Finding His Voice

It’s been one of those weeks where you have to sit back and think really hard about the good because you are nervous about all the could be bad with the new.  I know that makes no sense but it will after you finish reading.  This Wednesday will be 2 weeks we have introduced Cody to his new communication device on his iPad called Proloquo2Go. Might be asking what this is.  Basically, it’s an electronic version with bells and whistles of a Picture Exchange Communication (PEC’s) system.  It’s an Alternative and Augmentative Communication (AAC) application for iPad and iPhone’s.  It can provide a “voice” for people who cannot or have difficulty speaking. It’s a complete communication solution providing many natural sounding text-to-speech voices, three complete research-based vocabularies, over 10,000 up-to-date symbols, and the ability to fully customize vocabularies to meet the needs of individual users from beginning symbolic communication to full literacy.

My cowboy using his Proloquo2Go.  Willie Nelson wore that hat too.

Our hope for Cody, is this will not replace his voice but increase his vocabulary to continue to learn and develop.  We pair a vocal with EVERY request from his iPad.  Right now, the functionality of how he requests for something on the iPad, he has caught on very quickly.  In fact, we actually slotted a week for him to get comfortable with carrying his iPad around 24/7 and using for these requests.  After just a few days, he had mastered and now we have already started adding sub folders of different options such as food, TV shows and colors.  We have even added the action words, “I want” and “help.”

Saturday, I was voicing my concerns with a very close friend of mine at Cody’s equine therapy.  I was basically telling her  that this all makes me very uneasy yet excited all at the same time.  I would never want the iPad to replace Cody’s voice but at the same time, I have to ensure Cody is learning every day and continuing to developmentally grow. With growth and development can also add frustration and confusion if you are not able to speak.  We have already seen a few times where he gets frustrated if we do not understand what he is wanting. It really is a catch 22.

My fear is if I have a speech-generating device, it will prevent Cody from finding his voice. I lose sleep that if he is touching a screen to make a request rather than learning to speak. It’s also a hard cookie to swallow knowing that moving to a communication device means that your therapists may give up on the possibility that Cody will ever speak independently.  All these thoughts go through your head and it makes you very uneasy.

I was researching this past weekend once the worry started settling in some and found that  there is clear evidence that Proloquo2Go and other devices actually help children learn to speak. This article was what I needed.

Autism Speaks funded a pilot study, enrolling 60 children with autism, ages 5 to 8 years, who were nonverbal or minimally verbal (fewer than 20 words).

All the children participated in a play-based intervention that encouraged the use of spoken language. To measure the added benefit of a speech-generating device, the researchers used it with half the children from the very start of therapy.

At the 3-month mark, the researchers measured the children’s progress. Those who were gaining language skills continued on course. The researchers added the communication device to the therapy of children who were responding slowly without it. At the end of six months, all participants gained spoken language. However, the children made earlier and more rapid progress when they were allowed to also use the speech device.

Most encouraging of all perhaps, this study helped dispel the belief that children who use speech-generating devices will stop making gains in spoken language. It showed just the opposite.

Why did the speech-generating devices help? We don’t know for sure. But it may be that the speech sounds produced by the device provide the child with a model for imitation. Many of these devices pair pictures with sounds. (See example iPad above.) This may help reinforce the sound of the word with the child’s mental representation of the object or activity.

Bottom line, I believe that a speech-generating device will provide your son with a “voice.” And that “voice” can both encourage him to communicate with others and provide him with a model of the sounds he needs to imitate to develop spoken language.

Going back to the start of my opening sentence, “It’s been one of those weeks where you have to sit back and think really hard about the good because you are nervous about all the could be bad with the new.”  Given that Cody has rapidly picked up on how to use the Proloquo2Go and reading this study, it again eased my never stopping always processing brain to give his communication device a full shot.  Imagine all the possibilities this could bring him? Imagine these possibilities being executed quicker by having a communication device?  Those two things alone, are reason enough.


Look who got a haircut……

Published by mamalamaneustupa

Bio My name is Shelley Neustupa. I am a mother of two cool boys and a wife of 22 years to my high school sweetheart. My oldest son attends the University of Oklahoma. Boomer! My youngest is in 2nd grade and was diagnosed with Autism and Mixed Receptive Expressive Disorder at age 2. Since his diagnosis, I promised him I would advocate and educate as hard as he works each day in therapy. I began writing and have been able to touch many parents that may be new to this journey providing them with actual experiences (not candy coated), support and resources through my entries. Writing is my therapy and my hope one day that my nonverbal son will be able to take these diaries and speak about his own journey and how autism relates to his own experiences. Who knows he and his older brother may become National Speaker’s one day? Come along on our journey to better understand our lives through the eyes of a boy with autism, his Skilled Companion dog Jude, his big brother (and best friend) and mom and dad. My raw vulnerability captures the everyday moments of our journey and will bring even more awareness. A week does not go by where we do not learn something new about ourselves and I want to share these chapters with you. My Sons Undeniable Strengths… Extremely smart and figures out things quickly. Has a memory that allows him to remember more things than I could ever hope for. Persuasive by his personality and sheepish looks. Overabundance of stamina and strength. Loves the outdoors. Enjoys life and always has fun with an unforgettable smile. You can find us here: Writer: Autism Through His Eyes Facebook Instagram YouTube Pinterest Canine Companions for Independence News Interview Cody and Skilled Companion Jude - Our Story

One thought on “Finding His Voice

  1. Cody has a very inquisitive mind. While he is non-verbal at the moment, he will most likely be able to
    master every challenge like the Prologue as he has done with other challenges. Thank you for educating
    us on this new technique. And I truly feel good things will come from it.

    Liked by 1 person

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