While most of our time home during the pandemic has been flooded with good intentions and expertise, there is little evidence-based guidance to draw from during what we all know is this “unprecedented time.”
Maybe you discover that it really doesn’t matter if your preschooler can tell the difference between a square and a rectangle, considering she conquered the potty and straw drinking on your watch since being home during the COVID-19 outbreak.
This year is a little different: we will celebrate World Down Syndrome Day in isolation, but never alone.
We throw around words all the time, using hyperbole to force others to understand in the flicker of a moment the feelings we have spent days, months, even years cultivating. We don’t always mean what we say, and parsing language can often be an exercise in futility.
My children have taught me to be brave and to look past the superficialities of the world, straight down to what really matters. In my experience, this is what it takes to penetrate that final layer of anxiety in order to give my children the very best I can give.
This is an entirely new world that we’ve so completely absorbed it feels like we’ve had Down syndrome all along and therefore find it fairly unremarkable. We haven’t lost our identities to a diagnosis, or we have and I haven’t noticed.
Families with special needs come in all different packages. Some require more support than do others. You can’t lump us all together, even when we have the same diagnosis. Our children are as individual as are our family dynamics. But we do have some similarities.
What about the times when Hope refuses to sign or gesture or flat out do anything except melt into the floor in a sobbing heap of inconsolable toddler frustration?
We may have no clue where we are headed or what the road will feel like beneath our uncalloused feet, but we go because the only thing worse than hurting trying is the fear of looking back at time wasted.
Why a DS diagnosis doesn’t automatically open doors to therapy is at least a thinly veiled prioritization of state funding that doesn’t value this vulnerable population.