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    Posted April 6, 2014 by
    Louisville, Kentucky
    This iReport is part of an assignment:
    Communicating through autism

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    My non-verbal son needed a Voice


    One day while ordering food for my son Alex at a restaurant a sad thought came to me. The thought was how sad it was that Alex could not tell me what he wanted to eat. My family was eating out. Everyone was deciding what they wanted to eat . Alex could not verbalize to me what he desired to eat. Now, I knew that my son really liked pizza but, what if that day he wanted chicken nuggets. My son Alex had no way to communicate that he wanted pizza or just what food he was craving. I started to think about ways to help Alex communicate his needs since he was non-verbal. Alex’s school was not interested in teaching him to type or really any kind of communication system. For many years I had taken Alex to speech therapist and asked the speech therapist to help me find some kind of communications system but had no luck. So realizing Alex needed an Annie Sullivan (Helen Keller’s teacher) someone who believed in his abilities I decided it was up to me to help him. I needed to help Alex now before it was too late.


    Alex had always amazed me with his ability to bring a movie box to me asking for a particular movie. But what impressed me the most is that if I handed Alex the wrong movie he knew it was the wrong movie and he would push the movie away. Let me give you an example. Alex may hand me a movie box with a picture of Scooby Doo and the title Scooby Doo and the Reluctant Werewolf but if I tried to hand him the movie Scooby Doo goes to Hollywood Alex would not accept the movie. Alex would push the movie away with no picture on it. Alex did not accept the movie until I gave him the right movie title. So it occurred to me Alex could read because on the actual VHS tape itself there was only words no pictures. Then I thought maybe Alex was reading with symbols. Noticing the way the words were written it occurred to me that Alex maybe recognizing symbols in the writing. Let me give you another example. We all use symbols in daily life such as symbols like KFC which stands for (Ky Fried Chicken) or the Bulls eye symbol for Target stores.


    Next I started researching ways to teach Alex to communicate using pictures. I found a system called PECS or Picture Exchange system. I took a picture of Alex’s drink cup, laminated the picture and put it on a magnet on the refrigerator. Then while we were eating I would lay the picture on the table and keep his special Sippy/drink cup where he could see it but out of his reach. Next when Alex tried to reach for his cup I would hand him the picture. Shortly Alex realized if he wanted a drink he needed to request a drink by handing me the picture of his drink cup. Alex picked this up so quickly that soon I moved on to pictures of his favorite foods, movies, etc. During the day the drink and eat pictures remained on the refrigerator. Alex would take the picture off the refrigerator and request a drink or eat/food picture. I would say within a few months he demonstrated his ability to understand the PECS system so I created an entire book of PECS.


    Today Alex uses a dynavox communication device loaded with PECS pictures to communicate his needs.
    I wanted my son to have a voice because his thoughts were important to me. I have always believed in Alex’s abilities despite the roadblocks from educators, and speech therapist. Currently I am working on teaching him to type his Alphabet through a free program by ABC mouse on keyboarding skills. After teaching Alex his alphabet years ago on a V-tech Smart board I felt he may be able to learn to type on a computer. Again his teachers have said he will never do this. Good thing I did not listen to the educators. My son who has Down syndrome and Autism is non-verbal but that does not mean he cannot learn or understand. Alex just learns a little slower and differently than his typical peers. When he was young he was tactile defensive so even though I tried to teach him sign language he would not try that. Recently Alex made the Honor roll at school and I am so proud of him.


    I always put myself in my son Alex’s shoes and thought to myself, What would I want someone to do for me if I was non-verbal? I would want someone to never give up on me. Alex’s school now is working on teaching Alex to type his alphabet at 18 yrs of age and he also uses a dynavox communication device to communicate his needs at school. To get Alex’s school team to consider letting Alex use a dynavox communication device at school I first showed them a video of Alex using his device. Next during Alex’s school team meeting I requested an Outside Independent Device Trial Evaluation. Then I requested that the evaluator come to our next school team meeting to read her findings on trialing Alex on different devices. The school district paid for the evaluation and decided they would let Alex use a communication device at school. Alex’s school at first had Alex working on a Nobi communication device which he used just as well as the Dynavox but eventually let him use the Dynavox. You are your child’s best advocate just do not give up on what you believe your child’s abilities are. If I had not believed in my child he still would not have a way to communicate.

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