Pam’s Papers – The Culture of SOFT

The Culture of SOFT

By Pam Healey

My students and my own children have had two years of world history organized around the mnemonic device: PERSIA GEM. Each letter represented a component of the culture of all civilizations. Study guides, class discussion, lectures, tests and projects are organized around PERSIA GEM. While cleaning files I came upon a study guide and began to consider that SOFT has its own culture with all aspects of PERSIA GEM represented. SOFT has its roots in Utah and has spread across the United States, Canada and Mexico, to Europe, Australia, South America and Asia and include SOFT USA members from other countries or separate national SOFT organizations. SOFT has made a large world small for families seeking others on the same unexpected journey. We are a fluid culture, based in karyotype, carried by need for understanding, comforting, acceptance, information and hope.

P is for the political, for government, for structures that offer control and security. SOFT has elected board members who serve three year terms and meet for a full day each year at the conference, reporting on their work with their committee during the year and addressing current or on-going concerns. Currently, committees include: international, local contacts, bereavement, public awareness, nominating, and memorials, gifts, family packets. Over time the committees have changed. For many years there was an adoption committee and a legislative/legal committee. There is now a bereavement committee and a webpage group. As needs change, board members join new groups to meet during the conference to define new needs or courses of action. Also, some responsibilities are carried out by people who are not on the board but report to the board. Currently, this includes treasurer, newsletter editors, conference committee and webmaster. The board members meet long distance by email discussions and by conference calls throughout the year. SOFT has a mission statement, a book of regulations; we follow protocol at meetings. We discuss, vote, plan and perhaps take on more than we can accomplish in a year. The board approves conference sites, expenditures, work with other organizations and research proposals. We discuss how to stay relevant and timely and to increase membership in a cyberworld. The board discusses the advantages of belonging to SOFT, such as outreach to those with a new diagnosis through hands-on family packets, the annual conference and the emphasis on family connections.

E is for economic, including trade, financial concerns, keeping the ship afloat. Keeping SOFT in the black remains a concern, that is, living within our means, despite the cost of all we want to do. Dues are required which are used to publish and distribute the newsletter and to provide new family packets to all those who turn to SOFT for information. There are donations, sadly, mostly memorial donations that are critical in keeping SOFT going. Some fundraising is done by members during the year. For instance, Kam’s thirteenth birthday was celebrated at the Denver Roller Dolls rink and $2500 was raised for SOFT, which is being used to update the website. Through the years toys, calendars, books and jewelry have been sold with a percentage of profits going to SOFT. We have had some regular donations for many years, including the Rochester Viet Nam Vets group who make a generous annual donation. There have been various corporate gifts from time to time, usually related to a SOFT member with a corporate connection. Generous donations come from other trisomy organizations that run fundraisers such as golf tournaments in Florida and theme parties in Wisconsin. Noah’s Never Ending Rainbow has become an important partner. Within SOFT are opportunities to help families come to conferences through the Joey Watson Fund and suggestions for local fundraising. Through donations SOFT has provided money for research.

Limited funds means cutting back at times. We remain an all volunteer organization, which minimizes costs. We are salary free, so we cannot have a reduction in force! Although we want more colored pictures in the newsletter, cost is always a consideration, so there are only 8 pages with color, usually the cover pages and the center pages. The hardest part of each conference is not securing venues, convincing speakers to present for free, holding down food and transportation costs, but fundraising so that what the conference actually costs is not completely passed on to those who go. Those who send or bring auction items, donate memorial bags, sib t-shirts, food, binders, angels or blankets all help defray costs. We have a research fund from memorial contributions designated for research, thus not available for newsletter, web, or conference. SOFT began at Kris’ kitchen table at her expense. Later, available funds were from the small membership, and legend has it, sometimes not much more than loose change. We are incorporated as a non profit and must carefully abide by the laws in terms of fundraising, allocations and expenditures. An annual budget is presented and voted upon by the board of directors, and audits are regularly completed. Like a family, community, or country, finances are a major concern, but we are carefully living deficit free, postponing some of what we would like to do until we have more income. We continue to seek a grant writer, but we know that gaining grants depends in part on membership numbers, and many who access SOFT’s Facebook, join Living with Trisomy 13 or receive family packets do not become members. This is an on-going concern.

R is for religion, beliefs, ceremonies, and philosophy. SOFT has ceremonies: the annual Saturday afternoon balloon release and now the annual parade of stars celebrating surviving children. We sit in community with our tissues for Kris’ annual video to remember, celebrate, laugh and cry. Years ago a young Josh McWha, leaned over during the video and said, “So sad, all those kids who died of too much DNA.” The video actually presents all those kids who lived with too much DNA, however briefly, and allows us to honor them all. There is a committee that acknowledges angel anniversaries. We have symbols: rainbows for surviving children and balloons for those children we carry in our hearts. Many religious traditions are embraced in a diversified membership. There is some tension around offering less generic prayers during the conference. A nondenominational prayer service occurs at the end of the conference. Becoming a parent of a child with trisomy raises spiritual questions, brings questioning and upheaval for some, intensifies faith for others and creates meaning aside from religion for still others. Many members believe they have been touched by angels and witnessed miracles. Many  believe that they have not been given more than they can handle and that their child with trisomy opened doors of opportunity that made their lives more meaningful. A number of parents have pursued careers in ministry, prompted by their experience with their child.

