I applaud you and every volunteer associated with Pope’s Kids Place. All should be extremely proud of your collective work to make a huge difference in the lives of families with special needs children. The program is one of a kind, and to my knowledge, not replicated anywhere else in the Country. As you know I speak from personal experience.
We have been friends for over 15 years so you have known our beautiful daughter Kayla her whole life. Kayla was born with Dravet’s Syndrome, an uncontrollable epileptic disorder coupled with severe developmental delay, autism, and a myriad of other heartbreaking maladies. Kayla is 14 years old now, still in diapers, and while she usually ambulates on her own, she’s otherwise completely dependent on us (or other adults) for all her needs. She has had multiple surgeries, including one to install a device that regularly sends electrical impulses to her brain (to try to forestall the seizures), and is on daily doses of medicine (with unfortunate side effects). Kayla has a vocabulary of maybe four or five words so her only means of communicating are by primal grunts, groans, squeals, or laughter. She will likely live with us until we are too frail or incapable of caring for her and then will sadly be institutionalized somewhere.
As you can gather by my description above, having a special needs child with severe disabilities is utterly devastating to a family. Most “normal” families can remember when their kids were infants. Typical adult and regular family activities were reduced by what I call “the lowest common denominator”. In other words, the constant needs of an infant limit the types of activities that parents and families with other older children can participate in. But, in time, infants progress and parents and families return to normal life. In the case of families like mine life is PERMANENTLY reduced to “the lowest common denominator”.
Equally discouraging is the never ending quest to find and afford services available for these children and families. Finding help is so overwhelming I almost can’t put words to it. The complexities of finding services through Federal, State, County, City, School District, or private agencies, and then navigating all the qualification requirements only to be denied, or offered minimal funding, or experiencing constant program changes, or driving long distances, or experiencing repeated staff turnover, or other issues often demoralizes parents to the point where they stop trying. Parents get worn down because they are so consumed 24/7 caring for their special needs child, trying to raise their other kids, holding down a job, paying bills, and dealing with whatever else life throws at them. The biggest casualty is often their marriage as the husband and wife are so emotionally and physically spent that they have nothing in reserve to give to each other and have no time to spend together as a couple.
My own experience is unique because of my professional background. As a former hospital CEO and someone who has spent a 30+ year career in the healthcare field you would think I would be able to easily access any and all services available to Kayla and/or our family. Unfortunately, I’ve learned firsthand why parents like me feel helpless when trying to find help. My career has taken us to multiple States so I know how difficult it is across the Country to get any support.
The whole concept of a Pope’s Kids Place providing unquestionably necessary services (regardless of ability to pay) to families of kids with special needs is truly a godsend. An organization and program like yours is like finding the proverbial needle in a haystack. Each and every volunteer and staff member should know that every ounce of energy and every dollar raised resonates 1,000 fold back to the special kids, parents, and families you so generously serve. By all means keep up the good work. . . it is very much appreciated!
Most Sincerely, Randy Middlebrook