My son, Eloy, came into the world on the most romantic day of the year, Valentine’s Day. His name was already set. As per family tradition, his second name had to be Eloy, like his dad, granddad, and great granddad.
Eloy was the cutest baby boy and seemed to develop normally. His speech was a little delayed compared to his older sister, but no one thought that was strange as his sister started speaking abnormally early. We thought Eloy was super smart. Although he was not able to say much, he would do things that other 18-month-olds would not do. Fascinated by the television, he figured out that by opening the bottom drawer of the chest where the television was placed, he could reach the on/off button. My son was a genius, right? He was always exploring and looking for bugs, sticks, etc. He was a budding archeologist, right?
At home, we spoke the local language of Aruba, Papiamento. While Eloy was able to say some sentences in Papiamento, his intonation was strange. But when he got a little older, he was able to hold conversations in perfect English. He was close to his American grandmother who only spoke English to him and he picked that language.
Eloy never cried a lot as a baby, although he suffered enormously from a middle ear infection. He would get a fever, and be just as happy and just as hyper as always. The only time he would yelp was when he had to have his hair cut, and he was especially bothered when they would cut the hair around his ears. I kept on telling my husband that there was something off with him. No one took me seriously. When Eloy was three, I scheduled a psychologist to test him, but my mother convinced me not to go through with it. She believed that Eloy was just very smart and that he would eventually calm down since I was also a hyper child.
He charmed his kindergarten teacher, bringing her flowers and clay dinosaurs he made, day in and day out. Yet, he was different. His teacher loved him and allowed him his space so there was never an issue there.
The first issue arose when Eloy was in the first grade. His teacher sat me down and told me that Eloy’s focus was different and that even his classmates found him to be “different.” He also became the target of jokes made by older children at the school, much to the horror of his older sister.
We had him tested for hyperactivity and attention deficit disorder when he entered the second grade. Never, ever did we expect the diagnosis to be autism. To me at the time, an autistic child was one who would not talk and would only flap his or her hands. Not my beautiful, happy son.
Around that time, I was finally able to put my finger on what it was about him that I perceived to be different. He stopped looking people in the eye, and while he liked other children, he shunned groups. While others in his age group moved on to more mature activities, Eloy still held on to his favorite games and because of this, he was left behind.
He never complained about anything, except for stomach problems he started having. Although his teachers and the school tried to work with him, it became clear as he got older that they had no idea how to deal with him. His IQ was extremely high, but he was not scoring well with the new class system of group work and he was getting frustrated. It was clear that he was being pushed away.
|It was his sister who then suggested that Eloy learn Kendo, the Japanese Samarui martial art of sword-fighting. He always liked playing with sticks anyway so we tried it. That was 10 years ago. Once he started to participate in Kendo, his life changed. Although school continued to be a problem and we had to homeschool him, Kendo gave him a new sense of security and confidence. Dressed in his bogu, almost closed off to outside distractions, Eloy has been able to shine. His high level of pain tolerance helped him to excel at the sport, and in 2001, Eloy became Aruba’s Kendo Champion! At age 11, he started traveling with his team, competing in the Netherlands, Cuba, Venezuela, Colombia, Ecuador, and Mexico. In May, he will participate in the World Kendo Championships in Italy.
Eloy, who turned 20 in February, now looks people in the eye, thanks to therapy. He needs to be reminded that he can blink his eyes and can avert his gaze from time to time. He still has not finished high school, despite him breezing through the science subjects, and he still gets stuck when he has to analyze social situations. But little by little, he is finishing the Penn Foster Program, now completely on his own. He added Mixed Martial Arts to his sport roster and is now working in a place where he can meet other people. Eloy still shuns large groups and hates heavy noises. He does not go out often, except for to the movies or to restaurants, yet loves meeting new people, particularly when they are English speaking.
Eloy is showing others that autism does not mean that you can’t live a full life. It will require us, his parents, to expend extra effort to motivate him to drive a car so that we don’t have to continue driving him around, but we are sure he will do it eventually. And with all of his travel experience, his passion for sports, and his love of comedy, our hope is that Eloy will be able to communicate a little bit more of himself to the world. In our case, autism may have hit us hard in the beginning, but the journey has been nothing but adventurous. Emotional at times, but joyous nonetheless.
Along with a few other mothers, we founded the Aruba Autism Foundation to create awareness of this neurological disorder that was once completely alien to all of us. The Foundation, active since 2005, has helped to increase knowledge and understanding of autism, working with local and international organizations, like the Dutch Association for Autism and Autism Speaks. Being the Chair of the Foundation takes away a lot of my personal time and work time. But when I hear a parent’s all too familiar story and witness a teacher’s helplessness, it provides enough motivation to continue on in this role so that other autistic persons and families can experience the joy of their achievements, whether big or small.
Dilma T. Arends
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.