Who are "Perpetual Parents?"

"Perpetual parents" are mothers and fathers who find themselves parenting adult children with disabilities.   We have been advocates for our children from "womb to tomb" and as we begin to look toward retirement, we also continue to parent adult children who require our support seven days a week, 24 hours a day.  When the boys were 4 and 7 (picture below) parenting was part of the "deal." 

 Today I am 58 years old, and I continue to parent two amazing young men.   I am the mother of Brett, a 35 year old veterinary specialist who lives in Dallas, Texas.  I am also the mother of Barry, a 32 year old wonderful man who continues to live with my husband, Rich and I in Peru, Illinois.

Unlike Brett, Barry was unable to experience college and to establish himself in a profession due to his disability.  Barry has cognitive challenges and is non-verbal; which doesn't stop him from rooting for the Green Bay Packers, Chicago Blackhawks, enjoy Bruce Springsteen, collecting more movies than Blockbluster or working his regular shift for the past twelve years stocking ice cream at our area's largest grocery store.

What are the challenges of being a "perpetual parent?"

• Because of the baby boom and medical advances, experts predict that the number of people age 60 and older with developmental disabilities, cerebral palsy and autism will double to 1.07 million by the year 2030.   Some 80 per cent of these adults are living with relatives or their parents now.  What will happen to these adults when their caregivers are unable to care for them or die?
• If you do not have a family member designated to provide support for your adult child, who will?
• Research has documented that older parents experience health related problems and emotional worries that are derived from the cumulative stress of care giving demands.
• Services to support families are ever shrinking due to budget demands at the state and federal levels.
• Additional costs add up for families who parent their adult children.  (Clothing, food, diapers, medications, and adaptive equipment just at the time perpetual parents need to be saving money for their own retirement.
• Free time?  How do you find the time for yourself to recharge your batteries?