ANTICIPATORY GUIDANCE FOR PARENTS OF CHILDREN WITH DISABILITIES

 

Workshop Presented at the

INFANT MENTAL HEALTH ADVOCACY CONFERENCE: Birth to Three ... the Critical Years

Baylor University, Hankamer/Cashion Building, Waco, Texas

 Honoring T. Berry Brazelton, M.D., January 6, 1996

Anticipatory Guidance for Parents of Children with Disabilities: What Happens to Families When A Child Has Chronic Problems? by Ed Hammer, Ph.D.1

     In 1966, a study was conducted, by the author', of mothers and fathers of children with cerebral palsy. The methodology was to use the Vineland Social Maturity Scale as a structured interview to explore the feelings and reactions of parents when they were told that their child had cerebral palsy. Two findings came out of that study: mothers react at a time different than fathers and their reactive patterns happen more than once. 

     Brazelton observed' that with every pregnancy there is a "fantasy" child as well as the conceived child. The fantasy child comes from each of the parent's hopes and dreams and wishes. Each parent wonders what the child will be like (boy, girl, hair color, eye color, who it will look like, etc.). This fantasy builds throughout the pregnancy for both mothers and fathers. Research tells us that when the mothers of newborn children are first presented with the child, the mother will pull back the child's blanket to see if all the ringers and toes are there and if "this is the child that was ordered." This symbolic gesture signals the initial stages of bonding between the mother and infant It is at that time that the "child who is" begins to be reconciled with "the child who was to be."

    What happens when the "child who is" is not  "the child who was to be?" The study using the Vineland Social Maturity Scale gave some indicators about the family dynamics involved in having a child who has problems. When the child who has congenital problems is kept in the neonatal intensive care unit, or the professionals who have had an ongoing relationship with the family suddenly change in their demeanor and approach, or when there is concern expressed by professionals but no final prognosis is presented, the pre-existing fantasies about the child and the lack of reconciliation begins to create anxiety.

    Initial bonding leads to attachment between the mother and child. When attachment does not follow the initial bonding, the mother and child are at risk for reconciliation and emotional stability. The 1966 study showed that mothers tended to react to having a child who had problems when they began to provide nurturing activities with the child (feeding, bathing, dressing, etc.). On the other hand, the fathers reported that their reaction to having a child with problems began when the child did not achieve something motoric (rolling over, looking at faces, lifting the head, etc.). Fathers tended to be on hold, not internalizing responses in the initial time frame and supporting the mother through the crisis. Thus, parents are at risk for dysynchrony within the couple. The mother is reacting and the father is supporting but not expressing. Each parent experiences confusion but often does not realize that the other spouse has a different perspective over the confusion.

     As a result of the dysynchrony within the couple, parents of children with disabilities are at risk for decreased communication, lack of understanding of the other parent, and a gradual pulling away from each other as stress increases over their child's condition, their reactions, and their understanding of the future. This pattern was observed in terms of the grief cycle of bereavement. The author had been a student in the university where study of returning World War II veterans was conducted. In that center, under the leadership of Beatrice Wright, Tamara Dembo, and Roger Barker, the "phantom limb" syndrome had been described. This detailed the process that wounded veterans went through to reconcile the loss of a limb in combat. The cycle of grief, the reactions of mothers, and the reactions of fathers led to an understanding of the impact on a family that a child with chronic problems evoked. At the same time, the cycle of grief was being defined and introduced into the literature by Elizabeth Kubler-Ross. All of these factors came together to explain what was happening to families in the late 1960s when there was a family member with chronic problems:

1. Reconciliation of the "child who was to be" with the "child who is" is a normal product of pregnancy. When that does not happen, there is dysynchrony within the couple that is a normal reaction pattern to not knowing about their child and their child's condition. Mothers reacted differently in time than fathers.

 2. A process of reaction, similar to the grief cycle, was observed in parents as they worked through this reconciliation. This pattern happens more than once for each parent.

     Further study of the reaction pattern was undertaken in the early 1970s at the Callier Center for Communication Disorders. In a joint study 3 With Carolyn Torrie, ACSW, parents of children who were deaf-blind (birth to 21 years) completed a structured interview. These parents were asked to describe when they experienced the reaction pattern to having a child with chronic problems. A pattern began to emerge of specific times when the family was at increased risk for crisis over their child's condition. Parents reported that over time they could identify the reaction pattern but that they did not have specific strategies to address the pattern. It gets easier, but it does not go away.

