Inclusion and Exclusion in Our Daily Lives
PART VI: PARENTING
DONALD R. VOGEL
I was enlightened by a flash that came with a black eye at 11 years of age. Unlike Saul who became a saint on the road to Tarsus, mine wasn't a divine light, and I wasn't born anew until the day we went to see my eight-year-old son's first school play. On that day, I experienced a profound sense of detachment; more so than usual. We had arrived to a parking lot filled with families on their way to and from various sporting events. They were PTA; we were Special Education PTA (SEPTA), exiled to a dark auditorium on a warm sunny day. What was it that exacerbated my otherwise manageable sense of estrangement? The son whom I love unconditionally had become a symptom of my "condition."
The pugilistic source of my conversion was provided by Freddy G., the neighborhood jock-bully of my youth. If memory serves, I was minding my own business when he responded to some still unknown provocation on my part. He shoved me and was about to start swinging when he was pulled away by other kids. This harassment continued for a few weeks until I wearily acquiesced to a fight. One punch became a life of self-conscious misperceptions: eschewing Freddy at first, everyone else thereafter. Mine has been an existence filled with a bipolar estimation of self worth and an ongoing conflict with the necessity of community. What happened to me was avoidable. This is not so for my son, Alec.
His black eye has an appellation, PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specific). PDD is the rubric for the spectrum including Asperger's and Autism, each with its own levels of functionality. NOS means that Alec can show signs of different conditions but not enough to fit any particular categorization. Outside of some quirks, running back and forth when he is excited, talking to himself, or making statements without eye contact and proper intonation, Alec is higher functioning and attends integrated classes at school. Special Ed is only part time, but a full time stigma nonetheless. Alec's greatest challenge, like mine, is social. What I fear for him are labels that are clinical or derisive, real or misperceived, especially if they become a self-fulfilling prophecy.
It doesn't help that Alec is an only child, leaving him without the healthy interaction of an older or younger sibling. After we had him, my wife, Linda, and I were worried that a next child could have worse developmental difficulties. We know firsthand what that means. My stepbrother's son is severely autistic. He is six months older than Alec, still soils himself and says "dit-dit-dit-dit" with varied inflection to communicate. The slightest variations in routine send him into a flailing tantrum. My stepbrother and his wife probably have a hard choice to make as they get older and their son gets bigger and stronger. Not to undermine or make light of their situation, but to me, the demarcation for them is clear. Alec's and mine is not quite so.
There are moments when his quirks make him stand out from other children, especially those kids raised in the soccer mom realm. Alec still doesn't seem to get sports. He's done tee-ball, and with additional practice, even made it through a season of coach pitched baseball. However, Alec needed constant reinforcement, like when he was on the field and talked to himself, looked at ants, or pulled down his pants to scratch an itch. When he was aside with the other kids, they would talk about the game and he would engage in solo light saber duels. The dilemma was whether to yell for him to pay attention or not draw the attention of others.
Then there was my lack of common ground, as well as my now ingrained aversion to, the ex-jock parents of the future jocks. When they weren't, in my perspective, noticing Alec, they usually complained among themselves about the burden of chauffeuring kids to multiple sports or social events. My son doesn't get invited as much to the shared activities that build just as many adult associations, so I always seem to be wondering what I could add to parental conversations. What I want to discuss is what other parents take for granted, like when Alec finally outgrows something. Unfortunately, another idiosyncrasy soon takes its place.
Yes, SEPTA is certainly the circle we travel in. Linda is a vice-president, and she spends a lot of time doing fundraisers, attending meetings, and everything else regular PTA members must do. Usually, a certain detente prevails between SEPTA and PTA until school budgets are being jeopardized. I remember one especially contentious meeting I once saw on the local news where an overaged jock said "why support retards when my kid's chance at a sports scholarship is at stake." My response would have been, "...and there you have an example of what happens when the special education budget is cut."
So why only recently did I feel alienated arriving for Alec's play? I think it was the context. It was an existential moment that was the culmination of myriad misperceived encounters, from seeing kids look askance at Alec to my imagining that collective joviality ceases or ensues when I try to join a conversation. All of this was compounded by the shear scope and stark reality of their normal. Fortunately, the feeling dissipated when the doors to the theater closed and I was immersed in the profundity of ours.
The performance was a variation on Snow White and the Seven Dwarfs and the kids represented a variety of challenges and disorders, bouncing off each other like multiple silver orbs in a single pinball machine. The performance included all the classic gaffes such as the many variations of the "Is this on?" from the microphone backstage. This had something more. There was the autistic boy dressed as a rabbit who had more fun bowing to the crowd after the curtain came down between each scene. Not to be outdone was the Down's Syndrome boy who, when he wasn't restrained, yelled "Bonsai!" and tackled the errant rabbit. Another girl was joined by several oblivious woodland creatures doing a lanky dance in the aisles. There was nothing but pride and empathetic bemusement from the audience, which I found infectious.
Alec played Pythagoras, the dwarf who calculated everything. I was pleasantly surprised when he remembered all of his lines, faced the audience when he recited them, and gave all statements their proper humorous inflection. The audience found it entertaining rather than comical. Do you think I could learn something from any of this as metaphor?
What is hopeful in this story?
When does identification with someone increase one's sense
of isolation, when does it reduce it?
Do you see the father in this story as courageous?Does he see himself that way?
What metaphors do you see in this story as a whole that
speak to elements of your own experience as a parent?
My article, "The Others" describes an evening two years ago
when I went to a play my son, Alec (now 9 years old), was in. It was produced
by the special education parent teachers association (SEPTA) in my school
district. Attending that
production was the first time I was struck by how literally "different" or
separate SEPTA families were from the mainstream ones. It was also a reminder
of how isolated I felt at times from a regular discourse with common social
norms and interactions. Writing
the article reminded me of how small (petty/) my issues are compared with my
responsibilities as a parent, even though those issues are part of who I am. If
I am not successfully extricating my personal challenges from my role as a
father, I hope I am at least learning to accept what I can and cannot change
and moving on from there. My son
is my inspiration for the effort.
DONALD R. VOGEL holds a masters in English from Stony
Brook University. He has been published
in the Houghton College Lanthorne and
is recent alum of the Stony Brook Southampton Writers Conference, where he
attended a workshop in short fiction with Amy Hempel. His day job is Director of Development for
the Long Island Children's Museum. Don
lives in West Islip, New York with his wife and son.