Long ago a developmental pediatrician informed us that Sam’s “scores are consistent with mental retardation, but unfortunately I don’t think that’s what’s going on. She has autism.” Unfortunately? Unfortunately she’s not cognitively impaired? Unfortunately she’ll never be able to be the unpleasant child I knew, from playground reputation in our small community, his own daughter to be? Unfortunately her life will be worthless?
This sojourn down memory lane was sparked by a number of near-simultaneous events. I attended a meeting about autism and employment where the parents who created a program called Islands of Brilliance recalled their son’s diagnosis. The neurologist told them, “Lower your expectations . . . . [he will] never go to college.” This fall their son will begin college.
Earlier in June, one of Sam’s resource teachers and I convened a panel of alumni from her school to tell their stories of life after high school for students labeled with disabilities. Their special needs vary considerably—hard of hearing, ASD, learning disability, ADHD, bipolar disorder, anxiety—as do their trajectories. More than forty alumni wanted to share their stories and the wisdom they have gleaned from experience. I wondered (and intend to find out) what prognosis each of their parents received so many years ago.
Finally, I am working with a family in which the child repeated sixth grade this year. The school is located in a low-income, crime-ridden community. The child’s diagnoses are major depression, PTSD and ADHD. When we first met a few months ago, the child was failing sixth grade for the second year and the school was seemingly unconcerned. At one of the meetings we held to add supports to his IEP, his social studies teacher attended as the gen-ed representative. He reported that the child would be failing for that quarter, because a major project was incomplete. I asked if there was any way the child had time to remedy the situation and pass, and the teacher said he still needed a cover page. A cover page! A piece of copy paper with the words “Ancient Greek Olympics” and the child’s name. With that piece of paper, the child would pass. Why did I have to pry this information from the teacher? How hard would it have been for the teacher either to tell the parent what was still required or, better yet, pull the student in during study hall to write the title? He told me that he could not force a sixth grader to meet with him during study hall. He expected failure and was preparing to prove himself right.*
Sam and I just viewed an exhibit of the collaboration between photographer Gordon Parks and his friend Ralph Ellison, author of Invisible Man. Using text from the novel as a starting point, the images of Harlem in the late1940s portray a community accustomed to invisibility, expected to fail. Some of the most striking images show a man emerging from underground, seemingly through a manhole in the street. Other images depict the LaFargue Mental Health Clinic. I had never heard of it. The volunteer psychiatrists and psychologists who counseled clients there also conducted some of the experiments that were essential to Thurgood Marshall’s argument in Brown v Topeka Board of Education. African-American children were offered a choice between two dolls, one Caucasian and one with dark skin. The children chose the light-skinned doll overwhelmingly, and the doctors at LaFargue determined that the impact of segregation on children’s self-esteem negated the idea that separate could ever be equal. The motto of the LaFargue clinic was “Transform despair, not into hope, but into determination.”
Every parent of a child with special needs begins, I believe, from a position of despair. We all want doctors and therapists and teachers to provide us with hope. If we are lucky, we will find some who do. Most of us, however, have horror stories to share from our children’s diagnoses. And maybe those doctors do us a favor with their insults and pessimism; perhaps their prognoses fuel our effort.
Every parent of a child with special needs who has worked tirelessly for a “better-than-expected” outcome for a child knows two intertwined truths: hope gets us nowhere; only determination moves us forward. If we are not determined to see our children thrive and only hope for the best, nobody else will see their potential. We only get more if we expect more.
* The story does not (yet) have a happy ending. A few days ago the mother received her son’s final grades, and he once again failed sixth grade due to his English score. Too much missing homework. The case manager has already admitted that she made no effort to provide the legally-mandated aide who was supposed to help with organization and follow-through, so more meetings are scheduled and a pro-bono lawyer is taking over the case. I do not think the school expected a fight. Any more than they expect this child has the ability to succeed.