It has been both a privilege and a challenge to be in an environment where my learning never stops. Not only am I conducting my internship and research at a school for children with Autism, but I am also living with a young girl on the autistic spectrum named Ally, and am thus being exposed to what it means to teach a child with Autism and to parent one. I will disclaim here that there is a debate within the Autism activist community about whether to refer to those on the spectrum as “autistic” or “people with Autism.” I do not lie on either side of the debate, and do not wish to offend anyone nor make any particular statement with my word choice. Just like all other children, children with autism are vastly unique. Their unification under the Autism classification does not in any way imply a uniform experience or uniform needs, so the following observations of how my host parents have chosen to parent their daughter must not be generalized.
Ally is a phenomenal child who has far exceeded early specialists’ expectations. She was relegated to the nonverbal category and was predicted to essentially remain a vegetable her entire life. In her memoir Seeing Ezra, author and mother of a special child Kerry Cohen expresses her frustrations with such sweeping diagnoses about her autistic son at such a young age. How can one stressful evaluation be enough to determine her child’s future? Why aren’t her motherly instincts respected in the context of her child’s difficulties?
The life of a child with autism is rarely predictable, and the extent to which these children understand and absorb the world around them can seldom be measured. Skills arise out of nowhere, and other difficulties may manifest with time. To relegate such a young child to a life without meaning almost seems a sin in and of itself, especially after living with and witnessing the full force of young Ally.
She laughs heartily, jokes tastefully, and knows what she wants and exactly how to get it. She knows right from wrong, friend from foe, believer from non-believer. She has sports lessons in the mornings and cycling in the evenings, clears everyone’s plates from the table and, when her father allows, pours everyone’s drinks. Seeing Ally without a book in hand—or four—is like peanut butter without jelly. She blows kisses when she gets her way and bumps you with her bum when she doesn’t. The beauty and complexity of her personality, her being, warrants much more space than a single blog post, but at the moment, that’s all I have.
Though her parents insist that the credit is all hers, her progress is surely a reflection of their tireless dedication. Their philosophy goes as such: It’s not about us, it’s about her. Ally means everything to us, and we love who she is. It’s always been about her and what she needs. She is our boss. She is our teacher. We take her everywhere we go because she needs to see, hear, and feel as much as possible.
“I’m so active on Facebook because of my Mums…” Ally’s mother says. She is Trustee at the Bubbles School for Autism and runs training sessions for mothers of Bubbles students about how to continue the therapy they receive at Bubbles in the home. “They need to know that it’s ok to take their children out, to live their lives. Why should we live our lives halfway because our child has Autism?”
Why should they?