Pioneer Parents of Indiana: Meet Edith Glover

By 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 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.

The money from my retirement package was just enough to pay our bills for one year. Somehow I would have to find a way to support us. I researched and explored many advertised work-at-home jobs, but none seemed satisfactory. I also stayed abreast of matters pertaining to the Medicaid waiver program and discovered that the state of Indiana had recently begun a program that would certify qualified caregivers to work as independent contractors. I applied, became certified, and began my new career just in time. I was down to my last pension check in the bank.

As I became more familiar with the system, the gap in African American families being made aware of waiver services was very noticeable. Because of this, I began to hold informal meetings and frequently shared my knowledge with other families and interested caregivers. My own contractor status continued until the state announced plans to discontinue that program, and the new guidelines would require me to become a certified provider agency if I wished to continue.

With encouragement from Lyle’s case managers, I began the arduous process. The deadline for the application coincided with the Y2k computer uproar, and I worked day and night for two weeks straight to finish the required paperwork and policy manual. With computer skills limited to an occasional badly aligned party flier, I was sorely put to the test but got everything completed. My application was reviewed and returned to me for corrections on several occasions before I received the final certification in April of 2000 as an agency, LEL Home Services, LLC.

It was well known that some members of the state’s administration were opposed to parents being the paid caregivers of their adult children at the time, and I’ve always questioned if this may have contributed to the delay of my certification. An individual and non-parent that I had previously informed about the existence of the waiver and assisted with their application paperwork, which was very similar to mine, was certified weeks before I was.

Later, the “parent thing” became the “who lives in the household thing,” and I was told by one state representative that Lyle would have to live in totally separate quarters in order for me to be his caregiver. The full apartment with the private entrance I had previously added to our house early in his diagnosis, in the event he would be able to live more independently someday, was deemed insufficient. The fact that his many challenges would pose serious safety issues if there was not a way to easily get access to him in an emergency did not change that representative’s opinion.

The very next day, I called city zoning, obtained a separate street address for his apartment, went to Lowes, purchased a $20 sheet of plywood, immediately nailed it between our connecting doorway, and called the representative’s supervisor. When he came to review Lyle’s “man cave,” he expressed surprise that there had ever been any issues and stated he “wished everyone could have it like this.” To this day, I refer to that piece of plywood as my door to opportunity.

LEL Home Services originally and successfully operated without true employees from 2000-2008. Under this model, families and caregivers were independent contractors, had more usable household income, and our company overhead expenses were low. The state, however, feared that we didn’t have adequate oversight of services and required us to have the typical employeremployee business model.

It took a while to realign, but we were able to sustain ourselves, and since that time, we’ve grown immensely. Our company began as a family-owned and family-oriented business and remains so. I am proud to say we care about each other in addition to caring for the people we serve, and that has been the secret to our success. Lyle, at age 47, is handsome, happy, and recognized as the Honorary President of our company. He loves music, especially the blues, and frequently serves as my co-host for the live music events we offer to seniors and those with disabilities through our nonprofit organization, The Lena and Lyle Institute Inc. The Institute was founded in tribute to Lyle and my mother, his beloved Granny.

Today, our lives are quite full. We are surrounded by caring, supportive friends and very fortunate to have such wonderful, dedicated employees taking care of our family-owned business. Their knowledge and expertise continue to make meaningful and positive change in the lives of others, and I am grateful.

BASTET

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