Picture 34

“THAT’S EASY FOR YOU TO SAY! IT ISN’T YOUR CHILD HAVING UNCONTROLLABLE SEIZURES ON YOUR LIVINGROOM FLOOR!!”

My usually quiet voice blasted Lew’s pediatric neurologist.  A stunned silence followed on the end of phone line.  But he had a plan.  He shuffled distraught parents off to a Medical Social Worker the clinic employed part time

Cindy Salvucci worked for the Pedicatric Neurology Clinic at The University of Kentucky.  Mostly she did crisis intervention but she also did free ongoing counseling with a few patients and family members once Dr. B. labeled them as “in crisis.” I qualified.

He asked me if I had someone to talk with about my feelings.  “No.  I had a counselor but he went to Russia.”  I thought what I really needed was someone to talk to about my son’s seizure medication but soon after that I did meet Cindy and begin talking with her regularly.

My previous counselor was a good listener but he didn’t know anything about disability issues and families in chronic trauma.  He basically didn’t have a clue about anything I needed except that I did need a good listener which he was.  I don’t fault him for what he did but when I started talking with Cindy I realized how very much I needed to be talking with someone who was more in the know about my particular pain.  She was also a wife and mother and that helped, too.  The other counselor was a single childless male.

The best thing Cindy did for me was to gently and kindly, on the basis of our long association, let me know that I could no longer safely care for Lew at home.  I don’t think I could have heard this from any other person.   During Lew’s third hospitalization of 1990 and the last before he went to live at the Home of the Innocents, Cindy came to Lew’s hospital room at the UK Medical Center.  As a social worker who worked with outpatients, she didn’t have official responsibilities for her patients once they became inpatients.  She came to visit as a friend.

Standing next to Cindy looking down at Lew in the bed I said: “Cindy, we are a family that is about to fall apart.”

Putting her arm around my shoulder she said: “No, Cherry, you are a family that has fallen apart.”

Hearing her say it with such gentleness and empathy, I was able to recognize that it was true.  We couldn’t go on as we had been.  It was not safe for us or for Lew.  We were “in a heap on the floor” as I came to describe our condition.

“Well, what do we do?”

“I’m not sure but I’ll find out.  There are a couple of placement possibilities, I think.  I’ll have to get the inpatient social worker involved.  I’ll make some calls and talk with her.”

We exchanged several phone calls that day as Cindy began to research our options.  The next morning the inpatient social worker came in.  It seemed to me that she “bopped” into the room.  I’m not even sure she introduced herself.  I do remember her exact words and that they caused me to burst into tears.

Sounding to me entirely too chipper, she said: “I understand you’re ready to talk about out-of-home placement!”

NO!  I was not READY!

She got very flustered, said she was sorry, that she must have misunderstood, and excused herself.  When she came back, she had Cindy in tow.  Cindy was able to translate what I needed and wanted to this other woman who I felt spoke a totally different language.

Even in my exhausted state I was not “ready” to talk about out-of-home placement.

I doubt if I ever would have been had Cindy not gently shown me that I was.