You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Reaching Out

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REACHING OUT

by Bernice Brooks Bergen

"Reach out and touch someone" is never more appropriate than when it's applied to those who have disabilities. When people meet to ventilate, to share their pain and sorrow, they also exchange wisdom and valuable information. There's a great strength in such bonding and a greater impact upon society.

Each decade seems to spawn a particular style of networking. The self-help or peer group format that emerged in the Eighties continues to gain in importance and effectiveness. My venture into the network of peer support began because I was born with a bilateral cleft of the lip and I wanted to help people with similar problems to get the right surgery and financial aid. In 1978, with a small nucleus of dedicated volunteers, I created an ad hoc support group called FACE (Friends for Aid, Correction and Education of Craniofacial Disorders) to fit our needs. Since then I've become deeply involved with the function of a community-based support group which has grown in numbers and has greatly expanded its free services.

The emphasis in these groups is on advocacy, responsibility, paraprofessionalism from the families, and a close relationship with professionals in the medical and counseling fields. Parents and professionals have, through the years, acquired an understanding of each other's roles. It's up to the former to provide the one-to-one emotional support to those who are dealing with a traumatic birth experience. Doctors must remain for the most part, emotionally detached. When I founded FACE, I contacted existing support groups nationwide who shared their programs with me. In turn, we now answer the deluge of requests for information about our own widely acclaimed organization. In 1979 there were very few parent groups. Today there are more than 200 scattered throughout the United States and Canada. Someday, hopefully, all key cities will provide such resources.

Not everyone has the ability to cope with an existing or ongoing problem. When the problem involves a child who is not "standard issue", coping is often impossible to achieve without some kind of help. Support groups of all kinds understand the importance of first-hand assurance and the sharing of the emotional and deeply personal problems with someone who's "been there". There's a unique kinship between fellow sufferers that no amount of professional expertise can replace.

Most parents of a child who is marked in some way run a gamut of emotions: denial, sadness, anger, and guilt, before accepting the reality of a craniofacial disorder. In most cases it's their first confrontation with such an abnormality. A cleft newborn is an awesome sight and the parents, often in total ignorance of this particular condition, are frightened. Support groups, if promptly summoned, can guide these troubled people to acceptance of their problem. They can help to cushion the shock of giving birth to a disfigured child, paving the way for repair and ongoing treatment. Experienced volunteers can help parents make educated versus emotional decisions regarding the care of the child.

In reality, even though many disorders seem hopeless at birth, the majority can be corrected with skillful initial surgery to achieve a normal appearance and function. A member of a support group who has a successfully repaired child is able to provide before and after pictures and can discuss the impact of such a birth on a paraprofessional level. Such volunteers have become professional in their approach because of long years of being actively involved in a similar situation. The special training they receive from the FACE Outreach Program qualifies them for an informal type of listening and counseling. They can identify with the doubts and fears, and they are aware of all the latest techniques and treatments as they appear in specific areas.

Volunteer support groups are usually parent-led and the services they offer vary from one to the next. FACE serves as a role model for newly formed memberships. Groups all over the country have adopted its policies, its unique public awareness programs and its staunch policy of advocacy.

Educational-based meetings where new and veteran parents can interact in a casual atmosphere have proven their effectiveness. Since all parents involved share the same fundamental experiences, the groups remain close-knit. And, with its greater numbers, has more of an impact on the public.

Ideally, support groups in any area should offer the following:

1) Monthly meeting dates to allow ventilation of feelings and sharing of personal experiences.

2) An educational program structured to promote public awareness of the nature of the disorder and accompanying prejudice.

3) The distribution of literature.

4) A newborn outreach program.

5) Formation of a resource library containing educational material and lists of service groups and agencies which can give assistance.

6) A careful record of case histories handled by the group and a follow-up of each.

7) Social Interaction.

Finally, I believe that advocacy should be the basic thrust of all support groups. The right of any human being is to receive uniform quality treatment, regardless of income, and the surgeon or treatment center of his choice. Members need to be aware of the obligations of insurance companies to provide adequate coverage for a child who is born with a disorder of any kind and to pay promptly. Only valid contingencies should be accepted. Members need to know their rights and that sometimes they need to fight for them. On those occasions it is good to know that they can call on other fellow members to stand by them. Decidedly, there is strength in numbers of people with the same goals.

The common complaints volunteers hear from troubled people is, "Where were you when I needed you?" or "Why didn't anyone tell me about you? I didn't know you existed." There needs to be a vigorous publicity campaign aimed at alerting the community to the existence of local organizations which offer guidance and emotional support in specific areas.


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