Autism Awareness Month

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According to the organization Autism Speaks, Autism “refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.[1]” Statistics from the CDC show that it is estimated that autism is prevalent in 1 in 68 children in the United States and between one and two percent of the world population has Autism. [2]The month of April is World Autism Month and in celebration of this month we would like to spotlight a very special young man. This young man’s name is JC and we had the pleasure of interviewing him, his mother, and his Caregiver at their home. JC is 15 years old and has been diagnosed with Autism. He is non-verbal for the most part but was able to convey to us, with the help of his Mother, what he loves.
Like most teenagers he enjoy movies and music. He loves all the Shrek movies, Toy Story, Monster’s Inc, Cars, and recently Madagascar. JC enjoys pizza and fruit and can ask for any items that he may want. When the weather permits, he will take walks in the park with his father Carlos. Unfortunately, JC has recently developed a fear of stairs and now his bedroom resides on the first floor of the family’s home. Hanging on the wall in the family room sits a beautiful painting that JC painted himself when he was five. His mother Mildred sat on the couch proudly talking about the painting. JC does have issues with fine motor skills so to use any writing utensil or brush is difficult for him.
JC is cared for by his mother Mildred, father Carlos, and aid Grace. We had an opportunity to speak to Grace about what draws her to working with JC. Grace came to the United States from Kenya to get care for her parents. While in the hospital one day she saw people in uniforms wheeling patients around and questioned who they were. She was told that they are those patients caregivers and that’s when she was drawn to the profession of helping other people. Grace’s parents went back to Kenya and Grace stayed in the United States and began working with the elderly in need. She met her husband who had multiple children whom were diagnosed with autism which is what brought her to working with children. Grace loves working with JC and said that they have a lot of “nice afternoons” together. She stated that she “feels satisfied that she makes his day nice.” Grace has been with CareGivers America for four years and working with JC for 11 months.
Gace discussed a little about her home in Kenya and how children with Autism are treated. She said that there are many children in that country with Autism but for the most part they are ignored. Health care and treatment of children with autism is completely different from what is experienced in the United States. Parents are sadly not educated on treatment and handling of Autism and children are left isolated unless the family is well off. Grace was saddened that she was not able to help the children in Kenya and felt drawn into the Industry.
JC’s mother sat proudly next to her son and talked about the challenges that JC and the family experience on a daily basis. Mildred stated that the most challenging part of his care is the communication and frustration that comes from that. JC tries to communicate his wants and needs to his family and aid but is unable to express it as you or I would thus making it difficult for the family to understand sometimes what he needs. At times certain situations cause JC to have episodes. After JC is able to be calmed down it is up to Mildred and her husband to figure out what triggered his episode. One of these instances is when a change in routine comes around. That creates instability for JC so Mildred and the family try to keep as much of a routine as possible
Mildred would like everyone to know that living with and working with Autism is challenging. Families who have a family member with autism are unable to do normal family activities such as family vacations. Mildred said that what people don’t understand either is that people with autism understand everything. They easily pick up on emotions and fears and with that she hopes that the work that JC does with Grace will enable him to be more independent with certain aspects of his life. The family is “hyper vigilant” and alert to anything that might happen. Just recently Mildred had to remove any items from their family room so there were no injuries to anyone during one of  JC’s episodes.
Autism Awareness Month was established to promote awareness and acceptance of what Autism is. Together we can help children, like JC, and their families help live the highest quality of life possible. We hope this article provided some insight into Autism, the families, and the Caregivers that take care of their families every day. To learn more about Autism visit autismspeaks.org or autism-society.org.
[1] “What Is Autism?” Autism Speaks, 31 May 2012, www.autismspeaks.org/what-autism.
[2] “Autism Spectrum Disorder (ASD).” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 12 Feb. 2018, www.cdc.gov/ncbddd/autism/data.html.
 

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