You know that feeling, that feeling like you are struggling and screaming for help under water.

Sometimes that feeling feels constant for me. Every day brings some level of struggle. Some days it’s just that feeling of not being seen. Some days it’s managing through heartache with something the girls are going through. Some days it’s the feeling of being defined by my role as a special needs mom. Some days it’s facing the fact that I lost a daughter. Some days it’s the feeling of loneliness at home even with William and his caregiver there. Some days it’s facing the never-ending list of things to follow-up with, do, get, clean, fix, order, and make appointments for.

But each day I accept the challenge of getting my head above water and over the years I have build my own tool-kit to help. And then there are the days like the one that ended with Teen Night – my whole self was out of the water.

William has been learning his eye gaze system for years –  9 years I think. Over the last couple years there has been a focus on communication.

I mean, communication has always been the goal but there was a long process to getting to the communication piece.

We have slowly built William’s repertoire of words, phrases, slang, emotions, weather, activities, routines, needs, preferences, body parts and reading. More recently we have worked on how he introduces himself and greets new and returning people. We practice daily and are always looking for ways to incorporate his eye gaze system into as much of his daily routine as possible.

We finally had the opportunity to have William attend teen night for children with special needs in our community. He went with his speech language pathologist and his caregiver.

Dressed to impress and eye gaze mounted, they hopped in the van for what may have been one of William’s best evenings to date.

While they attended teen night, I was running around like a chicken with my head cut off, trying to get a few things done while driving the girls where they needed to be. I was driving back home when my phone rang. It was William’s speech pathologist – she never calls me. I immediately picked up thinking something may have gone wrong. But I was quickly greeted with an elated voice on the other end of the line. She could not stop raving about William’s successful communication with kids his age.

This moment was the opposite feeling of drowning. It was almost euphoric hearing that my sweet boy was so well received by his peers and that they motivated him to show his skills and understanding of something we had been working on for so many years.

For over an hour he answered kids’ questions, used his slang to make funny comments, and greeted kids appropriately with phrases like, “what’s up dude.”

These are the moments that I cling to tightly. Yes, I feel like I’m drowning sometimes but on the flip side I get to experience some pretty magical moments.

And there is nothing more magical than your child socializing, laughing, chatting and being a kid. This week we have added some new phrases to William’s device, and he will be back to teen night next Friday.

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.