pioneer parents in indiana By Edith Glover
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Edith Glover Forty-seven years ago, the birth of my son Lyle simultaneously ushered us both into a new life and reality. For him, a world yet to be learned, and for me, a world I incorrectly thought I knew. Three years later, both of our worlds would be transformed and reshaped by his diagnosis of autism. May 28, in the delivery room, I was tired but excited to finally meet the active little stranger, the mysterious “in utero” being that rhythmically stroked against my rib cage nightly with distinctivelyfelt tiny fingers. My obstetrician disputed my detailed descriptions and attributed my experience to a mother’s “vivid imagination.” Nonetheless, I remained steadfast in my belief, and the first moment Lyle was placed in my arms, he wriggled into position, placed his hand against my rib cage, and began that familiar sequence of strokes. A mother knows! A diagnosis eventually came after three years of vague “he falls through the cracks” observations offered by various specialists that examined him. He was a very energetic, loving child but speech development seemed delayed. He enjoyed family gatherings and was very social, yet seemed uninterested in most toys. I had first suspected autism at seven months when Lyle found a piece of yarn that was lying on the floor and repeatedly began to twirl it in a very preoccupied manner. I had previously observed this same behavior as a nursing student from a child with autism that was being mainstreamed into the daycare center’s training site. Lyle’s pediatrician wasn’t concerned and dismissed my fears when I 32
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discussed the incident with him as me being “overly concerned.” Again, a mother knows! With the support of my mother, Lyle’s beloved “Granny,” we survived numerous distressed teacher calls and attended numerous meetings regarding Lyle’s behavioral issues at school. As a six-foot-tall black male, he was viewed as intimidating and often sent back home, although we had few issues with Lyle at home. He was cooperative, happy, and entertaining. His teachers didn’t or wouldn’t believe me when I would describe to them his demeanor in the home environment. The school, still operating with the institutional mentality that prevailed at the time, saw group homes as the only community living option for individuals like my son and, on one occasion, even suggested a school program at Central State Mental Hospital as a placement for him. It didn’t occur to them that I never attended any of our numerous meetings in a full-body cast, bleeding and bandaged, or considered the fact that Lyle lived safely with a menopausal mother and a 65-year-old grandmother every day before coming to school! They never entertained the idea that possibly the noisy school environment and inadequate programming could be the cause of his behavior. Eventually, his teachers found Lyle’s father, who was not in his life beyond court-ordered support payments, and together they successfully orchestrated a mandated group home placement for Lyle despite my vigorous and expensive legal opposition. It was a judgment from probate court to place Lyle in a group home because “I loved him too much to let him grow.” Such placement was painted by his father’s lawyer to be the “same as going away to a college dorm,” and with a pointed finger, I
was threatened with contempt charges if I interfered. Abruptly, after this decision was made, this same probate court, which normally didn’t handle such matters anyway, officially announced it would no longer handle cases such as ours. Our hearts and our family were shattered. I was forced to stand by as Lyle’s estranged father, now his court-appointed guardian, sanctioned the administration of chemical castrating hormones and large doses of psychotropic and sedating medication that ultimately led to a seizure in order to make him less resistant to his unpleasant “dorm room” surroundings. At one point, Lyle escaped from the transport van into dangerously moving traffic, trying to get back home before the staff caught up with him. Finally, Lyle was returned to us — damaged, confused, and angry, 2 ½ years later. Again a support system failed us. I took family leave from my position as an occupational health nurse to not only care for him but for my mother also, now partially incapacitated by a stroke. Unable to find reliable in-home help, my employer generously extended my leave, but our situation only worsened. In 1995, Mom sadly passed away. I was grateful that Lyle got to have some time with his Granny before we lost her. Without her help, it became necessary for me to take early retirement in order to care for Lyle, as the service agencies that were supposed to be able to meet his needs were not reliable. Questionable staff was sent to our home, and valuables were being stolen. I even had to get professional house surveillance while I attended my mother’s funeral because the agency’s staff person was found to be a fleeing felon and shortly thereafter was arrested for theft not only from my home but from the homes of other families.
