Forged in the face of autism

Elvira  and I met at the beginning of a year long beginners violin class. I had always wanted to learn the instrument but could never find the time until then.She was a bubbly, smiling woman who stood barley five feet tall. A second generation immigrant; her parents originally from Malaysia. The program was three times a week and so,we spent a good amount of time in each others company.Her husband, I rarely saw but her daughter, her only offspring she was rarely without.

Her daughter was a lovely slip of a girl with beautiful brown eyes. She had a head thick with long, thick ringlets; I always wondered how her mother was able to brush. Her daughter was enrolled in a vibrant program which catered to speech, physical and occupational therapy of children with learning and broad spectrum disabilities in a private school. Prior to meeting Elvira, I knew very little of broad spectrum disorders. We spent long hours in each others company. Her spouse had a very demanding schedule and worked long hours, so, she shouldered most of the responsibilities involved with raising their daughter.

She opened the window into her world, initially I hesitated but charmed by her devotion to her daughter; I climbed through the window and joined them….a quiet spectator. I watched her struggle with the emotional and physical demands of catering to her child.

Iman was five years old but her communicative skills was, at best, that of a year old. She communicated verbally in grunts, and was not yet fully potty trained. She had a green marble she could spend hours looking at, holding it up towards the sun to watch the flashes of iridescent light. She would twirl it around on the car seat, roll it on the table during her lunch breaks. If her mother left her with her nanny, she displayed no separation anxieties. However, if she lost her marble she would scream and throw such a fit, you would think someone was trying to kill her. Her repetitive movements: rocking back and forth on her heels and clicking her tongue as she played with her marble made me ask more and more questions about autism. Elvira  supplied me with many materials on the disorder. I watched the Temple Grandin movie and read several literature. I attended symposiums with her on some weekends and my admiration for her grew.

Her marriage had not escaped without being singed with fire. The fire of  tension that came with the challenges of caring for a child with special needs. Her husband was a big, burly man with a gentle disposition. He was a great father and husband but they had faltered under the weight of caring for Iman.

She came from a relatively large family. The first of six children, her parents had been delightfully excited about the baby. It was her mother who first noticed Iman had stopped making eye contact at four months old….and then other symptoms raised their ugly heads. She didn’t respond to stimuli and shied away  from being touched. Elvira and her husband were devastated. Her parents kept on hoping, even after the prognosis. She told me she could not afford to hope like her parents did.”I won’t be able to make the right choices for my daughter if I am constantly roaming in the corridor of hope. I won’t be able to open doors for her to walk through”.

In the beginning, she  imagined something twisted and ugly in her DNA had somehow corrupted her baby. She cried till she was hoarse, cursing the body that brought forth her daughter. She had struggled with infertility for several years, you see. Several miscarriages and procedures into their marriage, Iman was born. Her husband tried to be supportive but their relationship continued to spiral. Frustrated in their relationship, he picked up more hours at his job, staying away from a wife he could not encourage, a child he could not ‘fix’ to some how compensate with more income.

She told me how on her daughter’s fifth birthday, her siblings ignored Iman. How they spent the whole afternoon oohing and aahing over her nephew who was a year younger than her daughter. I didn’t know how to empathize without being a hypocrite. One of the symptoms of autism is resistance to affection due to sensory overload. How do you bond with a child you cannot hug, you cannot kiss or show affection to? Difficulty in showing expressions of affection for a third party could be so easily frustrating. I remember a birthday party I attended many years ago with my children where a boy who suffered from some pervasive developmental disorder became disruptive. I remember his mother’s embarrassment, how she unsuccessfully tried to soothe him. I remember the knot in my belly as I tried to explain to my children he was not deliberately being naughty. My relationship with Elvira showed me where my heart had been. It wasn’t nice.

My Elvira continues to care for Iman with absolute devotion.Today, I celebrate her and all parents out there who persist in the face of adversity. Your children may not be perfect, but whose is?

 

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