     It is important to note the historical nature of these data. This study was done before P.L. 94-142 or any type of comprehensive legislation existed that provided services to children who were disabled. Six times were identified by parents as evoking adjustment to their child's disability. These crisis-producing conditions triggered the adjustment to having "the child who is" rather than "the child who was to be." The six identified times appear in Figure 1. At each of these times, the mothers tended to react first and then the fathers reacted. The reaction is the same as grief or bereavement.  These stages have been defined by several sources and a combination of descriptors was used to define the patterns of adjustment found in parents of children with disabilities. 

 

The stages of the grief cycle are:

Shock and disbelief - This is a time of whirring and blurring when the parent is aware that something has happened, but does not process exactly what has happened, the permanence of what has happened, or the magnitude of what has happened. Some people describe this as being "on automatic pilot" going through the motions, but not really invested in what was happening.

Denial - The reaction noted by parents at this substage is that there has been some mistake and eventually it will all be cleared up. Denial is often processed as "I think you have the wrong person in mind"... or ..."surely you have made a serious mistake." In denial, parents often seek second opinions, or third opinions, or some magical treatment. There may be a flight to rind the "right" professional who will understand (and fix it). This can be a time for shopping for services, to try to rind everything about the condition (if it exists) and the treatment Oust in case the parent needs to prove the professional is wrong).

Rage - The substage of denial melts into rage. Not anger. Not peeved. But all out, consuming, total RAGE. The parent is angry with their mother-in-law, their spouse, the neighbor next door, even the baby and sometimes God for having this happen. Often there is self-anger in the form of depression. The rage is all pervasive. It smacks everything and everyone it touches.

Bargaining  - As the rage subsides (or at least becomes. ongoing, smoldering anger) there is a process of bargaining that begins. "If it is only the eyes, I can accept it, but not the cars too..." "If it is mosaic Downs and not Trisomy 21..." "If it is just the heart and not   Bargaining is a way to address the part of the problem that can be accepted without taking on (and accepting) the whole problem. Bargaining allows us, as humans, to identify that part of the problem that we will address even if we cannot take on the whole issue.

Resolution - Bargaining leads to a beginning of stability, of feeling some control over the situation. Resolution means that the individual begins to feel that they can "make it through the night." It does not mean that the problem is solved to the level that is wished, but it does mean that the individual begins to think that they can live with it.

     Parents identified these feelings in a variety of way. The important part is to realize there is a pattern, a process that a person goes through to recognize problems and to learn to live with the solutions that are available. This cycle seems to repeat itself over the lifespan of the family. Sometimes, a person gets stuck in one of the substages (rage, bargaining, etc.). When this happens, individuals become trapped in a substage and it builds rather than resolves. You have met parents who are locked into denial or bargaining or smoldering anger.

     In an effort to understand those parents who seem to be bolted to a substage of grief, several parents were interviewed. One of those parents was also a professional, Dr. Natalie Barraga. She shared a presentation 4 that she had made regarding parental needs versus affiliate services. In this speech to the United Cerebral Palsy Center in Fort Worth, Dr. Barraga talked about parental needs and how, if these needs were not met, parents became lost. This image fit the parents who are fastened into a substage of grieving. Dr. Barraga's list is very helpful, but the words do not explain the full meaning of the statements. Here is the list and a quick explanation of what those words really mean:

Parents need:

Emotional Support and Understanding - What this means is that parents need to know that their feelings arc normal, human reactions and not craziness, being out of control, being responsible for something that they did not wish, or any of a variety of feelings that hit parents of a child with disability. Parents do not need to be told "now, now, there, there, everything will be all right." Everything will not be all right. They did not ask to be in this business. They had not planned to have all the problems that they arc encountering. Parents need to know that they can feel any feeling and that there are people who will be there for them as they work through their feelings.

Information and facts - Parents have a right to know that the professional does not know! Parents enter the field of disability services in mid-stream. They have every right to assume that the system is in place and that professionals know exactly what to do and how to fix it. I honestly believe that every parent needs to have a notebook or folder to keep information in. This does not mean that they have to read everything that is in the folder or notebook. It means that they need to know everything that anyone else knows. It also means that the parents need to feel that they are part of a team, working together. Too often, professionals give the impression that they alone can have information and will parcel it out to parents as the professional sees fit to do. This locks parents into substages.

Active Participation in Planning - Remember, this was done years before there were IEP meetings. Parents want to be part of the process, not passive recipients of the process. I am often ashamed at the IEP meetings I attend. Typically, there are many, many professionals (sometimes on one side of the table) and the parent or parents. I call these types of meetings "big Poker games" where each person has their cards dealt and each card is played in a ritual fashion. That is not the intent of the law, but these meetings sometimes take on an "us" and "them" format. Parents need to be part of the team. They have valuable information about the child. They are the only ones who will be with the child throughout the course of habilitation and education. The parents contact every professional, professionals do not contact each other. I believe that we need to empower parents to become case managers with pay for their work. I think we have to help the parent become empowered, but that is a process that they can achieve through parent-to-parent training, supportive counseling, or experience.

