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    Posted June 18, 2014 by
    cindymomof3
    Location
    Colorado Springs, Colorado
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    How my son with special needs has changed my view of the world.

     

    CNN PRODUCER NOTE     Cindy Colwell shared the story of her son Wyatt. He's 11 years old and will be starting the sixth grade in August 2014. He was diagnosed with Quadriplegic cerebral palsy, a condition that affects all four of his limbs, allowing him to only have movement and functionality in his head.

    Two years ago, he started using a head switch called Nova Chat. It's an application on the Samsung Galaxy tablet that allows him to communicate with his family. So he can tell them when he is uncomfortable and can even have conservations with his friends. 'He can make people laugh and shock them,' Colwell said. 'He loves being part of the conversation at the dinner table. He gets to participate in his life and make decisions where before he just listened and we made all his choices for him.' She loves finding ways for Wyatt to be independent especially now that he is becoming a teenager.

    She says these past 11 years with Wyatt has taught her a lot about herself too, like being able to handle a lot stress to speaking up for her son. 'Life can change at any time,' she said. 'This is not the life I would have chosen, but most of the time I am happy to be a part of the special needs community.'

    For new parents with children who have special needs, she says don't shut the world out. 'Get your kids out into the world and into school. Give them the benefit of the doubt,' she said. 'Just because their body does not work does not mean they do not understand everything going on around them.'
    - Jareen, CNN iReport producer

    My son Wyatt and his twin brother Evan were born 11 years ago. I had no idea how much my world was about to change. The boys were delivered at 27 weeks gestation. They were being effected by Twin to Twin Transfusion. We were told Wyatt had suffered a significant brain injury before delivery. Over the years Wyatt has been diagnosed with Severe Microcephaly, Spastic Quadriplegic Cerebral Palsy, and Cortical Vision Impairment. He is nonverbal, uses a wheelchair, and needs a feeding tube for the majority of his nutrition.

    We knew very early on that Wyatt understood everything going on around him. We tried to involve him in everything with his older sister and twin brother. He was very frustrated the majority of time because of his inability to express his wants and needs. Wyatt has been involved in many therapies starting his first year of life. This includes Occupational Therapy, Speech Therapy, Physical Therapy, and HIPPO (horseback riding ) Therapy. When Wyatt was 5 years old he was introduced to assistive technology. This started with switches to learn cause and effect. Wyatt started sharing recorded messages and controlling a computer program. We then worked with Wyatt to learn to express yes and no with eye and head movements. He was empowered and his behavior issues from frustrations were becoming less. He then received his first communication device. The communication process he uses is called auditory scanning. It involves a head switch and a personal speaker. His device scans the options in his personal speaker and he uses the head switch to make his selections. It took a lot of encouragement and creativity with programming for Wyatt to be motivated to talk with the device. It is certainly not an easy process for him to tell you what he has to say. We found having funny phrases and opportunities for him to make people laugh are the best motivators.

    Wyatt is now 11 years old and can tell you almost anything with his device. He will occasionally use word prediction and say something that just shocks us. A few months ago he was waking at night and crying until I went into his room. I was pushing him into his room one night and he used word prediction to say "Ghosts?" He had seen a scary movie preview on TV right before the waking at night began. We had a discussion about that being a movie and not real. He stopped waking at night and crying. I may never have figured out what was upsetting him without the aide of the communication device. His ability to communicate his knowledge and understanding helps other people see what we have always known. Wyatt is aware of everything. His brain functions to think, learn and feel. It just simply does not work to control his body. If you just look at Wyatt you may not think he can participate in life. With the help of adaptive equipment and assistive technology he can participate in many things other 11 year olds enjoy.

    Wyatt participates in a talker group. All the kids communicate with assistive technology. Going to group is his favorite activity. The kids have conversations, do science experiments, plan parties, and even go shopping together. Wyatt has friends and he loves school. It has been an ongoing battle for the public school system to see Wyatt as someone capable of learning. I wish the world would understand how hard parents have to work to have their kids with special needs included in school. It is heartbreaking to see your child placed in a separate room away from the typical students. Wyatt wants to be in the regular classroom. He has recently started the Charlotte's Web strain of medical cannabis. He is much more comfortable and able to concentrate. We have been successful in reducing his other medications and he is doing amazing. Last year he was finally fully included in his regular classroom. The difference in his excitement about school was very evident. It was very clear that it was the place he needed to be. I wish everyone could see what I see in Wyatt.

    I was a very shy person before I became Wyatt's mother. I very rarely spoke up or brought attention to myself. I now question doctors, school administrators, and anyone making decisions that will effect Wyatt's quality of life. Now I speak in front of groups of other parents and professionals about the difference we can make in the lives of children with special needs. Being Wyatt's mother has completely changed my view of the world. Being the parent of a child with special needs is difficult. We juggle therapies, unexpected hospitalizations, raising our other children, endless school meetings, and researching ways to improve our child's quality of life. It also brings excitement and joys we would not have experienced had we not been handed this life.

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