Wednesday, January 25, 2012

Henry Furuta was frantic from the moment of his birth, weeks early, in a blizzard, surrounded by the commotion of frightened parents and a medical team bewildered by a delivery unexpectedly urgent.  He was small and pale, with almond-shaped eyes like his Japanese father.  A healthy baby boy, we took him home from the hospital bundled in all the dreams and expectations new parents have for their children.

Henry's infancy was otherwise unremarkable. The patterns of movement that mark developmental milestones fell nicely in place, and Henry proved a sweet, contented baby that did all the things infants are supposed to do: smile and coo, sit and crawl and learn to walk. Even then, however, in the spaces between "normal" and "aberrant," we saw peculiarities. Henry was often described as "intense," with tremendous focus on the most minute tasks. He would spend hours placing together the pieces of jigsaw puzzles, and had a marked acumen for spatial reasoning. One particularly sunny afternoon, before he could walk or speak, Henry was playing quietly in his nursery surrounded by familiar wooden trains and pieces of interlocking track. With fidelity, we watched as the tiny baby assembled a perfectly circular pathway for his trains, each piece of track met end-to-end in a giant wooden orb. Conspicuous as it seemed, my husband and I smiled proudly to one another at the thought of our adept young son.
There were other things, too, that we euphemistically deemed "quirky." Henry delighted in books, but gave his parents required readings: He would sit only to hear "Llama, Llama, Red Pajama" and books by Eric Carle read over and over again. Any other readings were quickly dismissed. By age one, language arrived in torrents of elocution, literary works recapitulated, in crashing waves of stories and verse. He said little that was truly authentic and spontaneous, preferring to recite with absolute perfection those books he knew and loved. And then there were the exhalations of energy and sound, the modulations and noise that Henry produced as squeals and auditory tics. We watched Henry move his fingers in front of his face, rhythmically, almost melodically...and turn...and spin...and become a cluster of symptoms that would seem to yell from the threshold of autism.

As he grew, Henry became increasingly impulsive and anxious, and he began to bite other children. For the first time, Henry's quirks were no longer endearing, but problematic behaviors we had to ameliorate for the sake of sending him to preschool. He was evicted from the child care center at the gym following a bout of brutal attacks on unsuspecting peers. He was dismissed from one child care center and then another. At a particularly painful and cathartic moment, I received a call from the director of our two-and-a-half year old son's Montessori school, informing me that he were no longer welcome to attend programming and that he was, simply, "unlike the other children." Indeed. Even amid the sting of rejection, as I watched the world seal itself off from my sweet little boy, I knew I loved my son far too much to keep moving forward without the benefit of a diagnosis, interventions, and resources. We did the only thing we could, and we took our son to The Child Development Unit at the Denver Children's Hospital. We were not seeking a name for his affliction but, rather, the tools to navigate around the corners of daily life that had now become burdensome, almost caustic.
After four days of tests, watching a myriad of professionals try to reach the cusp of my son's world apart, lay fingers on his daydreams and reel him back from a mental space none but Henry may occupy, we had a label firmly affixed to his medical records: Autism. The doctors delivered the word pensively, waiting for a visceral reaction - for sobs or protests - for something other than what my husband and I delivered. We exchanged a loving glance at the boy across the room, spinning the beads on the abacus he had chosen from the CDU prize box as an award for his tolerance of the poking, prodding and mental gymnastics to which he had been subject in the preceding days. Disinterested in the moniker itself and all its implicit meanings, we moved in search of strategies to help negate the deleterious impacts of autism while allowing the diagnosis to serve as a conduit in accessing services.
Since then, we have perched ourselves at the apex of prudent interventions and therapy as a full-time job. We agreed, early on, that we would not attempt to brow beat our son into normalcy nor inundate him with all manners of arbitration. Instead, we selected those therapies we felt most prudent, and employed them in every area of our lives. We painstakingly dismantled each task into its smallest parts, teaching our son to wash his hands in dozens of tiny pieces, to put away his toys in the smallest morsels of movement, to pull his shirt over his head in fragments of stretching and grabbing and ducking beneath the collar. Our home became a Montessori, complete with the works of renowned teacher Michelle Lane, the director of the famed Michelle Lane School for Autism. We committed ourselves to the Montessori method, with Maria Montessori's words our new mantra: "Never help a child with a task at which he feels he can succeed.” Self-sufficiency became the paramount objective and, in the process, our son demonstrated competencies that transcended any appellation or diagnosis. By age three, he was reading books and doing basic addition. His hyperlexia proved a benefit, as he devoured written texts and acquired information absent the need to pose inquiries which, for a reasonably non-verbal child, proved a nearly impossible task. Henry had cultivated an eminent visual memory, enabling him to recall minute details and retain volumes of information. Bright, precocious and increasingly confidant, his autism began to evaporate once again into the realm of uniqueness as opposed to "hindrance." 
That is not, of course, to imply that life is without its challenges. We struggle constantly with the label itself. The nondescript and seemingly benign medical term of "autism" often paves the way to our son being pigeon-holed, and disclosure of the diagnosis is often met with marginalization. Most recently, we fought our way through a public charter school, which sought to deny Henry Kindergarten enrollment on the basis of his autism alone, having never so much as met our son nor read any of the medical reports detailing the necessary educational interventions. I have spent countless hours attending meetings, drafting Individual Education Plans and meeting with experts in the field of childhood development.
Then, too, there is the financial toll. The cost of raising a child with autism averages about $40,000 per year. Where once my husband and I had a long-term financial plan, with six months savings in the bank and a retirement fund at the ready, we now live paycheck-to-paycheck. Our insurance company will not contribute to our son's therapies and, as a consequence, we have lost our home and depleted all our savings in the hopes of raising a young man who might one day live independent of our support.
My husband and I sometimes long for the days when we could spend an evening enjoying the company of one another, but we are unable to leave our son with a sitter for even short periods. His need for consistency and limited use of language make it difficult for him to be in the care of other adults. This has been burdensome to our marriage but, thankfully, we have made it work for the betterment of us all.
Autism is a space pregnant with loneliness and ambivalence. The most difficult moments are those wherein the smack of judgment becomes intrusive, rubbing raw the blisters of raising a child often unwelcome in this world. Standing amid the racks at Nordstroms, gingerly trying to cajole a screaming Henry into trying on a red, blue, green coat because there are none in orange like his previous jacket, I am acutely aware of the whispers and stares. The woman, who approaches and tells me that, were her child to conduct himself as such, she'd spank his rear end. The sales clerk, waiting for us to just leave. None can possibly understand this battle nor the events that have set it all in motion...and none can understand that through my humiliation, frustration, absolute blinding love for my boy, there is a glimmer of relief to hear my son's hear him speak at all.
Even in the light of all our son's talents, we are not deluded into believing that his life will be simple. At the same time, we have promised that Henry will never be limited by his diagnosis. An excellent runner, we signed our son up for track and field. He plays violin. Henry loves to swim, and takes lessons every year alongside his neurotypical peers. Our lives don't rest in the doorway of autism. Rather, we have done our best to throw open the doors of the world, to enter the space occupied by "the rest of us," and to make a seat for our son alongside those without autism. We recognize that our son's life will be unique, but we are certain, too, that it will be one of Henry's choosing.

No comments:

Post a Comment