Life with my daughter on the Autism Spectrum.
Sarina has a difficult time right now. She is grieving her limitations. She's all too aware of what she calls: "my hiccups" and that's painful. Like for all of us, when we hit a wall, or when life throws massive obstacles on our path we either grow, get stuck or shrink. Either way, it hurts at first. Right?
And we need help. Or learn how to ask for help. A difficult concept for someone on the autism spectrum.
Sarina is gentle hearted and carries a natural smile. She loves life. But she doesn't share her feelings easily. She turns a bit pale, is teary-eyed and more withdrawn when she carries pain in her heart. It takes a gentle way of inquiry for her to open up. Until finally, her pain pours out of her: "I feel invisible. Like we're all squashed into a bubble floating around campus. Like nobody sees us or knows about us," is how she explains her struggle. Making sure I don't misunderstand, she adds: "I love college and my teachers, but most of the other students on campus don't know enough about us."
College is her sanctuary, her dream come true.
What she observes is the challenge of her life. And mine.
With us she means the group of 20 students who follow a unique curriculum in smaller classrooms. The typical classes she yearns to attend are often too fast-paced for her. And so is social life on campus. The life she craves to belong.
It pains her to walk her path mostly alone. Autism spectrum is a diagnosis that can mean a lot of things. Of course, not one person on the spectrum is like the other. It describes people with social, communication, and sensory issues.
Labels don't fit.
What I know to be true is clear. Sarina's struggles don’t have to do with being capable but with having the right support and environment and a willingness to think outside the box:
Sarina and most of her peers don't have the skills to burst the bubble. Her social skills are awkward. It depends on us the neurotypical people to step inside the bubble, spend some time inside to understand better how we can help. How we can soften the loneliness. How we can open their world.
That's the path I am on. That's what I want to create for her. A circle of support, or that village every child needs. Only for her the consciousness of the village needs to evolve. Mindfulness is required, the willingness to stop and look outside the box is essential.
It's humbling. My daughter's challenges are putting the mirror right in front of my face to practice what I teach. Which starts with honesty and leads to:
Self-care and self-reflection
My daughter's chain can easily become mine. I need to make sure I cut mine in order to help her loosen hers.
I learned from Maya Angelou:
“There is no greater agony than bearing an untold story inside you.”
I don’t shine if you don’t shine!