Excerpted from Chapter 3 of The Parent to Parent Handbook: Connecting Families of Children with Special Needs, by Betsy Santelli, M.Ed., Florene Stewart Poyadue, M.A., & Jane Leora Young.

Copyright © 2001 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

When parents of young children with disabilities are asked who can best support them emotionally, their first choice is other parents who have had or are having the same or similar experience as they are having. Sharing experiences with others in similar circumstances is an important source of social support.

Opportunities for connecting with other parents occur naturally and spontaneously for families — over the backyard fence, in playgroups, and through community programs. But families of children with special needs tend to have fewer of these natural opportunities because their children with disabilities are not easily included in these settings. Finding a family with similar experiences can be more difficult than forging connections with other families in the neighborhood. Fortunately, there are parent-directed support opportunities that put parents in touch with other parents who are sharing their life experiences — either as a group or one to one.

Group Support

Hundreds of parent support groups have been started by parents wishing to talk with other parents about similar disability issues. Parent support groups usually have a single disability focus (e.g., Down syndrome, cerebral palsy), but other types of groups also can be found. For example, parents whose children attend the same early intervention program may form their own support group even though their children may have different disabilities. Or, parents who have children with challenging behaviors (whose disabilities may be different) get together to share support and strategies for managing these behaviors. For all of these groups, the parents develop the group and run the meetings themselves, offering opportunities for informational and emotional sharing.

There is a philosophical difference between support groups that are directed by professionals and support groups that are led by parents in determining the focus and direction of the meetings. Some parents may prefer that the group be led by a professional, who takes responsibility for the logistics and focus of the group. Parents may have some input, but these parents appreciate professional guidance. Other parents want to participate in a group that is led and directed by parents, with one or more parents determining the content of the group's meetings and facilitating each session. They feel that the group belongs to them if they determine the focus and activities of the group. Sometimes this sense of parent ownership and commitment to the group makes the difference between a support group that continues over time and one that does not. Regardless of whether a support group is parent directed or professionally directed, the more involved parents are, the more likely the group is to last.

Parent-directed groups can be harder to find than those directed by professionals; perhaps it is not easy for parents to get the word out about their support groups. Professionals have the resources of their agencies, and they network with other professionals as a part of their regular responsibilities. They are likely to be more aware of group opportunities for parents that are being offered by other professionals than those offered by parents. If you are looking for a support and information group that is being offered by parents for parents, begin asking other parents you meet about parent-led support groups.

One-to-One Support

The final aspect of parent support is one-to-one support. Parent to parent support is parent directed and delivered one to one. Since 1975, Parent to Parent programs have been providing a unique form of individualized support to families who have a member with a disability. Trained, supporting parents are matched with parents newly referred to the program. Because supporting parents know the challenges and special joys that come with parenting a son or daughter with a disability, they are able to offer informational and emotional support.

Parent to Parent matches are made quickly, ideally within 24 hours of the referral, and are based on similar disability and family issues. Often the referred parent has just been given his or her child's diagnosis or is just beginning a new era in the life of his or her child with a disability. Once parents are matched, each relationship develops based on the needs and preferences of the referred parent. For some parents, the match is short term and involves an exchange of information; for others, the match lasts for years or develops into a lifelong friendship. Because two parents who share common experiences are matched, parent to parent support is different from that provided by professionals. And because the relationship between the parents is one to one, the nature of the support is different from that found in parent support groups.