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The Role of Professionals in Helping Families

Raising a family or simply being part of a growing family always has its ups and downs. It is only natural that there are moments of pronounced stress or even that there is a certain level of constant pressure in the atmosphere, no matter how small. In the matter of making additions to a marriage or family, all members experience a feeling of anticipation and adjustments are naturally made. Therefore, finding out that the baby is disabled in one way or another, holds potential for adverse effects on the expectant family.

In fact, it has been noted by professionals that increased difficulty in adaptation has been observed in families with disabled children (Woolfson 2004). A family’s struggle with the needs of an impaired child begin even before the birthing of such child. The situation is fraught with stress as parents must cope with learning of their child’s disability and setting aside their upheld expectations of their future child. Not only this, but societal stigma in itself burdens the family of a potentially impaired child.

It is little wonder that families of disabled children find themselves battling daily the roadblocks of societal expectation and self-motivation – the days being counted even prior to the actual meeting of the child. The aim then is to aid these families in order that they may better integrate their established routines with the present novel needs of their family situation. Regardless therefore of whether or not families find peace in their situations, professional help is needed.

It would be too much to expect that parents and other members of the family find their way on their own, efficiently establishing a system of coping and adaptation. It should be borne in mind that in order to adequately answer the future needs of yet-to-be-born impaired children, their families must first be given attention. It has been shown that professional support for the families of disabled children has a decisive consequence both on the chances for a good upbringing of the child and for general parental well-being (Granat, Lagander, & Borjessen 2002).

These are the issues that professionals must consider in addressing circumstances of families of disabled children. As Sloper (1999) put it, the manner in which family members perceive and interpret the strains experienced in parenting a disabled child is an important factor for the entire family’s wellbeing. Parents and Their Prenatal Diagnosis Experience To be able to accurately address the problem, healthcare professionals need to view the issue from the starting point.

Recent technology has provided means for medical professionals to diagnose disabilities prior even to the birth of a child. Several medical techniques used are amniocentesis, ultrasound fluoresence in situ hybridization test, and maternal serum testing (Seligman & Darling 2007). The responsibility of medical and mental health professionals to provide aid to parents in understanding their role in their child’s disability begins at the moment of information and realization of the disability. The Parent and the Developing Child

However, the strain experienced during the revelation of the initial information is not the be all and end all of the pressures that parents encounter as a result of raising children with disabilities. To enumerate a few would be the consideration of economic requirements, time demands which medical interventions impose on the family, estranged or strained family relations, social isolaton as a result of the child’s limited mobility or behavioral problems, and the period of parental grief for the healthy child they had expected (McCubbin, Cauble, & Patterson 1982).

Most parents of disabled children feel that because of the added attention and care needed by the child, they need to sacrifice more of their personal ambitions and goals. Yet they repeatedly feel frustrated because once they fall into the trap of pity that society has constructed around disabled children, they cannot envision a bright future for the child for whom they have set aside much. As the child develops it has been observed that some parents feel that they have to compensate for the disability of their child.

Thus they make excuses for unreasonable actuations and demands made upon them. Furthermore, they become fearful of reprimanding the child as they feel that the child already has much to contend with. Therefore, behavioral problems displayed by the child are rationalized as effects of the disability. In this sense, it can be seen that parents of disabled children find themselves helpless and their knowledge insufficient to contend with the situation of their child.

Such a view of the circumstance inhibits them from fully performing the role of parent that they are tasked to enact. Appreciation of the situation in excess of that which is required or in excess of that which would be beneficial to the child may also have adverse effects on the manner in which parents relate to their other children. Overemphasis on the special needs of their disabled child may result in insufficient attention given to his or her siblings. Such practices lead to maladaptive family development.

Thus, tantrums and other behavioral disorders tolerated from a disabled child would begin to manifest in the other children as well as they see that their parents endure such behavior. What parents should be aware of is that tolerance of and inability to address the behavioral aspect of a child’s disability may lead to abnormal behavior in other children as well. The role of care-giver and disciplinarian is thus compromised. For other parents the experience is different and they learn to view the situation in parts and focusing only on aspects likely to bring stress.

They then find ways to cope with these dissected aspects bit by bit. This proves to be effective as parents do not take on the problem piecemeal, becoming overwhelmed with the enormity of the task. Therapy Methods The need for therapists to address the needs not only of disabled children themselves but of their families as well could not be made clearer. With professionals taking on the task of catering to the problems encountered by parents, they are affecting the entire process of development the child would be brought up in.

