Sometimes this little man is so intensely focused on an object or activity, the rest of the room, the rest of the world, falls deep into the background. He takes his time, studying pieces of this world sideways, upside down, and from every other possible angle.
For someone who “lacks appropriate eye contact” (so they say) when he does look at you, he REALLY looks at you. He examines every wrinkle and freckle, he touches, smells, and tastes.
He might not notice a person enter a room because he is intensely focused on a tiny bird, gently perched right outside the window. He doesn’t just see a bird. He sees feathers, shapes, unique movements, wings, eyes and so many colors.
Or he might be distracted by the steady, piercing sound exuding from the bothersome, bright overhead lighting.
So, when the COVID-19 pandemic and subsequent quarantine hit, you can imagine spending hours a day trying to draw this little man’s attention to a computer screen for Zoom therapy sessions was rough.
Why did we try? Because this isn’t about falling behind in the world of ABC’s and 123’s. It is about attending and listening so that he can learn in an environment beyond 1:1. It is about co-regulation and self-regulation so that he doesn’t hurt himself. It is about word comprehension so he can use them to get his increasing needs and preferences across.
The silver lining in this dark cloud of quarantine has been the chance to slow down. To be still and learn from this curious, brave, unique boy. Watching him radiate happiness from the simple things in life that most of us are moving too quickly to appreciate.
Like the way he savors every bite of summer watermelon and dances with his shadow when the sunshine brings it out to play with him, this little human is so complex yet celebrates such simple happiness every day.
For many of us parents of children with disabilities, the quarantine has changed everything, yet much remains the same. The isolating road we are on has narrowed with less in-person support and interaction, yet we continue to face the same kinds of difficult medical and educational decisions that we always have.
We continue to champion for our children to have the supports and services they need to thrive, while we consciously fight to keep our hope stronger than our fears.
With so many unknowns in the future, we must believe that it’s going to get better, and that we will grow stronger.
We will continue to learn, to advocate, to protect and make certain our children know their worth and just how very much they are loved. We will continue to be their voices until they have found their own.