Self-needs - Parents need to realize that they have a life separated from their child' condition. I worry when I hear a family start to be called the "deaf family," or the "blind family." For years, I was known as the "mentally retarded teacher" which described my job, not me. Parents need to remember that they married for a reason - for love, for sharing, for intimacy, for sex, for lifetime bonding. When a couple encounters a disability, these reasons for marriage become blurred. Parents need to remember that they have a sex life and that every parent, EVERY PARENT, wants time away from their children. It is alright to have a weekend just for the couple, even when your mother says, "How dare you leave that poor child with a babysitter." If self-needs are not met, the couple starts to pull apart and the marriage falls apart

Thorough and dynamic understanding of their role - Very quickly it needs to be pointed out that this does not mean that parents must become SUPER-mom or SUPER-dad. What this means is that it is all right for parents to have limits. It is all right not to have 84 hours a day to spend trying to do everything for the child with disabilities. When the speech therapist says do 10" ba-bas" a night and the OT says do 12 "this-n-thats," and the PT says do 45" what its." It is all right for the parent to say, "I hear what you are asking but I do not have the energy to do that right now." It is all right to have boundaries.

Present and future expectations - Parents want to know what the future holds for them and for their child. Too many professionals address a slice in time (birth to three, early childhood, transition, 18 to 21, etc.). This sausage of services is not always linked. Often the parent must be a pioneer every September when school starts. It means getting the new teacher up to where the old teacher was. It means "helping" the school personnel understand the child. It means starting all over, time after time after time. Where does it lead? Why doesn't early intervention flow without interruption into public school? Why doesn't elementary school tie into middle school? Why is high school often a rush toward getting out of school with no skills, no plans, no future? What happens in the adult years?  Who is the "lead" agency for adults? Parents need the big picture, not of just what is available but what could be available.  If these parental needs are not met, or at least acknowledged, then the parent is at risk for getting stuck in one of the substages of grief as they repeat that cycle over the years.

     There are two more studies that help understand what parents face in trying to parent a child with a disability. One study' was conducted at the ARC of Dallas with fathers of children with mental retardation. This study was a structured group interview of 8 fathers at a time. The questions were open ended but responses were to be coded into categories. At least that was the design. Once the meeting started, any hope of structure went out the window. The interviewer was overwhelmed with the response levels of the participants. Fathers were standing up, pounding on the table, raising their voices. One father pointed out that the delivery system is set up for mothers and very dependent children. If a father shows up, the professionals think he is angry at the agency or service provider. To this, another father pointed out that none of the professionals ever asked the father about the child. If the father called to talk to the professional, there was always a delay. If the mother called to talk to the same professional, there was a more prompt response.

     In talking about the relationship of professional to father, one father said, "Tell me what you are looking for when you work with my child. Maybe I have seen it and can tell you." The father wanted to be involved, to be treated as an equal in the provision of services, and to contribute his observations to the development of intervention programs. Another father said "...tell me what you know when you talk to me and I will hear what I can hear.. the next time tell me what you know and I will hear what I can hear .. the next time, tell me what you know and I will hear what I can hear.." This observation was interpreted to mean that parents want information and facts, but do not always have the energy to process what is said. If a-parent is deeply involved in reacting to the diagnosis, the treatment or the prognosis, their energy to absorb information may be low. Share with them repeatedly. After you have told the parent the information, ask the parent to tell you what they heard you say. This often leads to a better relationship and certainly leads to better communication between professional and parent 

     So, what do these studies tell us? First of all, adjustment to having a child with a chronic problem is a life-long pattern. When this paper was presented in Michigan to a statewide meeting of parents of children with multiple problems, one mother came up after the talk and said that another stage had to be added. She said that her husband had recently retired and that they had a 26-year-old daughter who had many chronic problems. She said that she and her husband realized that retirement brought up the old feelings that they had about their daughter's condition. Her comments have been added to the chart to help parents see that reaction is a long-term process.

