‘ it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other’ (Dickman & Gordon cited Haven, 1985, p. 109). Parents today encounter a whole new world of challenges while becoming a parent. Parents encompass the responsibility of bringing up their child in a safe environment that adapts the physical, emotional and social growth of their children in today’s society.
Families today and in the past may experience some form of stress or crisis within their lives which may have been in response to health, money problems, abuse, neglect, and several other situations which may have caused the family unit to fall apart or separate. Therefore it is not unforeseen that if a child with a disability is born into a family this may also drive families apart or into a state of continual crisis.
This may not always be the case however as different families will experience numerous diverse responses to the acknowledgement of their child being born with or developing a disability. Studies have also shown that if a child with a disability is born into that family this may bring families closer together than ever before. Leyser, and Miller, cited in Batshaw (1994) state that individuals and families differ greatly in their response to having a child with a disability as it may depend on past life experience, religious and cultural backgrounds and the age of the child at diagnosis.
This essay will explore the different responses families may experience during what Seligman (2007) calls the critical periods, which take into account of when the parents first learn or suspect that their child has a disability, school entry age, time of leaving school, and when parents become older. This essay will also aim to address the critical factors which must also be taken into account such as, the severity of the disability or disability type, the relationships within the family, such as marital status, family structure, socio – economic well being of the family, education of the family and the personality of the individual parent.
In addition this essay will endeavour to address some of the psychological theories which have attempted to explain the reactions of families who have given birth to a child with a disability. ‘ When Aidan was newly born, “Down Syndrome” was all I saw when I looked at him. But now I see that the Syndrome is just a small part of who he is and what he will become’ (Dwight cited in Milgram 2001, p. 153). Giving birth to a child, can be a nerve-racking and emotional time for any parent.
Every parent will have high hopes and expectations that their child is born, a perfect and healthy baby into this world. It is difficult as a result to imagine the magnitude of mixed feelings that the family must go through after giving birth to a child with a disability, feelings such as grief, sorrow, loss, depression, disappointment, concern, lack of knowledge of the disability, lack of control, attitudes, egos and perhaps embarrassment. The mother may see the birth as a diminishing of self esteem and may ask why she was unable to create a perfect child.
The family may also be in denial or reject the baby at first. As the child with the disability spends the first few weeks of his or her life in neonatal intensive care units this may hold back on parent – child bonding. Alternatively the mother and family may nurture the baby immediately and not feel anything but love for their new born child. Studies have shown that the most critical and complex time is when the parents first receive the information or suspicion that their child has a disability.
According to Seligman, (2007) a survey partook by Quine and Rutter, reported that 58% of parents that were surveyed were dissatisfied with their physicians and the communication of diagnostic information given at the time, as many of the physicians believed that parents did not want to receive the information shortly after giving birth. However studies have shown that that most parents do want diagnostic information as soon as possible. Parent’s dreams and ideas for the future may be shattered immediately and their whole world turned upside down.
Therefore it is essential that the child be given a name as soon as possible and his or name be used when relating to the baby. Furthermore it is vitally important that when the parents are given the news of their child’s disability, that the parents are brought to a private comfortable setting. Both parents should be present at the time, or a significant other important person to the mother and child. A good quality team of doctors and nurses should be present, and it is crucial that they use a language that is clear, simple and straightforward, that the parents will understand.
The information of the disability should be given in writing also. Parents may be in shock and not take in the information fully which is being given to them at that time. Counselling services should be made available to the parents, as it may take a long time to digest the information. The financial burden of medical bills may also take its toll on the parents and they may panic. It is essential the parents are treated sensitively, compassionately and respect shown for the family and child. Parents may feel vulnerable and sense that they are on their own.
In this respect practical advice should be given to the parents. The local health nurse should be made known to the family and a contact number for the local clinic should be given and made known to the family. The reaction of the parents may vary according to the severity of the disability and this may also be the case with extended family and friends. The future will appear bleak depending on the disability and the personality of the parent or parents. Expectations of grandchildren may be shattered. Future hopes of their child’s survival may also protract on the parents minds.
