Yesterday was picture day at Emma's school. Over the weekend, I went to the photographer's website, paid for the photographs online, chose which packet we wanted and then filled out the little envelope that had been sent home and placed it in Emma's back pack. Emma and I discussed picture day and she carefully chose what she wanted to wear -- a red velvet dress worn with black velvet leggings. She washed and rinsed her hair the night before with particular care, and as she waited for the bus, she smiled at me and said, "Smile!" I laughed and told her I couldn't wait to see her photograph. The bus arrived and off she went, sprinting up the steps, with me waving goodbye.
That afternoon I had a meeting at her school with a few people from her team. I was informed that there'd been some issues in the morning and Emma had become distressed. There was mention of her wanting to leave the room because of it being picture day, but that she had to stay in the room and was not allowed to leave. I assumed that was because the other children were waiting their turns too and didn't think to ask for more information. The conversation veered off to other, seemingly more important, topics.
When I returned home with Emma I opened her back pack to find the envelope for picture day just where I'd left it. No one had taken it. Still, I didn't put two and two together, didn't think to ask Emma about it and besides, she'd already been asked to write with me that afternoon at school. Since Emma communicates most accurately by pointing to letters on a letter board, which is exhausting work for her, I didn't push her to write more. Instead, I emailed her teacher telling her the envelope was still in her back pack and received a reply that they hadn't seen it and therefore assumed that I did not want Emma to have her photograph taken, but that she had been included in the class photo. And I felt that awful feeling when your throat feels swollen and you can feel your heart beating and your chest constricts and your breathing becomes shallow and your vision blurs.
This morning I spoke with Emma about picture day, telling her there'd been a misunderstanding and how sorry I was. I asked her to talk about it. She told me how upset she was that she didn't get to have her individual photograph taken as the other children had. "I'm so sorry," I kept saying, but I can't make what happened any different. I know it's just one incident, something relatively small and in the grand scheme of things not particularly important, but you see, this is just one example of what occurs regularly for our kids who do not speak, or, as is the case with my daughter, occasionally speak but cannot say what she necessarily intends. Emma described her experience of speaking recently, by writing, "my mind talks heavy thoughts, but my mouth talks silliness."
There are dozens and dozens of "picture day" moments. Little things where she is misunderstood, cannot initiate a complaint, is not asked the right questions, cannot "speak up," cannot protest with a reason why -- instead, she is thought to have "behaviors" when she tries to leave the room. Assumptions are made, well-meaning staff decide they understand her and know what is going on, and maybe they do, but maybe they don't. How many "picture day moments" happen from one day to the next? Expectations and questions gone unanswered, thoughts and feelings unable to be formulated into words, or words at the ready if others were only capable and able to support enough that those things could be expressed. How often?
Teachers are trained in a definition of autism that is incorrect. A definition that includes and assumes intellectual disability, which is connected to an inability to make oneself understood, low IQ, problematic behaviors and social impairment. Because a child cannot use spoken language to converse, cannot make their bodies and facial expressions correspond to their feelings, they are thought to be without thought. Being unable to read aloud is assumed to mean cannot read at all. There are a whole series of assumptions being made daily about Emma and kids just like Emma, but those assumptions are based on a false premise.
Teachers must give our children state-required assessments and those scores are believed to represent capability when, in fact, they do nothing of the kind. Children like Emma must prove they are not the sum of what others believe to be true. And even now that Emma is writing, by pointing to letters on a letter board, she is still not treated as she would be, were she able to speak all those insightful words she so painstakingly writes.
There is so much that is wrong with the way we think about autism and autistic people, and it begins with our children and continues from there. Our children, who are then put into schools, most of them ill-equipped to help them flourish, spend their days in special education classrooms where they protest in little ways all the time. The Board of Education is a massive machine, and it is one that must change from the bottom up. The premise they are working from -- that what our children who have the ability to speak words are saying, is exactly what they intend, that their spoken language represents what they are capable of, that those who cannot speak, who protest by biting themselves, hit their heads against walls of brick and concrete are demonstrating "behaviors" as opposed to actively protesting a system that is not helping them, so curriculum is dumbed down, life skills are taught, a high school diploma is not a given, college is not viewed as a realistic goal, all of this is wrong, so very, very wrong.
How many "picture day moments" does a child have in any given day? How many?
For Emma's Hope Book Facebook page click here.