A funny thing happened to me between when I learned that my unborn son had Down syndrome and when I saw him, laced in cords but breathing, in the neonatal intensive care unit. I went from worrying about his weaknesses to focusing on his abilities.
If only I could bottle that mental and physical evolution and inject it into every person whose decision-making affects Charlie's life.
Since that's impossible (and it's probably not a good idea to give a provoked mama bear a sharp object), I shall instead share a simple code of presumptions I wish everyone would study until they understood and believed them.
- Trust that my son can make it up that hill, metaphorically and quite literally. Because if no one believes in him, how can he believe in himself? And if everyone helps him every time, how will he make the climb himself when no one is around?
- Don't cushion his fall — not every time, anyway. Charlie is a child. He needs to learn from his mistakes. Keep him safe from mortal danger, but a skinned knee is actually a helpful visual reminder about walking instead of running when we talk about it later. (No, I am not hoping my son gets hurt!)
- Wait for him to tell you. "Tell me what?" you ask. Whatever it is he wants you to know. Trust me, this kid may have only a handful of two-word utterances, but he will persist with all means necessary (sign language, exuberant pointing and screeching, leading you by the hand) to get his point across.
- Don't let him play you. He knows how to do so much more than you think. If you saw it once, demand it every time. Don't we all try to get by with just enough? Don't we all, at one time or another, wait to see if someone notices we've given less than our all? If you allow him to get lazy, I will send him to live with you. (Related: children with Down syndrome are NOT angels. See picture.)
- Presume competence — even if he is wavering, lolling around, looking scared or resisting. Hold that bar as high as you can, and when it gets heavy, remind those around you to help you keep it high. My child can do it. It may take a bit longer. You may get a bit more frustrated. He may get a whole lot more frustrated. People may stare. People may glance away in pity. Do not pay them an ounce of attention. Presume competence, and my child will deliver.
Want to help advocate for the presumption of competence? Visit Teespring, where fellow Down syndrome mama, Stacey Calcano, created a "Presume Competence" clothing campaign. (Yes, kid sizes are available.)
More about parenting a child with Down syndrome
Divorce: Does a "Down syndrome advantage" exist?
The link between Alzheimer's disease and Down syndrome
When families fail parents of children with special needs