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Parents helping parents.

Parents Helping Parents

Parents have told us that they would have welcomed an opportunity, especially in the beginning, to meet another parent who had an older child with a similar disability. As one mother said: "If only I would have had somebody to talk to, someone who knew the emotional impact, the pain, and the hurt from personal experience, the adjustment would have been much smoother."

Having someone who is able to listen and understand is extremely important for new parents. Often, the mere presence of someone who has been through such a crisis is living proof that one can survive such a stressful situation.

Many parents vividly recall the trauma they experienced when they were told of their child's disability. They often want to help new parents. As resource parents, they can share their experiences and give invaluable suggestions about many aspects of the child's care and future development.

The experienced parent, who has lived through this stressful time, can be more sensitive to the feelings involved, offer more appropriate support and can help the new parents in ways that are not possible for professionals. At the same time, they have to know that they are not professionals nor will they be able to provide all the answers. Actually, many people in stress may not want others to provide answers, but welcome someone who will care enough about them and their problems. The resource parents' role is to help the new parents to talk about their feelings. They also need to know when and how to help parents ask professionals for information and assistance.


Initially, most parents are struggling with disbelief and desperation. They are likely to be confused and in despair. Some parents may be quite composed and receptive, whereas others may be withdrawn or angry.

It is important for the resource parent to know that the negative feelings are not directed towards them personally, but rather this is just the new parents' way of handling the situation.

Some mothers and fathers may feel guilty about their child's problem. They may believe that in some way they have caused it. At times, new parents may even wish their child would die and/or they may feel negatively towards the baby and are very troubled by such thoughts. To hear that other parents have had similar feelings when they were confronted with a similar situation will help the new parents appreciate that they, themselves, are not "bad" people. Instead, they can realize they are experiencing a natural human response that is often part of facing the fact that they have a child with a disability.

Some new parents may just want to talk a little, whereas others may be looking for complete information. Sometimes, new parents are just not ready to talk to anyone right after they have been told of their child's disability. Initially, such new parents may avoid people who remind them that their child has a serious problem. In such a situation, it is advisable that the resource parents give their name and telephone numbers so that the new parents may contact them when they are emotionally ready to do so. It is not constructive for resource parents to pressure the new parents to discuss or to assume responsibilities they are not ready to carry out. Hence, it is paramount that the resource parents gauge their discussion to whatever the new parents want at this time. The resource parent can help new parents find answers to some of their questions as a way of assisting the new parents in making their own plans.


Many new parents have misperceptions about words like "retarded". They may think that children who are mentally retarded just lie there and do not develop or respond. Yet, hearing about the resource parents' child as a person and seeing pictures of the child engaged in ordinary activities can be reassuring and will give the new parents some concept of what such a child may be like. It will also help to illustrate that children with special needs are much more like their "normal" peers than they are different.

Because of occasional inappropriate professional advice or because of previous negative experiences, some parents may indicate a preference for placing their child away from home. Rather than expressing disapproval, resource parents can inquire about why the new parents want to place their child. Such a decision may be based on misconceptions of what the child's care would be like or concerns that the child's presence may have a detrimental effect on the family, in particular on brothers and sisters. The resource parent can explain that it is important for the development of any child to be brought up by loving, caring parents and that a child's life can be enhanced by an individualized personal environment.


Resource parents need to understand that other parents may react quite differently from the way they did. New parents may have a different outlook on life, a different philosophy and different religious beliefs. It is important that the resource parents not challenge the new parents when their feelings or ideas do not conform with their own. Certainly, it is inappropriate for resource parents to try to "convert" new parents to their own point of view. Although the underlying issues may be the same, the new parents' way of handling them may be very different or may be expressed in ways that the resource parents disapprove. The resource parents need to be clear that even though they may not approve, they respect differences of opinion.

The resource parents are well aware that there are no smiles in the beginning. However, they can convey that, as time passes, the new parents may experience genuine happiness with their child.



Start Small: Begin on a modest scale. This will enable you to pace yourself as you learn. You will gain momentum as you gain experience.

Sponsorship: Most parent-to-parent programs are sponsored by an established organization, such as the local Association for Retarded Citizens. There are certain advantages to this strategy. Both parents and professionals may find help more acceptable, coming from a reputable local organization. If there isn't a program in your area, you can approach a group of people with which you are involved to see whether they are interested in forming a group that will affiliate with a larger organization.

How to Help: Professional counselors have developed certain interviewing techniques which have been found to be useful in a variety of situations. Some of these are very useful tools for the resource parent to have. For example, in active listening, the helper responds in ways which enable the other person to explore his/her own feelings and arrive at his/her own solutions. Anyone who has been in a confused state can recognize the value of a friend who helps the confused person to arrive at his/her own conclusions. Allowing a new parents to find their own answers is essential because it is inappropriate for the resource parent to offer solutions that are tailor made for the resource parent, but are not relevant to the person in need.

Before meeting with new parents, potential resource parents can learn about the processes of grieving, coping and adjustment that most families of children with disabilities experience. Although it is true that resource parents have firsthand experience, it is also true that everyone reacts differently. It is extremely important to develop a healthy respect for every person's individual style of problem solving.

Professional Backup: Anytime you are dealing with intense emotions such as those surrounding the birth of a child with a disability, you are likely to run into situations which you may not be able to handle. For example, someone may tell you that he/she is having suicidal thoughts, or may be incoherent or severely depressed. Therefore, it is important to have a qualified mental health professional available with whom you can consult or to whom you can refer such an individual. Accordingly, resource parents would do well to obtain some instruction from a social worker, psychologist or other professional counselor who is prepared to provide assistance.

Develop Resources: New parents don't need only a "listening ear" -- they often need concrete suggestions about such things as where to go for help. Resource parents can develop a list of resources for new parents. In addition, as time goes on, resource parents can develop key personal contacts who will be able to provide new parents with more detailed information such as where to find financial and legal assistance, advocacy services, mental health services, early intervention and educational services.

PHOTO : Resource parents share their experiences and offer suggestions to new parents.

PHOTO : Dr. Pueschel attends to one of his patients.
COPYRIGHT 1989 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1989 Gale, Cengage Learning. All rights reserved.

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Author:Pueschel, Siegfried M.; Bernier, James C.; Gossler, Sarah J.
Publication:The Exceptional Parent
Date:Jul 1, 1989
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