As parents of a child on the autism spectrum, we have spent many years on an emotional rollercoaster. On the one hand, we have been excited to celebrate Emily’s developmental milestones. Yet those feelings of excitement have always been tempered by the anxiety and concern about her puzzling behaviors and what the future holds for her.
Early on, we were told by some of Emily’s pre-school teachers that “there is nothing wrong with your daughter” and we wondered if it was all in our heads. But in time, Emily’s problems became more apparent. It was not until Emily was 12 years old that she was properly diagnosed with ASD and Tourettes Disorder. At this point, it was clear that Emily’s needs could not be met in public school and she was transferred to Village Glen, one of the Help Group Schools for children with ASD and other special needs. This began a series of intensive interventions and supports that addressed Emily’s challenges more appropriately and effectively.
With the help of a team of dedicated and knowledgeable professionals, her family’s support and Emily’s determination and work ethic, she has been able to make progress and overcome challenges far beyond anyone’s expectations. However, the support, scaffolding and advocacy required to help Emily reach her potential has been significant.
Like most parents of children on the autism spectrum, we are always desperate for more information and support. But every individual on the spectrum is different and there is no roadmap to success.
That said, it has been our philosophy to focus on Emily’s interests and strengths and provide her with opportunities to thrive in those areas. I learned to change my expectations of Emily and rejoice in her successes. No doubt, the journey of parenting a child with ASD has made me a better person because of it.
Without Emily being just the way she is, the special needs community would be more than a little worse off. I know this to be true and it inspires me to continue to do all I can to support Emily’s goals.
When she was a child, Emily had difficulty making conversation, so we supported her interest and ability in playing chess. With her hard work and dedication, she became a ranked chess player. When Emily was 5 years old, we NEVER expected to be spending our weekends sitting in hotel hallways while she and her younger brother competed in nationwide chess tournaments. With every success, Emily became more self-assured and seemed to function better in the mainstream world. In addition, Emily comes from a tennis playing family, so she was exposed to the sport early. Having parents who were both collegiate athletes probably contributed to her inheriting her athletic talent. She took to the tennis courts early on and we enjoyed decades of fun on the tennis courts as a family. In the tennis world, Emily’s work ethic and determination served her well once again. She became a ranked tennis player, collegiate varsity all star player, tennis instructor and all-around tennis enthusiast.
Having Autism Spectrum Disorder (ASD) has taken Emily and her family on a unique journey filled with many ups and downs. Things have been very challenging at times. We are filled with questions about the future for Emily and how to help her access support and services so she can continue to live a life of purpose and be as independent as possible.
Emily’s struggles with ASD gave her the ability to connect with other children having special needs. Since she was a young girl, she has had a unique ability to connect with children having disabilities. Her greatest joy was working with special needs children. This developed into a passion for helping them learn and thrive. Her love for working with children with disabilities and her passion for making a difference in their lives fueled her desire to become a special education teacher. Whenever she feels self-doubt or frustration with the challenges of having ASD, she finds strength and happiness knowing that she is working in a field that she’s passionate about and that she’s making a difference in the special needs community.
Over the years, we have encouraged Emily to become self-aware and learn to self-advocate to the best of her abilities.Emily understands many of her difficulties and benefits from services and supports to help her with the challenges relating to her ASD. But she constantly proves herself as a determined, responsible and caring individual with a gift for working with children with special needs. She truly is an Autism Whisperer.
I am fortunate to be able to use my health care background and advocacy skills to access and improve service delivery for individuals like Emily and their families who live with Autism Spectrum Disorder. Indeed, I have become expert at exploring and identifying strategies, interventions, and services to help kids with ASD through the difficult preteen, teenage and young adult years, while gently nudging them towards a more independent future. But making friends, romantic relationships, community participation, jobs, health and co-morbid conditions and issues of daily living require constant support and encouragement nonetheless.
As a parent, knowing Emily has found passion in her work as a special needs teacher, tennis player and instructor is very comforting. Every success in her life (and in the lives of individuals with ASD) is critically important. That being said, we see Emily’s role as a Program Director with Aceing Autism as the perfect combination of her interests, abilities and natural gifts, which helps her continue to lead a happy and fulfilling life.