Not only that, but the interaction of the family as a whole would be improved and they would be better equipped to handle the unique situation of their impaired child. To answer such needs several methods have been observed as practiced in the field. The initial experience with health professionals and the manner in which the news is communicated to parents has been found to affect the resultant viewpoint of the parents as regards the implications of their child’s disability and their role in the same (Taanila 2002; Graungaard & Skov 2006).

It has been found that regardless of what the condition diagnosed is, the same shock, sadness and concern about the newborn’s health overcome the parents upon communication of the information. Yet it has been observed that a display of genuine sympathy from the professional, the statement of a certain and not an unknown diagnosis, and a short interval between suspicion of a disability and the actual pronouncement serve to increase satisfaction in parents (Gaungaard et al. 2006). Such satisfaction should be desired by professionals, particularly those concerned with helping disabled children.

The initial information determines to a large extent the framework in which parents would then act to service the needs of their child, the same extending to their perceived future for the child and their manner of interaction with him or her throughout the development process (Parette, Hourcade, & Brimberry 1990). Thus, the manner of communicating initial information directly affects the entire system in which the family as a unit interacts. Prior to their child’s birth parents are likely to have been exposed to professional dominance and consumerism.

Because they are ill prepared for the birth of a disabled child, they are likely to rely heavily on the advice of professionals. Inability of professionals to provide accurate information and guidance may result in parents’ awareness of consumerism to lead them to challenge professional authority. It has further been observed that upon discovery of impairments, professionals tend to withdraw from the family leading to lack of information on the side of the parents (Seligman & Darling 2007). The tendency of professionals to use medical jargon may also have the same effect as lack of information.

The inability to comprehend the nature of the diagnosis immobilizes parents from responding to their child’s situation. It must also be noted that timing is of the essence. When professionals determine the diagnosis during the prenatal period and they are able to communicate the same to the parents effectively, parents are able to gradually adapt to their situation. It is common to encounter feelings of denial from parents who receive initial information prior to birth (Seligman & Darling 2007).

As the child has yet to be born, the hope that the doctors are wrong is stubbornly held by parents, particularly by mothers. Regardless of such resoluteness however, the time that the period of pregnancy affords parents gives them more time to learn about the diagnosis. It also enables them to assess their means of coping with the situation. Thus, even prior to the birth of the child, parents are already adapting to the knowledge of the impairment. This allows for adequate emotional and physical preparation for the child’s needs which would inevitably arise upon its birth.

Furthermore, early diagnosis allows for parents to relay the news to family and friends giving these same individuals the opportunity to reform their expectations as well. Such change in perspective from the significant others of the parents tempers the negative stigma related with the birth of an impaired child (Seligman & Darling 2007). Finally, receipt of positive feedback from those significant others who are informed prior to the birth of the child enables parents themselves to feel less apprehensive of the impairment (Seligman & Darling 2007).

What is needed then of professionals is the adequate provision of information and background regarding the diagnosed disability. This information not only helps the parents cope but will enable them to properly communicate the situation to other persons. It is also important that professionals back up their diagnosis with several tests run on the intrautereine environment (Seligman & Darling 2007). Medical tests serve as proof to the parents of the diagnosis and aid them in moving on from a stage of denial to that of acceptance.

Finally, just as positive regard for the child is important from family and friends, such positive regard is more so needed from professionals. Family Therapy Models As has been discussed earlier, the struggles of a family go beyond the pregnancy period. Raising a disabled child requires constant care and support from professionals on the part of the family. In order to better cater to the needs of the family, several models have been put in place. Following are several models often utilized by professionals either in prenatal help or in the support during the developmental stages of the child.

The Lazarus and Folkman cognitive model of stress and coping takes on the view of people’s active involvement in the interpretation, response, and remedy to a potential situation of stress (Lazarus & Folkman 1984; Sloper 1999). This model focuses on the differences in individual appreciation of situations. Put simply, the model raises the possibility that parents need not necessarily view having a disabled child as a harmful situation. Of importance in this model are the resources available to the family as such factor into the assessment of given situations (Lazarus & Folkman 1984).

Availability of resources then plays a key role in the well-being of parents as the attempt to come to terms with their family situation. After an appraisal of the options open to them families use emotional-coping strategies which focus on regulating emotions or problem-focused strategies which focus on changing the situation itself. A related view to such model is that focusing on appraisal as the determinant of stress in the family (Beresford 1996). In this view, resources and strategies utilized to help families cope are not given as much weight as the actual appreciation of the family of their situation as stressful.

