Different iz Just Fine

(Guest post by Loni Scovill Smith –  Loni blogs at His Apraxia Journey)

I knew pretty early on that there was something wrong with Ian’s speech. His first “words” were really just a series of grunts. He had a grunt for everything and while it was endearing in the beginning, as new sounds began to emerge, communication with him quickly became a frazzled real life version of the Mattel game Mad Gab. Ian is our third child and although I’d heard all of the excuses from others (“boys are late talkers” “he has older siblings to speak for him”), I felt certain that there was more to his speech difficulties. I talked about Ian’s speech a lot in the beginning. I think I was trying to reach out, looking for some information to grasp onto and I was met with a lot of shoulder shrug responses. To save Ian from having to endure confused looks or being waved off by others, I felt that it was my duty to explain to everyone that he couldn’t talk very well and that he just needed some patience to get his point across. My need to explain paid off one day when a woman said to me, “Ian reminds me of my grandson.” She then proceeded to tell me about her grandson’s diagnosis of Childhood Apraxia of Speech and told me to call the school district to get him some help. Being the avid, obsessive researcher that I am, I spent the next few days on the internet digging around for any information I could find on the condition. I’m sure that by the end of it I looked like one of those red-eyed, unkempt cartoon characters that haven’t had their morning coffee yet. The school district got Ian in immediately for an evaluation. They concluded that he was behind verbally and developmentally and said that he wasn’t even on the charts for his age group. At this point, you’d think I would have cried, but what they told me was something I’d already known in my heart for a long time. Instead of tears, I felt at peace. Finally, there was confirmation that he needed help and he was going to be getting that help. They enrolled him in the developmental preschool for the following Monday and started him in speech therapy. Ian’s diagnosis for Childhood Apraxia of Speech didn’t come for another nine months (in December 2009). His therapist pulled me aside after a session of therapy and mentioned that he might benefit from a communication device. The device – a Dynavox computer – was $8,000.00 and would partially be covered by insurance, but only if we had an official diagnosis. Willing to do whatever it took to help Ian, I agreed to it and his therapist formally gave him the test for Apraxia. This time, I cried, but it was out of pure relief. The diagnosis that I’d been pushing her for was finally becoming a reality. With a diagnosis comes a plan of action – a series of steps to follow to tailor his therapy specific to his condition. The therapist got the paperwork ready while I stressed over the cost of the device. I spent a lot of time praying, talking it over with my husband and confirming with the therapist that this was the best option for Ian. This is where the story gives me goosebumps because I know that God had listened to and answered my prayers. I was playing around on my iPod touch and the idea hit me that I might be able to find some apps with fun games that would help Ian with his coordination. Searching for games turned into searching for flashcards with pictures which turned into searching for educational apps until finally, I stumbled on Proloquo2Go. My fingers started to shake with excitement as I viewed the screenshots – it looked very similar to the software that the Dynavox rep had shown me. I read the reviews, went to the website and called up the therapist. She was just putting our application into the fax machine to send to Dynavox when I told her to hold it right there and then proceeded to talk for ten minutes straight without stopping to take a breath. In short, the therapist (having no knowledge of Proloquo2Go) got excited, talked to her collegues and decided that we should give it a shot. That very night, my husband and I went to Best Buy, purchased an iPod Touch for Ian and downloaded Proloquo2Go. Over the last year, Ian’s speech has improved dramatically. While he is still unclear to most, he has the basic building blocks for speech in his arsenal. A large factor in his improvement was his iPod and Proloquo2Go. “Apraxia is a presumably neurological speech disorder that affects a child’s ability to plan, execute, and sequence the precise movements of the tongue, jaw, lips and palate that are necessary for intelligible speech. Children with (verbal) apraxia are able to hear and understand words; but they have trouble with the motor skill necessary for formulating consonants and vowels into spoken words. While they may have a few words or phrases they can speak clearly – what’s referred to as “pop-outs” – they are unable to imitate what is asked of them. While researchers have several theories, the cause of apraxia is not yet known.” (The Parent’s Guide to Speech and Language Problems by Debbie Feit, pg. 66.) Different iz Good’s Gift a Voice Project is about giving kids more than words. When you donate to Different is Good, you are also giving these kids a better chance at socializing, fitting in and expressing their deepest thoughts. You’re giving them a chance at just being a kid. Did you enjoy this article?  We invite you to share it with your Facebook friends! Thank you!

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2 thoughts on “Different iz Just Fine

  1. Thanks so much for sharing. I totally know how you felt. I knew something was wrong and searched until I finally got someone that could diagnose apraxia. (yes, I feel like we went halfway around the world for it, but it was really just a trip up north~we live in Georgia and went to the Kaufman Children’s Center for diagnosis and treatment) I, too, breathed a sigh of relief when Nancy Kaufman told me that Luke had Childhood Apraxia of Speech. I had taken him to the best and knew that although our journey wasn’t over, I felt that we had answers.

    Different Iz Good and the Gift a Voice Project is to put it simply…amazing! Cheers to you for sharing your story and to Camilla for all of her hard work~!!! (and cheers to the children that inspire all of us to do more)

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