sequencing and coordination of muscle movements needed for speech.
The Eivazs got David into therapy five days a week. They enrolled him in mainstream kindergarten, where his frustration at not being able to communicate like his schoolmates mounted.
“He was so frustrated as a young boy and that frustration came out as behavior problems,” Jennifer said. “He wanted so badly to talk and couldn’t and that caused a lot of anger.”
“Even now, he doesn’t like to watch old videos of himself because he says he remembers wanting to say things and not being able to get them out,” Ron said.
Half way through his first grade year David was transferred into a full-time speech and language class, where he began to show immediate improvements. In one year he advanced two grades and is now in the third grade.
Even with regular therapy the degree of progress can vary with each case of CAS. Some children will have long-standing difficulties with language, especially when it comes to learning how to read, spell and write.
“This has really shown us how much language we take for granted,” Jennifer said. “He has to learn every single part and the difficulties bleed into everything.”
The Eivazs are ministers at Harvest Christian Center and say they have found an unending amount of support and sage advice there, especially on celebrating every victory, whether it’s small or large. It was with this mantra in the back of her mind that Jennifer perused a wall of accomplishments in David’s classroom during a recent open house. Her eyes fell upon a short story about a frog and her heart jumped for joy when she saw it was her son who had authored the story.
“It was clever and clearly written,” Jennifer said. “It was just instinct for me to grab it off the wall and hold it close. It just showed that we are getting somewhere.”
“Froggy Battles the Dragonflies,” created and written by 9-year-old David, tells the story of Froggy and his adventurous day at the lake.
For Jennifer and Ron, the short story was a sign of progress that years earlier seemed unlikely to reach realization.
“I wanted to do something for David to prove to him that language was not going to be a barrier for him. That’s when I got the idea to turn it into a book,” Jennifer said.
She created the artwork for the book and sent it out to be printed. The family is planning a book signing and possibly a reading at the church once the book comes out.
“Froggy Battles the Dragonflies” is only 61 words, but each word holds a wealth of hope for the Eivaz family that David’s life will be like an open book that he will pen in with the details each and every day.
“It has been a difficult journey,” Jennifer said. “I used to be unsure of what his quality of life would be like, but now I know it is going to be extraordinary.”