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Autism Awareness Day

· autism,advocate,special needs

I talk a lot about labels on my blog, often with a negative connotation… but labels are not always bad. They are a good starting point to the journey in knowing your learner. As a parent and educator, I have learned that labels allow me to access the supports and resources that I need to learn about the child and how he or she learns best.

When Bella turned 3 years old, she was labelled with severe autism spectrum disorder - one of the many labels that medical practitioners and specialists have given her over the years. This label has allowed me to network with many organizations, therapists, educators, and families who have been instrumental in helping us on our journey. But most importantly of all, the autism label has helped me to understand how Bella sees the world:

  • Bella is almost 9 years old, but cognitively she is at the level of a 12-month old. Through IBI therapy and school, she is currently learning crucial life skills, such as how to feed and dress herself, requesting to go to her washroom, and communicating with us through her iPad.

  • Bella likes to play by spinning, banging, and flipping hair brushes and shakers. She is fascinated by reflections and shadows with light, which give her a sense of calm. Walking on her tiptoes and licking a cold mirror fulfills her sensory diet.

  • Bella thrives on deep pressure. Her service dog and best friend, Kadence, lets Bella put her whole hand in her mouth as Kadence’s teeth provide Bella with a sensation that she loves. My husband, Peter, often lies on top of Bella to give her the type of sensory hug that she most enjoys.

  • Bella is non-verbal. After many years of trial and error, we have learned that the best mode of communication for her is by using her finger to point and share her voice through her iPad.

Though we have celebrated many successes, the autism label has also brought me frustration, anxiety, anger and many tears behind closed doors. Our family faces a reality where every day life will always be a challenge - from fighting for funding for therapy, to ensuring that Bella can receive the quality of education that she deserves, to constantly walking away from stares and whispers in public, to responding to people who call my daughter the “autistic one” or the “child who can’t”.

April 2nd 2018 is world autism awareness day. It is a day to learn about the autism label, and a day to move beyond what you may see and assume of people who live with a disability.

  • Today I find myself asking, do labels able or disable us?

  • What are your labels?

  • How do these labels connect to your visible and invisible differences?

  • What kind of emotions do these labels bring out in you?

  • Please share your stories, as I believe that an open dialogue is the first step to learning what is behind a label.

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