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  • Approved for CNN

  • Click to view AngieRonS's profile
    Posted March 28, 2014 by
    AngieRonS
    Location
    Huntington, West Virginia
    Assignment
    Assignment
    This iReport is part of an assignment:
    Communicating through autism

    More from AngieRonS

    Communication it's just about using words

     

    CNN PRODUCER NOTE     AngieRonS says her son is now 100 percent verbal, though people who haven't talked to him before may have trouble understanding him. She coaxes him into activities he doesn't enjoy, like brushing his teeth and going to bed, by role-playing with Super Mario characters. "He calls me 'Dixie Kong' and he is 'Donkey Kong' around the same time every evening. He told me last night, 'Thank you Dixie Kong for getting my blanket,' and you could tell he was so tickled to role-play that with me."
    - dsashin, CNN iReport producer

    Trey’s first words were “dog”… he then learned “dad”… and then it stopped. Even those words were gone… replaced with grunts and screams. Not being able to communicate was just one frustration … but one that was directly or indirectly related to so many issues. It seems so long ago.

    I remember at an early age we eventually strated introducing PEC’s cards. Trey could understand us, but he had minimal way to communicate back… it was a one-way-street. PEC’s cards helped, but they had their limitations.

    It wasn’t until Trey was 5 or 6 that his language started to surface. It’s been a slow progression; he’s been receiving speech therapy since he was 18 month old. Even today at 11, he has 2 hours of private speech and then he also receives speech therapy through his school.

    I loved seeing the video with Ron Suskind… so much so, I kinda used the theory that night when trying to get Trey focused and ready for bed. He too loves movies, and went through a “Thomas the Tank Engine” phase… but now he is obsessed with Mario Brothers. Any parent (not only one of a child with special needs) uses a child’s interest to help drive behavior… for us, a reward for a special achievement might result in a new Mario character stuffed animal, but I never thought about using it for communication.

    Behavior issues has been our latest struggle, transitioning to different activities, etc. So that night I used his Mario characters to “talk” to him and transition away from TV timeand into brushing teeth and getting ready for bed. His eyes sparkled, as if he was living in the magical world of a Mario game, and just like that he gleefully started to get ready for bed. I was amazed… why hadn’t I thought of this before?

    We’re fortunate that Trey can now communicate, while it is still sometimes difficult to understand and his sentence structure may be limited, we know we are blessed that he continues to improve.

    Communication isn’t just about using words, for us it’s about us using the right words with him, and communicating frequently. Our tone, the words we use, etc can make or break how Trey reacts to us. We’ve learned this the hard way, and it’s so easy to get wrapped up in life and without thinking, forget to cue him that he has 5 minutes of TV time left, vs. “time up” without warning. Trey can go from calm to nuclear meltdown in 5 seconds flat… it is possible in those 5 seconds to talk him off that ledge (again communication)… but past that, there is very little you can say or do… just wait out the melt down. At times it’s horrific, as if he is possessed, and through trial and error we’ve learned he cannot control this, as frustrating as it is for us, he cannot control it. But when it is over, the sweetest child with his head down low almost always says “sorry mom… sorry I yelled at you and hurt your feelings”… those words (communication)… I know he means it… and it is enough to melt your heart.
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