This blog post is by Hayley Harris, proud mom of four sons. One son, Donovyn, has autism. Donovyn is the 2013 Hero for the Walk program and will be featured on all Walk printed materials. Here is their story.
My son Donovyn will turn 14 this year! Like other 14 year olds Donovyn’s voice is changing, he is now taller than me, he asks for money often, and listens to “teen-age” music. However Donovyn is unlike any other 14 year old. For his birthday he has asked for a timer for his lights, ink cartridges, paper, office supplies, and t-shirts with logos of different types of sodas. Donovyn also has asked for a surprise party, but sadly has stated, “I don’t have any friends to invite to my birthday party.” Donovyn has autism and autism pretty much permeates all aspects of Donovyn life.
My sweet and very loving (my son has always been very affectionate with our family) son came into the world two weeks late and after a somewhat complicated birth. Aside from colick the first few months, Donovyn seemed to be like any other newborn. Donovyn met his developmental milestones on time the first year. At age one his first words were kitten and knee. After Donovyn’s first birthday Donovyn did not seem to progress. His language did not grow and by 18 months Donovyn had become very anxious. Prior to his 3rd birthday my husband and I knew something was wrong and our journey into the world of autism began! We met with neurologists and psychiatrists and originally Donovyn was given the diagnosis of anxiety, ADHD, and PDD Nos. In time Donovyn was eventually given the full diagnosis of Austism. With Donovyn’s autism and slow development WE entered the world of doctors, waiting rooms, and therapies. Donvoyn had allergy testing, EKGs, EEGs, MRIs, Occupational Therapy, Sensory Integration Therapy, Speech Therapy, Social Skills Groups, Therapeutic Horse Back Riding, attended a special speech and language program at the local University, began taking medications, and was placed on a gluten/casein free diet. I say we instead of only Donovyn because Donovyn’s younger brothers also had to spend many hours at these appointments. Donvoyn also participated in a week long program in Charlottesville, Virginia where he was placed on a moving table, listened to music, and watched bright lights in a dark room. Additionally Donovyn participated in a yearlong study at the National Institute of Health on OCD and Autism. These interventions did not come cheap and insurance only covered a small fraction of the costs. But when your child has autism and you want the best for him you will go to great lengths to help him! Along with the many interventions came many sleepless nights of watching old video tapes of Donovyn’s first few years (being the first born we of course had plenty of video of Donovyn) in search of finding some clue to why or how Donovyn “developed”autism. Also the sleepless nights included surfing the internet for any new information that might help my son along with opportunities to read other peoples stories who understood my situation.
Fast forward to now and Donovyn is no longer receiving most of these services due to his school schedule and high cost of therapies. In some ways we miss these times because Donovyn along the way has had some amazing people in his life and a weekly “activity” to attend. Although Donovyn has three very supportive younger brothers who are there for him, he reports he is lonely and wants friends. Due to Donovyn’s autism his communication/social skills are weak. Donovyn can speak in sentences but he often asks repetitive questions throughout the day and talks about things that are very unique to him. Donovyn continues to struggle with the most basic tasks involved in reading, writing, and math. He talks about going to college yet he functions on a 1st grade level. Donovyn understands he has autism, has asked why he has autism, and on difficult days has said, “I wish I didn’t have autism.” On good days Donovyn’s smile brightens your day and his laughter (although it is often related to something he only finds funny) is contagious. Donovyn’s heart is big and he loves to donate to charity. Donovyn participated in the Austim Speak Walk last year and is excited to do so again this year. Our walk in Charlotte is at the Motor Speedway which is home to Donovyn’s favorite mascot, LugNut. Donovyn has always loved any type of Mascot and talks about having a job as a mascot when he grows up. Autism Speak also became important to Donovyn this past summer as he attend a soccer camp sponsored by The Charlotte Eagles and Autism Speaks. Aside from Special Olympics there have not been many opportunities for Donovyn to participate in activities since becoming a teenager. Now that Donovyn is getting closer to becoming a young adult I imagine Autism Speaks and other organizations and groups who help adults with autism will again become an important resource and help to Donovyn and our family as we enter a new path on our journey with autism.
As a mom of a son with autism and three sons without autism I know I will continue to experience good and bad days. I know tears will emerge again when my other sons reach significant milestones (such as learning to drive a car, going on a first date, graduating from high school and beginning college, getting married, and buying their first home) and Donovyn does not. But I also know, with Donovyn, I will never be lonely as he will always be by my side accompanying me on errands (one of his favorite things to do) and filling our home with noise as he talks to me non-stop about his latest obsession and breaks into spontaneous laughter about something he finds utterly amusing!