 

 

     The single most important message to give to a parent of a child with a chronic problem is that the parent's feelings and reactions are normal, human feelings. Many parents are concerned that the intensity of their feelings over having a child with a disability is that the parent may loose control over their emotions. It is all fight for parents to react. It is normal for them to have lingering feelings. If this is recognized, the parent can go about the important business of helping their child, if not, the parent runs the risk of staying in their reactive pattern forever. Parents need to know that they may have any feeling and not feel that the feeling must be hidden. Coping is learned. One of the phenomena observed in conducting these studies is that parents assume that the system is in place, that everything is known, and that professionals have spent years working with children just like their child. This assumption leads to parent having anger when the professional does not "fix" the problem immediately. This assumption leads to shopping for professionals who do what the parent expects to be done (i.e. cure the incurable). Assurance to the parent that they will make it through the night is helpful in modeling coping skills. Learning to talk to the parent about what is known and what is not known also leads to a more trusting relationship. Making a commitment to be with the parents helps them to see that the interventions and treatments are dynamic, not static, activities. When one mother of a child who is blind asked, "How long with you work with me and my son?" She had tears when the professional responded, "About 20 years." The mother had felt that no one was with her in trying to understand blindness in her child. She was sure that she was alone and when she was told that the professional had a commitment to work with her child, she felt that for the first time there was a positive future. The child was still blind, the mother was still grieving, but the future seemed to be possible.

     One final study contributes to understanding parents and their concerns. This study6 was conducted in 1987 in Dallas with Patricia McCallum, the mother of a child with congenital rubella syndrome. Parents were asked to list all their concerns about their child and the future of the child. From this list, groupings were made of the responses into similar categories. This list was again presented to the parents and they were asked to rank them in order of importance. Five distinct concerns came from the second ranking by parents. The Five most important issues parents face regarding their child's future are:

1.      How will this person get money?

2.      How will leisure and recreation be provided?

3.      How will medical and dental services be provided?

4.      Who will monitor or supervise the person who is disabled?

5.      Where will the person who is disabled live?

     These concerns form an excellent set of goals for services across the lifespan. It is difficult when you cannot "fix" the problem. It is positive when you can identify the outcomes that you are after. It makes it possible to begin to identify which services are most important and the sequence into which they fall. It helps identify goals and the degree of attainment that will be acceptable to parents and to professionals. Theoretical strategies may be used to implement these goals, the variety of techniques enriches the opportunities to help.

     With these goals in mind, there are some observations that apply to helping families of persons with chronic problems. First of all, there is a need for "cultural grandparents" to the family of the child who is disabled. When a child is born into a family and that child has chronic problems, there is no history, no heritage, no support system, or extended family to call upon. Parents who have been there before need to be recruited to help new parents. No one needs to re-invent the wheel. Call upon other, successful, parents to transmit the culture.

     Secondly, pacing to the parent is the role of the professional. If the professional is in a hurry or cannot make a commitment to the parents, then that professional needs to stop and observe the process. Parents cannot be hurried when they are in crisis, when they are reacting to issues that they do not understand. Pacing to the parent is the most successful contribution the professional can make at that time to the progress of the child.

     Finally, look for the long haul. Short-term services yield short-term results. This may require the professional to admit to the parent that the professional is working through the complexity of the problem, instead of being omniscient and knowing exactly what to do. Helping the parent see the long view of the problem takes pressure off everyone to do something quickly just to be responsive. It is all right to take your time. While the professional is learning how to pace to the parent's style of problem solving, the professional can become an advocate for the delivery system to be integrative. Help the parent to see how to use services and to avoid duplication of services. The professional will make a major contribution by advocating that individuals not be cut up by disability groups, by age groupings, or by agency providers. Helping the parents learn to be on the team, to identify needs, and to participate as active and equal partners is the most important beginning of role development. In the long range, the parent will be the case manager. They did not ask for the job. They arc not trained for the job. They may not even feel secure in doing the job. But with support from professionals, parents can learn to be active participants and begin to assume their role in the habilitation of the family member who has chronic problems.

Bibliography:

1. Hammer, E. (1966). Reactions of Parents to the Diagnosis of Their Child's Cerebral Palsy Austin: Austin Cerebral Palsy Center.

2. Brazelton, T.B. (1972). Unpublished paper presented at the national Association of Early Childhood Educators, Seattle, WA.

3. Hammer, E. and Torrie, C. (1972). Survey of Parental Adjustment. Dallas: Callier Center for Communication Disorders.

4. Barrage, N.C. (1966). "Parental Needs vs. Affiliate Services" paper presented at the United Cerebral Palsy Center, Fort Worth.

5. Hammer, E. (1980). Involving Fathers in Health Care Delivery paper presented at the national conference of Association for Care of Children in Hospitals, Dallas.

6. Hammer, E. and McCallum, P. (1987). Unpublished survey of parental concerns. Dallas: Foundation for the Developmentally Disabled.

 

 

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