“Don’t Bother,” Challenges of the Invisible Caregivers

By Pamela D. Wilson, CSA, MS, BS/BA, CG

“Don’t bother working with her you got what you got.” Distressing words—some might call advice—from a physician informing a couple, who were my friends, that their daughter was diagnosed with autism.

Fortunately they ignored the physician’s advice and made every effort to beat the statistics. Their daughter, at the age of 20, was able to be part of a work program that teaches individuals to move through the job application process and interview for full-time employment with a local hospital empathetic to their daughter’s diagnosis yet appreciative of aspects of autism that made her a perfect fit for a particular position requiring attention to detail. Many children with developmental disabilities are unable to complete school or to participate in paid employment.

According to the CDC (2015) one in six children aged 3-17 have one or more developmental disabilities that result from an impairment affecting physical and cognitive skills, learning ability, language skills, or behaviors. Common disabilities include intellectual disabilities, cerebral palsy, autism, Downs’s syndrome, and disabilities by other names.

Parents of disabled children learn to respond to behaviors, juggle hectic therapy schedules, experience financial challenges, discrimination, and many times long waiting lists to be accepted for community services or to process social security disability or Medicaid applications. Many couples divorce as a result of the stress of the situation. Many lose friends who are unable to understand the challenges of the day to day situation of raising a developmentally disabled child.

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