Last week, I was picking up my four-year-old daughter, Syona, from school for an appointment. I arrived earlier than expected and got a chance to be a fly on the wall during her group speech-therapy session. (Syona has cerebral palsy.) When she was done, I surprised her at the door. As I wheeled her down the hallway, I noticed the tray that we needed for her next appointment wasn’t with her, so I asked, “Syona, is your tray in your classroom? Or was it left on the bus?”
“In the classroom, Mommy,” she responded. As we stepped back into the room, I took a breath to ask her teacher where I could find the tray, but Syona spoke up before I could pipe in: “Teacher, I need my tray, please.”
Since starting school earlier in September, there's no doubt that Syona’s speech has improved significantly. But this was something different—this was a form of self-advocacy. Two years ago, this was an unfamiliar term in our world. What it means is that Syona now actively asks for what she needs and openly shares her opinion. Now don’t get me wrong, my girl has always been strong-willed and opinionated. But up until now, we made all the decisions for her. My husband, Dilip, and I would decide when Syona wore her AFOs (ankle-foot orthoses), moved around in her walker or went to the park. Sure, we would give her choices, but they were often structured around our decisions. We also served as Syona’s voice, facilitating requests—although we encourage her to speak up for herself.
But lately, there's been a noticeable shift. Syona has started requesting very specific things as opposed to just crying and throwing a tantrum when things don’t go her way. Before going to bed the other night, she requested that I stop giving her kisses because she'd had enough kisses from me that day. A child with the ability to run away likely would've just run away with their arms flailing, asking their mom to stop with the kisses already. Since Syona can’t make a run for it on her own, we listen to her verbal requests. While in her wheelchair, Syona has started to announce that she is running away, all by herself. So when we are in a safe place, we give her a bit of distance (within reason).
As parents, we know the fine line between Syona’s self-advocacy (allowed) and letting her completely run the show (not allowed), and when we’re unsure, we discuss it out on a case-by-case basis. When you have a child with special needs you learn how to advocate for your child and your family. But—like anything else related to parenting—one of the reasons you do it is to help your child learn how to do it for herself one day.
I want Syona to have the confidence to ask for what she needs. And I certainly hope that this is a step in the right direction.