Today is the last day of Down syndrome awareness month. It’s also Halloween, which seems like an odd day for advocacy, but holidays are a day when differences make themselves felt, so my heart is feeling tender, today. We’re six & a half years into this & our family has learned so much. Changed & grown so much. Our hearts are bigger & softer & reoriented. As I attended Lydia’s class party today & met & interacted with a dozen disabled classmates, I was just so grateful that I get to be surrounded by these people & their families & their aides—there is no better world than an inclusive world where people SEE each other, value each individual, & go out of their way to show love & respect.
But that’s not the norm. Not every space is made to accommodate these kiddos. We live life, more often than not, in the corners. Trying not to interrupt. Trying to fit in the best we can. I wish with all my heart that instead of me always trying to bring my daughter to the world, the world would exert more effort in trying to bring itself to my daughter. I wish people would take the initiative to LEARN from *reliable sources* what autism is, what Down Syndrome is, & what disability is. I wish they would look up the Instagram accounts, check out the library books, & approach the disabled people in their neighborhoods. It’s always amazing to me to listen to who people talk to in our family & how—do they talk to me, or to Lydia? Do they use baby talk & demand her attention over & over? Or do they speak to her respectfully & trust that she hears them & will answer (or not) in her own time? Are they in this interaction for THEM or for HER? Is she just ignored? (More often than not, yes.)
I’m grateful for those who don’t push. Who invite us to things, but understand if we bring headphones or have to leave early. I’m grateful for those who explain to kids that Lydia may not speak/interact the same, but is interested in many of the same things, she’s kind, & loves it when we say hi & are friends with her. I’m grateful for those who offer to help a mom who is barely hanging on. I’m grateful for those who know my daughter is a blessing, not a burden. Who have eyes to see. Who INCLUDE.
