The role of caregiving is one that is universally experienced by people throughout the lifespan. Former United States First Lady Rosalynn Carter once stated “There are only four kinds of people in this world—those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who need caregivers.” Caregiving in itself is incredibly diverse. The organization which gave us the support to work towards MyTime, The Lindsay Institute, specifically focuses on the complex issues associated with caregiving for the aging population. We are designing the MyTime app to appeal to this type of caregiver as well as all the other types of caregivers out there.
I am currently completing a degree in occupational therapy, and the final stop in my schooling is a three month internship at an outpatient pediatric therapy clinic. This experience is making me especially attentive to situations of caregivers to children with special needs. Parenting is a form of caregiving that inevitably has its stressors. It often requires you to put another person’s needs in front of your own and your opportunities to indulge in personal interests become more limited. As children grow and become more independent, parents can expect to regain some more free time in their schedules. Parents can reasonably hope that their children will eventually become self-reliant adults who might even offer caregiving to their aging parents in the future. Raising a child with special needs often looks very different from this typical path in parenting.
Achieving independence might not be a reality for some children with special needs, and many parents must often continue to put in tireless effort to care for their children even after they become adults. These parents are likely to have worries about their children’s futures, which contributes to day to day stress. While some children with disabilities have the potential to grow into independent adults with the help of various therapy services, their caregiver’s are still likely to experience burden as they grow. Compared to raising typically developing children, the day-to-day demands of parenting are often greater, which puts parents at a greater risk for neglecting their own well-being.
During my internship at the pediatric therapy clinic I work with children with a range of disabilities and a range of potentials. I see children with a variety of diagnoses including Autism, Down Syndrome, Cerebral Palsy, ADHD, Kabuki Syndrome, Hypochondroplasia, and Global Developmental Delay. I communicate closely with their parents, and get a glimpse into their lived experiences in parenting. Some must drive over an hour every week to bring their child to therapy and some parents travel to several different places each week for their children to receive a range of services. Some of these parents are raising several children, and a few have two or three children with disabilities. I talk with parents who have developed depression during their parenting process, parents going through divorce, and parents who have noted that they feel isolated and have difficulty making friends. Every so often when I talk with a parent, I think of the App we are working to develop. I think of how our idea could help facilitate self-love and social connectivity to these busy, deserving people. I can’t wait until our App is ready to be shared to similar caregiver’s across the country.
Can you take care of yourself if you’re taking care of others?, by Rory Pasquariello
For mothers of children with autism, the caregiving life proves stressful, by Terry Devitt
How to survive a special needs marriage, by Eileen Flood O’Connor