Gavin and I recently started speaking with a parenting coach. We feel we need guidance with some of Caila’s unusual behavior over the last few weeks. She is amazing, and then does bizarre things. Our instinct was that these have been attention-seeking acts, but we were at a loss about why they started and how to stop them. A few days ago, as I was getting ready to leave my house, I noticed my wonderful, independent high-schooler had started to draw hearts on the wall, right by the entrance so we could not miss it. (Hearts: what a great message to us!) Thoroughly confused, Gavin and I decided we needed guidance.
The insightful therapist we spoke with noticed ways that we treat Caila differently. Yes - us - the parents who are the champions of inclusion, imploring the world not to treat our kid differently because of her Down syndrome - we were being called out for doing just the opposite. She suggested that perhaps Caila’s behavior was a direct response to ours.
The therapist suggested that we have been communicating and interacting differently with Caila than with her Neurotypical siblings: specifically, she pointed out that we were offering praise and affirmations in situations that were unnecessary and overdoing it, something that we would not have done with our other children. Obviously each child has their individual needs, diversities, and challenges - but there is a difference between meeting each child’s individual needs and overcompensating for the fact that they are different, patronizing them, or giving them praise that is not necessarily needed or useful, only to make myself feel better.
The messaging from the recent Black History Month, Women’s History Month, and Disability, Inclusion and Awareness Month is, “Enough with the labels,” “Count us in,” “Shatter the glass ceiling,” and “Our lives, passions, wishes, and needs matter.” We have become a society of banner and post creators, aiming for likes, comments, and shares. Banners don’t change much. I think back to the Black Lives Matter protests in 2020: we saw thousands of people marching in the streets and supporting the cause. There were many thousands of great social media posts, articles, and commentaries. What was missing were the real things that actually break down barriers. How many people invited a black family to their home for a meal, and got to know them? How many people engaged in deep and meaningful conversation with a black person in their world? Growing up in Apartheid South Africa made me acutely aware of a person’s skin color. My kids growing up in Israel are colorblind. Simply being a person of color in their schools and youth groups is no longer worthy of token acts and “Be nice to them" talks. Skin color is something of no consequence, just as eye or hair color.
Each year I see Disability, Awareness and Inclusion month come and go with lots of talks, slogans and posts. I get praised for my advocacy, events and initiative. Yet on a daily basis, Caila does not see much change. She is offered token acts of kindness. I suppose that her typical peers don’t really want to be the object of chesed (kindness). Caila doesn’t either. She would like nothing more than to just be one of the girls.
My challenge to myself is to stop seeing Caila as someone with a label. I need to remind myself of my own saying: give support where support is needed, protection where protection is needed, access, validity, and so on. It seems we’ve been giving it where it is not needed, and that is an issue. I need to internalize this message: “Do unto Caila as you would to another.”
Please join me in this challenge for the sake of all Cailas, and for all groups of “others,” in order to make a real difference and collectively change the world, each in our own way.