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MyLife InFocus



When my husband and I first learned that our son would be born with Down syndrome, we were less worried than many prospective parents might be. We had a few advantages: I had worked and volunteered with children with varying abilities since middle school, my mother was the Exceptional Children’s Director of a large public school system, and, most importantly, we knew that we had family and friends who would support us and love our child unconditionally. The two things we did – and still do – worry about were his health and his education.

Down syndrome can come with some pretty severe health conditions and our son Javier has a few, including a heart defect, kidney reflux, and several breathing and airway issues. It also comes with mild to moderate delays in gross and fine motor development, speech, and cognitive ability. This can turn a child with Down syndrome’s access to education into a tricky playing field. While children like Javier tend to thrive in inclusive environments, surrounded by typically developing peers, they do often need additional support and extra help in areas such as reading and math. While their right to an education in the least restrictive appropriate environment is protected by the Individuals with Disabilities Education Act, underfunded and overtaxed schools systems, lack of access to resources, and an unfortunately prevalent underestimation of their abilities can force many children with disabilities out of inclusive classrooms and into separate learning environments where they are not challenged to rise to the highest level of their abilities. 

My husband and I are lucky that our son was born at a time when people with Down syndrome are doing amazing and astonishing things. It seems almost daily that there is news of someone with Javier’s condition becoming the first to summit Grand Teton, conquering the fashion world as a runway model, running their own business, attending college, or even competing in bodybuilding competitions. There is a hit show on A&E all about people with Down syndrome and their lives, and it seems in many ways that awareness and inclusion are becoming the rule, rather than the exception.


When our son turns three in a few months and enters the public school system, our hope is that he does so on equal ground with his peers. When he turns five, we want to see him in an inclusive kindergarten class with as few accommodations and modifications as possible. We know it will take some extra work on our end, but we’re hopeful that the efforts we have already put in through his early intervention programs and therapies, combined with the progress he will make with his team through our public school system will result in an educational future for our son that is just as bright as any other child’s. We know that Javier is up to the challenge, and we can’t wait to see the impact that he will make on the world.


Advocate and Mother

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