Today, the 21st March is World Down Syndrome Awareness Day. The date (21/3) represents the 3 copies of chromosome 21, which is unique to people with Down syndrome.
I am very pleased to present this guest post by Madonna Dries Christensen regarding the Many Faces Of Down Syndrome.
Despite the available support, my daughter says, “Having children with special needs can be isolating. People make assumptions about what it’s like—either that it’s horrible or that it’s simply giving a little extra help with homework. It’s neither. With that extra chromosome comes a host of little extras. Imagine any typical parent’s hectic schedule, and then add annual visits to the cardiologist, ophthalmologist, geneticist, and ENT; weekly speech, physical and/or occupational therapy; annual IEP meetings at school; frequent insurance and educational paperwork; extra time looking for clothes that fit (or altering them); and plenty of extra time reminding or assisting with ordinary activities like getting dressed or brushing teeth.
“And there are positive extras: extra bonds with parents in the same situation, extra happiness when your child reaches a long-strived for milestone, extra excitement when your child is invited to a classmate’s party simply because “she’s my friend,” and extra pride when your typical children advocate for their sibling.”
For this grandmother, there is extra love from a little girl who greets me with her big smile and an enthusiastic “Hi, Granny.”
Note from Ken Devine: Madonna is the author of the recently published 'Toys Remembered' the proceeds of all sales being donated to the Down Syndrome Association of Northern Virginia.