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World Autism Day: This is Owen’s Story

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ExpertsPost Category - ExpertsExperts
ParentingPost Category - ParentingParenting

Owen’s Story Is Not Much Different Than a Lot Of Children Diagnosed With Autism

April is an American mama who has lived in Dubai for 10 years with her pilot husband and three kids.  Her oldest son, Owen has autism and has inspired her to become an advocate, blogger and author to spread awareness and acceptance for Autism throughout the world so that no one feels alone. April is the founder of Autism Mom Dubai, Autism Support Dubai, Peer Power and Autism Airspace.  She has a passion for helping others on their autism journey by encouraging them to get out and explore the world without being afraid of what the general public may think. 

April is currently employed at Autism Rocks Support Centre as a Family Outreach Coordinator where she gets to follow her passion of spreading autism awareness and acceptance. 

When Owen was a baby, strangers would stop me to tell me he was the most beautiful baby they had ever seen. Of course, I agreed, but at the same time I thought they were just being nice. Two babies later and looking back at his baby pictures I know he was truly beautiful.

Owen sat up, crawled, walked and babbled on schedule and he seemed to be a healthy baby boy. Looking back now, I can see we had a few ‘red flags’ to indicate he may not have been without a delay. The first being during Owen’s 2 years old check up, the nurse asked if he was putting two words together. “Well”, I said, “he says bye-bye and mama and that’s about it”. However, he did have many other single words (around 40 to 50). The Doctor acted as though it was no big deal and explained this is sometimes the case with boys and only children. He then suggested we see an ENT Doctor and recommended tubes to be placed in his ears, since he had three ear infections in his short life.

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A few months later in June my precious little baby was being put to sleep, so tubes could be placed in his ears in hopes he would hear better which would lead to increased language. Sometime during these few months, Owen got a yet another cold and our regular pediatrician didn’t have any appointments available. I called around and found a pediatrician that had availability. Owen continuously screamed as we visited the new young doctor that day. The doctor told us we should consider getting Owen evaluated. I wasn’t sure what that meant, and/or I took it with a grain of salt, I don’t remember why I didn’t follow up. I just remember, I was a very tired, stressed mom. My husband, being a pilot, was gone a lot, I had a toddler and a baby.

Some time over the summer of 2005, Owen seemed to be talking less than he did before, so I started searching the internet for ways to help him talk more. During my search, I came across a website called Baby Bumble Bee. This website offered videos claiming to increase children’s vocabulary and language, exactly what I was looking for, right? Before purchasing the videos, I read the parent reviews. As I was reading the reviews, this word Autism kept catching my eye. Many parents were claiming these videos helped their child with Autism speak. I thought to myself, Autism, what’s that? Next, I did what most people do I Googled Autism. As I read the signs of Autism, I got a sick feeling in my stomach, Owen seemed to have most of the signs. I immediately called my husband who was visiting his mother in Washington, DC. I explained to my husband and mother-in-law of my findings. My mother-in-law worked as a Developmental Psychologist and worked with autistic children for more than 20 years. Nevertheless, within what seemed to be a few days, Owen had an appointment with my mother-in-law’s friend who at the time was in Autism Research at the Center for Disease Control (CDC) in Atlanta, GA to setup an evaluation.

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The Day that Changed Our Lives

On October 16, 2005, less than six months after his two year check-up, Owen was scheduled for his first assessment. By this time, Owen’s language had regressed, and he was saying only 2 to 3 words. The doctor started asking Owen to do simple tasks through play. When Owen did not respond to her request, it became very clear to me that the prognosis would not be good. The doctor didn’t say too much on the day of the evaluation, but then again, she didn’t have too, I knew! A few weeks later after the doctor scored the test, reviewed her notes and wrote up a report, we had a meeting to go over the results.

While we waited for the test results I got busy, I started enrolling Owen in every government assisted program (Parents are first teachers, no child left behind, etc.) available to help him learn and to teach me how to teach him. On the result day, I was prepared. I had read up on every type of treatment available for Autism (DAN doctors, ABA, Oxygen therapy, etc.). When I started asking the doctor about all the treatments and how we were going to make Owen better, the doctor (remember she was my mother-in-laws best friend) told me there is no cure, however, it may become less visible with ABA. She warned us to be careful of people who claim they can cure Autism. Tears rolled down my face, and my husband’s face. And guess what, we didn’t listen to her warnings!

From that day, we started holistic treatments, ABA, speech and occupational therapy within a couple of weeks. Owen’s behavior was improving and he was learning letters, numbers, colors, animal sounds, etc. However, he had lost all spoken words. We did what we had to do and before we knew it he was in an inclusion public pre-k and baby number three (surprise) was here. Owen was learning so much from his classmates, but they were learning more from him. He also started using an Augmentative and Alternative Communication (AAC) device, aka talking machine. Everything seemed to be going good for our family. Having three kids in diapers was not easy to say the least and to be honest looking back I’m not sure how I did it. But as mothers, we all do what we have to do.

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Like all pilots, my husband wanted to better his career and fly the jumbo jets. We did some research and it seemed Dubai had many places for Owen, so we went for it and he applied for a job at Emirates. We moved to Dubai in 2008, which was both exciting and scary. Before we moved, The Dubai Autism Center (DAC) had assured us that their new building would be completed by August 2009 and Owen would have a place. A few months after we moved, the financial crisis occurred, and DAC stopped receiving donations and the building stopped being built.

Without the new building the waitlist was extremely long, and Owen no longer had a place. At the time, traditional mainstream schools in Dubai would not dare think of taking a non-verbal autistic child. We checked into other centers providing ABA therapy, but the cost was between 8000 to 10000 AED per month, and this was not feasible for our family. We searched for a speech therapist that had knowledge of Owen’s AAC device and none were to be found. So, we decided to have Owen stay at home and work with him until we could find a place for him. We were very lucky and found and hired a nanny within weeks. I worked with Owen but eventually the guilt of Owen not being in school took over. Reluctantly, we decided to enroll him in another special needs center. He is now attending attending his third special needs center.  Unfortunately, the first two did not offer an academic curriculum.  Now he is attend a center which offers the K-12 program at which we hope will lead him to attend a mainstream school next year. We’ll keep you posted. 

A huge thank you to April for sharing Owen’s story. 

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