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The Parent's Corner Running a Support Group for Youth and their Families by Mary Robinson, MS Ed Published in Lyndonville News, May 2000
When our son became ill in 4th grade we felt very much alone. As parents, we didn't understand what was happening, and trying to make sense of the illness seemed incomprehensible at times. Compound that with the school issues, the unsolicited advice from friends and family, and the waxing and waning of symptoms and our plate seemed more than overflowing. As we tried to navigate those rough waters we felt an overwhelming desire to talk to other people in our situation. As we knew of no others, we consulted our doctor to get the names of patients in the area that suffered from this devastating illness and would be willing to share their experiences with us. We spoke to some patients and parents of children with CFS on the phone. They were kind and understanding and offered us ideas on how to begin to cope. One lady also suggested we contact a local children's support group leader in a town nearby, which we did. I called this mother, not knowing what to expect. Would she be tired of dealing with her own child? Would she have time to talk to me, to ease my worries and fears? Would she understand…? I shouldn't have worried for in talking to this wonderful group leader I found a warm and compassionate mom. I knew I wanted to meet her. I learned that she held meetings at her home every other month for children with CFS and their parents. My son and I made plans to attend. At our first meeting there were about a dozen parents and kids in attendance. I was overwhelmed! I couldn't believe how many others were in the same boat that we were from school issues to dealing with the family. I once asked my son, who was always so quiet at the meetings, if he enjoyed coming. He said yes, because it made him feel that he was not alone: that he was not the only kid facing this illness. The group had been meeting for a number of years now, and had quite a few people on it's mailing list. But aside from our first meeting, the meetings tended to be small. This is a problem with support groups for CFS. Often kids are just too sick or fatigued to come or if they are feeling well they don't want to waste that "up" time going to a meeting about their illness. But we continued to attend on and off for a year. The leader's daughter was doing very well and had recovered to 95% of what she had been at her most ill. She was attending college and very happy with her life. This was promising for us. As the months went by I learned of people in our area who had children suspected of CFS. I had recently retired as a La Leche League Leader where I'd offered support and counseling to breastfeeding mothers for 10 years. Helping others was in my blood and I longed to find another way to support parents in need. I didn't have to look far. Jean kept telling me whenever I was in the office that I should start a local support group for families of children with CFS closer to our home. She assured me that there were people who would come. It bothered me to know that they were seeing enough new children in the area to warrant a support group, but I felt compelled to consider this idea. I spoke to my husband and my children first. My son was interested in meeting other kids in our home, as long as there were goodies and treats like the other leader had always provided at her home. (He was a kid!) My healthy daughter wanted to meet healthy siblings, my husband and I wanted to meet other parents, and the other group leader wanted to turn her group over to us. So we embarked on our new undertaking. If in reading this article you are saying to yourself, "I would love to do that for my child and myself," then I suggest you start planning. It was one of many things we have done that had a positive impact on our lives. And we learned some things along the way about publicity, meetings, and general tips that I'd like to share with you in case this is something you would like to consider. FIRST PLAN THE AUDIENCE FOR YOUR MEETINGS. Some groups are for the needs of the children with CFS, others for the parents. Ours was for the family. We each had a desire to meet others in "our" situation so we set our scope as a "family support group for children with CFS and their families." Not wanting to be overwhelmed with meetings we opted to meet 6 times a year on the first Sunday afternoon of every odd month. NEXT PLAN YOUR PUBLICITY EFFORTS. First I did up a flyer and asked Jean to convey news of our new group to patients that she felt may be interested. I developed a brochure on my computer that I printed on colored paper and sent to all the members of the original support group and anyone who had been in contact with me. I also put a stack in Dr. Bell's office and the offices of other physicians in the area. I placed a few at the local library, the hospital, the school nurses' offices and anywhere else that had a place for brochures. We put an article in our local paper about the new group and the purpose of our meetings, and then we waited. WE PLANNED AHEAD WITH HANDOUTS AND GOODIES. My husband and I scoured our resources of handouts from national and local CFS support groups and ordered brochures, phamplets and flyers. We set out a display on our dining room table of books we owned and copies of all the free handouts. We also kept a list of the names, addresses and phone numbers of anyone who attended our meetings along with the ages of their child with CFS. The snack food was of course, the highlight of the meeting for our kids. AT THE MEETING WE OPTED FOR AN INFORMAL AGENDA. Our meetings always consisted of our family and one other local family. We often had another 1-2 families out of a half dozen who would travel up to 1-2 hours to join us for the unique support that a group for kids with CFS offers. The topics were always easy to find, and ideas always plentiful in how to cope. You can even write up a list of possible topics from looking in the National Groups' newsletters and write them down on poster board to spark a conversation topic. In our group, school was a main topic of conversation and my husband's occupation as a High School Guidance Counselor was very helpful to parents trying to work with the schools on graduation requirements. We also talked about hopes and dreams and how to support them, and how to deal with the crushing blows when they do not materialize as planned. The kids that came sometimes joined in our conversation or they gathered around the computer doing their own thing. Their agenda was to forget about CFS and just have fun! I always felt stronger after these Sunday gatherings. I felt like others understood, and had survived and we could too. There were kids who displayed milder symptoms than my children, and ones who were much more ill than mine were at the time. I felt connected in a bigger way and felt compelled to continue to devote my life to not just surviving as a family, but helping others to survive too. MAINTAINING CONTACT in between meetings we tried to touch base with people who had contacted us by phone or email. I would send out thank you notes for joining our meetings with additional information they may have requested, and I sent reminder notices of upcoming meetings a few weeks ahead. We included interesting information about what was happening in the world of CFS and in our local area as well. We encouraged parents to call if they needed anything, and to join us if they were interested. We continued our meetings for 2 years until our son lost interest and attendance started to wane. In place of formal meetings we still hold informal outings with the family who always attended. We will go out for dinner and just visit and catch up on life with CFS. Our daughter still meets with their daughter for lunches and piano lessons when they are both able. And some of the other children in the group still keep in touch with our kids. It was a very positive experience for our entire family and one I would do again, if enough families expressed a desire to do so. I think the road to coping is in sharing and connecting with other families. We may have different ways of living with this illness, but communicating and touching the lives of others has been the key to my family's survival. Maybe you would like to consider it for yours too! Footnote:
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