It is thus put forward in Beresford’s study (1996) that the stressful nature of any given experience is dependent largely on the extent to which the family deems it stressful. Another model is the key worker or link person model which brings in the involvement of a particular person whom parents may approach as needed for advice and help regarding their child’s needs (Sloper 1999). Such person is necessarily knowledgeable about the disability of the child and, more importantly, is able to act as go-between of the family and healthcare professionals.

The key worker is thus able to tap into the resources of established agencies in order to aid the family in their specific areas of concern. Such a model has potential for improved relations of parents with professionals. Woolfson (1999) identified Sameroff and Fiese’s (1990) concept of `redefinition as an important outcome of an interdisciplinary early intervention programme. This was where parents’ perception and interpretation of their children’s behaviour had changed, allowing them to view many of their disabled child’s difficulties as typical of the problems faced by any parents of a child at that developmental stage.

This empowered parents to implement caregiving strategies with which they were familiar, rather than feeling that parenting a disabled child always required them to learn new and special techniques. The psychosocial model of disability-related behavior problems takes on the effect that societal views and constructs regarding disabilities affect the manner in which parents view their situation (Woolfson 2004). It is postulated that the negative attachments that the community makes on individuals with disabilities becomes translated at the level of parent beliefs, and predicts that these are likely to be problematic for effective parenting.

It has thus been observed that with their negative viewpoint on disabilities, parents begin to see their child through the keyhole of such disability. This has been referred to as spread wherein observations made about personal characteristics are based on a solitary characteristic, in this case the disability (Seligman & Darling 1997; Woolfson 2004). Parents perceiving their children in such a manner are thus constrained to tolerated the problematic behaviors exhibited by their children.

These parents believe that change may be effected only with the intervention of professionals as the condition of their child is a medical problem after all. Such a perspective has been challenged. The psychosocial model of disability related behavior problems attempt to train effective parents in participating in meaningful levels in the development and therapy of their disabled child (Woolfson 2004). Parents are thus made aware of their role in transmitting societal rules and codes of acceptable conduct in order that the child is empowered to participate in significant areas of society.

It is thus taught that raising disabled children is no different from raising non-disabled children. Behavioral problems should be addressed and not tolerated by parents as they have a role and a responsibility to discipline their children in order for them to develop more balanced personalities and more acceptable patterns of behavior. Parents may manage to attain such level of awareness without the aid of professionals, but for those who do not, help in identification of areas wherein over-generalization of the effects of the impairment are made.

Counselling models are also employed to focus on the specific values and needs of families (Sloper 1999). Such models focus on mobilizing resources for the aid of families. With such interpersonal connection between families and professionals, the personal concerns of the family may be better addressed. Effective aid has been to manifest the features of relationship building, communication, honesty and clarity, understanding of family’s own concerns, and responsiveness to family values and goals (Sloper 1999).

The partnership model focuses on negotiation strategies between parents and professionals regarding the needs and actions to be focused on regarding their child’s circumstance (Dale 1996). Such an approach enables parents to actively participate in the decision making regarding therapies to be employed with their children. It should be remembered that utility of such a model involves the assignment of a named healthcare professional to devote time, openness and discussion with the family of the child.

Stress and coping theories have also been employed in addressing family understanding of their situation through the coping skills model of service support to the family (Sloper 1999). The theories are applied in a process of parent training in problem solving and decision making as well as other aspects necessary to enable them to interact well with their disabled child and their family. Other models of therapy and support that cater to the needs of parents and the families of children with disabilities are also available apart from those mentioned above.

What is important to note though, is that the situation of a disabled child cannot be treated as an isolated condition. Of great importance is the manner in which the child is raised and made to believe that despite his impairment, he is no different from non-disabled children and persons and is thus capable of the same ambitions and achievements as the same. Conclusion Society perceives disability as a misfortune thus, parents receiving a diagnosis that their child is disabled are likely to feel sorrowful.

But it is important that regardless of the negativity, families are able to take on a more positive stance. The ability of professionals to communicate a diagnosis during the prenatal stage strengthens the family base which the child will enter into. Furthermore, the presence of a professional who is sincere in the giving of help empowers the parents to cope with the knowledge of their child’s disability. It should thus be kept in mind that early intervention allows for smoother adaptation to the novel situation of having an impaired child.

Such intervention also enables the direct social network of the family to make commensurate adjustments. Therefore, parents and significant others must be made to understand even at an early stage that although the child is impaired, this by no means makes him a liability to the family. The family must understand the future role they are to play in the development of the child. They are not bystanders to the process of therapy that is to be rendered by professionals. Rather, they are active partners of professionals and primary disciplinarians and nurture-givers of the child.

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