Support Networks

 

 
​By Paul D. Leichty, ADNet founder and former Executive Director

Call for Help

Out of the blue comes a call with frightening news. “My child has been having some difficulties…the doctor thinks…” “Our baby has Down Syndrome…” “I just found out I have multiple sclerosis…”

How do we as pastor, church leader, or concerned church member respond with care and guidance in such situations? Caring for families affected by disabilities can mean discernment about whether and how much their needs are for information, a presence, practical assistance, or encouragement.

What can I say?

When we care deeply but have no life experience with the conditions before us, we are at a loss. We may think, “I have nothing to offer in the face of such hard circumstances,” so we say nothing.

Or advice and a quick fix may be our first impulse: “You just have to…” “You can’t let him…” “Try this…” But advice is likely the last thing the person needs, and may miss the mark entirely when we have no personal experience with the issue at hand.

A helpful approach is to be honest and say, “I don’t know what it is like…but I care!”

The common journey

One way we can show care is to help the person connect with networks of people who can offer encouragement and support especially because they have “been there.” Persons who have experienced a similar life journey are equipped to give (1) information, (2) a presence, and (3) encouragement. I’ll illustrate with stories from my own experience.

What’s that?

After years of searching for answers, we finally received a diagnosis for my son at age 12.  The natural response of family and friends was to ask, “What’s fragile X syndrome?” The medical specialist who made the diagnosis gave us a few facts, but the condition was not well understood, even in the medical community. We needed more information.

Our family had barely heard of fragile X, and we knew no one else with fragile X. So our first need was an information network.

For common conditions, we may find local sources of information by looking in the phone book. For rarer conditions, we may need to look farther afield.

In our case, we met other families affected by fragile X online. At that time, the World Wide Web was still new. Today we connect readily through a website; in 1990, an email list was the best way. We learned about an emerging organization for families with fragile X. We attended its international conferences to learn about the latest research and to meet other individuals and families affected by fragile X.

Being there

Information networks can also provide an initial supportive presence. However, we found that conferences every few years and email exchange with persons whom we hardly knew were inadequate to support our daily journey. We needed people we could actually see and meet with more often.

So we joined a family support group that met 4-6 times a year. We joined with these considerations:

  • We were not looking for more information about fragile X here.
  • We realized families affected by other types of developmental disabilities lived with many of the same issues we faced.
  • We sought out folks with a similar faith perspective. We wanted the support of persons who shared our faith and values.

Such face-to-face support gave us personal relationships with understanding people to help us process the information we were receiving from the issue-specific but more distant groups.

Courage for the next steps

Sometimes even informational networks and disability support groups are not enough. We often need to process intense feelings and major decisions with those who know us well. A church small group or supportive care group formed to support our specific needs can provide encouragement. At times, we may also benefit from professional counseling.

I will always remember the counsel of a psychologist who was helping me live with a lack of information about my child’s peculiar disability. “You have done all that can be reasonably expected of parents… For now, you can set that aside. You have two children. Take them home and love and care for them the best you know how.”

 Related topics

 Opening Doors

 Connections