The yearlong research we did with the parents of disabled kids revealed many things to us. Some of them are no surprise to anyone who has a family member that suffers from a chronic illness but to the general public and the folks who are professionally involved with there families, it seems to be completely foreign.
America and other western nations tend to operate on a model of humanity that assumes that having a a sick person in the family leaves everyone else untouched. As a family therapist I studied a philosophy that assumed the opposite. It is built upon the notion that any activity, action or event that impacts one member of the family affects every member. The most common metaphor is "Throw a rock into a pond and the waves touch every part of the pond.
This also goes for generational behavior. Sin, guilt, death, destruction and pain, if not resolved in my grandparents generation, will flow down into my parents and from them into me. The transmission process is largely invisible and silent but not impotent. My dad's father died when he was a small child and it left Dad with unresolved grief, pain and anger that never completely dissipated. Then his first born son died at birth and the grief was revived and virulent.
My Uncle suffered from a fever induced brain trauma that left him intellectually at age three or so. It impacted my Grandmother's life drastically. It led to an early death and enormous family suffering. The research we did showed just how drastically and dramatically rearing a disabled child can impact the rest of the family members.
Some 21%, 500,000 children, one fifth of all kids in Ohio from birth to 17, have a medical diagnosis. We assessed the psychological, social, spiritual and physical needs of these families and discovered the following facts: Families with a disabled child have many unmet family support needs. A child with a disability and their relational support system decreases by ½ at the onset of the illness. This is the opposite of what is needed. Poor families suffer at even greater rates. We also found that parents are:
a) Isolated, lonely, and depressed
b) Stressed by complex,
time-consuming responsibilities parents spend 30 hours each week caring the the child.
c)
Experience great financial pressure due to high medical demands of $30,000.00
annually
d)
Lack the desired emotional & physical support from friends and family
e)
Lack desired spiritual support from churches and spiritual leaders
f)
Have higher rates of medical use
g)
Have higher rates of marital conflict, dysfunction, and divorce
h)
Are confused about how to get the support they need
Anyone interested in supporting these families can begin by being friendly and doing practical things to help them. One of our research families told the story about a neighbor whom she did not know well but who came over and raked the leaves in the yard in the fall. Another neighbor helped catch the dog when she ran off. Another brought food and another drove mom and baby to the doctor.
You do not need a full blown church ministry program. Try being nice, kind and helpful.
If you want to learn more go to the web and read the materials in the VIP Family Life section. For more on the biblical views of the family system get my books. Look for the video on the You Tube site linked to our web. We have over 20 free videos.
If you want to start a program in the church see Joni And Friends.
Gary Sweeten
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