S is for society including gender roles, clothing, social status. Social acceptance of children with trisomy within the larger society is an important goal. These are not children hidden away, but children who participate in many activities with their families. They go to school, attend religious services, travel extensively, enjoy entertainment in the community, and participate in scouting, Special Olympics and other youth activities. Protecting and expanding their rights remains a focus. There are conference tee shirts and hats, and we wear them proudly in the hotel, to the Friday night game and picnic, identifying us as a group. As a group and individually we are a support system for those reaching out. We want more members, greater involvement of the membership and uniform satisfaction with what SOFT provides. SOFT is an important part of a larger group of nonprofits focusing on individuals with genetic syndromes, requiring medical, educational and financial support. SOFT members attend national genetics conferences to publicize the work of the group.

I is for Intellectual, inventions, technology and writing. SOFT strives to keep up with information about medical technology at the conferences and in the newsletter. Parents are given information about augmentative communication devices, websites, and medical technology. SOFT provides written information through books, pamphlets and articles. Now taken for granted, AFOs, CPAP, G tubes, surgeries for heart, spine and digestive tract were once unavailable, but now enhance the quality of life for SOFT children. On the website, in family packets and in the newsletter members and professionals write to share their knowledge and ideas. The conference workshops are invaluable in keeping members abreast of what is going on related to their children.

A is for arts, dance, music, architecture. SOFT has art. There are conference logos emblazoned on shirts and bags, and twice made into quilts. At the annual conference auction there are many handmade items, including knit goods, paintings, quilts. Families leave the conference with hand made angels. There are cards made from hand over hand efforts of our children with trisomy that have included drawings from squiggles during a Rochester conference, cards decorated by hand prints in Roanoke, and foot prints in Sioux Falls. We have a web photo gallery of those at the conference and an annual video of family photos. Family portraits are often taken at the conference. We dance!  There are hours of dancing after dinner at the opening reception, in wheelchairs, in arms and on feet. We celebrated the wonderful architecture of Sanford Children’s Hospital, and we luxuriated in the historically significant hotel in Roanoke. We  enjoyed the riverboat tour of Chicago’s architecture. We have enjoyed sculpture walks, local art museums and nearby historical houses. Our music not only includes the songs we have embraced as our own such as “Somewhere Out There” and “Amazing Grace”, but we have our own musicians, including Lauren who plays her flute before the balloon release in memory of her brother, Ryan, and earlier Bob Crissey on the harmonica. Peggy Cantrell once (just once Peggy?) shared her amazing voice and a young Ryan Donahue years ago entertained us at the piano during a long board meeting.

G is for geography, climate and food. SOFT was started in Utah, is based in Rochester, and has convened in 17 metropolitan areas in 15 states and one province. SOFT families have lived in nearly every state and many provinces.  Picking a conference site, not too hot, not too isolated, not too hard to get to, often distinguished by interesting geographic and cultural features, is always a well considered decision. Many conference goers have had their lives enriched by getting to know the mountains, oceans, lakes, prairies and rivers of our country. We eat. There are our signature breakfasts hearty enough to carry us through the year. There has been local fare at picnics including Chesapeake crab cakes and crabs in Baltimore, salmon and haddock in Seattle, a pig roast in North Carolina, lobster clambake in Boston, Dutch oven feasts high in the Wasatch Mountains and Southwestern cuisine in Colorado. We have brought back food from the auction: a basket of Cajun goodies, South Dakota jerky, and local wine. Being in different areas has allowed conference goers to explore what characterizes different regions. Also, there have been many lobby discussions of just what can be put in feeding tubes, blended for meals on the go and made into finger food, certainly part of the SOFT culture.

E is for education. For SOFT this includes early intervention, inclusion programs and programs and therapies tailored to the needs of children and adults with cognitive, physical and medical challenges. Parents take on the tasks of educating doctors, therapists, teachers, working to change expectations, see possibilities and move forward.  In SOFT we have our own experts who draw on their education and experience to make us better teachers and advocates. Education means that children who were once relegated to institutions, denied a free and appropriate education before the 1970s or succumbed because interventions were not offered, live with families, attend school with their peers and more nearly realize their potential. These children in turn educate family members and others about what is important in life. There is now a scholarship for SOFT sibs attending college in memory of Erin Jorgenson.

M is for military, war, conflict. Young sibs have been known to wield balloons as swords, but only philosophical battles are waged. At conferences are heard stirring accounts of parents fighting for what their children need, just getting for SOFT children what is offered to other children. Parents fight for programming that includes their children, campaign to change state laws, strive to increase accessibility, crusade to be equal partners with physicians who are open and willing to listen, and battle to make DNR orders without consent illegal in every state. The mothers and fathers who rely on a van and ramp  take on people who park in handicap spaces for their own convenience. Our battlegrounds are hospitals, schools, legislatures, and parking lots.

SOFT, although not geographically confined, is a culture. It is a culture of caring, progress and hope with all the components required.