Support groups must also be made recognized to the parents, as they need to know that they are not alone and some comfort and assurance given to them. Research has shown that other parents with counselling skills were found to be most helpful, especially if they have a child with a disability themselves. Several families from lower socio – economic groups may perhaps have lower expectations from life and these families may possibly find it easier to except the diagnosis. Alternatively families from higher socio – economic groups possibly will have higher expectations from life and therefore may seek out a cure.
Studies have shown that these families admittedly go to very high extremes to find a cure for their child. Perhaps in not finding a cure for their child, the family will begin to accept the diagnosis. Because individuals and families differ immensely the acceptance of the diagnosis will encompass a different impact on each individual. Research has shown that an optimistic person will be able to cope better with the disability and will envision further positive outcomes. This helps the individual move towards, coming to terms with the disability.
The more positive parent will find it easier to cope with the disability. ‘ Over time the families coping strategies generally improve’ (Batshaw , 1997, p. 753). The parents may have only had limited experience of people with a disability, prior to their child being born with a disability. They may perhaps have only been exposed to the stereotypes and attitudes towards disability that is stigmatized by their culture. It is essential that the parents gather all the information that there is out there about the disability.
In addition to the information provided early intervention is required and extremely important. Physical and occupational therapists, speech therapists, special stimulation programs and other medical professionals are available to provide therapeutic intervention that will minimize the effects of the child’s disability. This will help to relieve a quantity of the stress. This may be difficult for some families due to finance, children at home, daily routines, geographical limitations, work related, household responsibilities or perhaps a grandparent is at home that needs taking care of also.
The problems or stresses that will arrive once the family have returned home from hospital may be physical strain, financial strain and other siblings if any, may feel neglected. For some families the burden will be unceasing. There may be a huge financial strain on the family as home care may be needed, therapy appointments seen to and one parent most likely will have to stay at home. Parents can find that they are missing the social aspect of their life, for this reason social clubs are vital to increase social contacts. The following stage for the family will be coming to terms with and accepting the disability.
Some of the characteristics Seligman notes as being central to parental acceptance are: 1. They are able to discuss their child’s disabilities with relative ease. 2. They evidence a balance between encouraging independence and showing love. 3. They are able to collaborate with professional to make realistic short – and long term plans. 4. They pursue personal interests unrelated to their child.. 5. They can discipline appropriately without undue guilt. 6. They can abandon overprotective or unduly harsh behavioural patterns toward their child. ‘ Acceptance is not surrender to the idea that the disability is unchangeable. Rather, parents accept the need to learn skilful ways to alter negative effects of the condition’ (Seligman, 2007, p45). The education of the parents is also a critical factor. Research shows that parents who are better educated find it easier to cope. The next milestone for the parents is learning to cope or adjust. The role of the family will be changed perpetually depending on the severity of the disability. The diversity of care the child needs is significant for the parents and the amount of time the child needs to be cared for is very demanding, especially for first time parents.
New techniques may need to be learnt by the parent’s for instance feeding or changing clothes etc. For the mother it will generally be very hard emotionally and the mother must be given a lot of much needed support and understanding. Fathers differ however they may become engrossed in work and can distance themselves from the emotional demands that the mother faces. Research has shown that they find it hard to cope with the reality. However this is depending entirely on the individual. Research has shown that single parents do just as well with their child with a disability, although they do need help from society.
With single mothers there is an immediate interaction with mother, child and grandmother. Grandparents are also affected, as naturally grandchildren are a source of joy, comfort and happiness. Grandparents will grieve for their own loss and for their child’s loss. However grandparents can be extremely helpful financially and offer a strong source of emotional support (Batshaw, 1997, p. 749). The characteristics of the child are imperative and the level of response the adult gets from the child is important as the more response the parents get from the child the more optimistic the parent will feel.
The smallest amount of response from the child is incredibly important to the parent. Other sibling if any must be told in great detail of their brother or sister’s disability and the disability explained, using language that the sibling or siblings can understand and depending on how the other children can communicate. If the siblings are older their role in the family may have to change drastically, and their help will be obligatory more so. Sibling relationships differ greatly to child parent relationships. Siblings spend much more time together and if close at age will have a greater bond together.
Coleby (1997 cited in Trachtenberg and Batshaw p. 747), found that older male siblings had an increased appreciation for children with disabilities, while older female siblings showed increased behaviour problems. The same study showed that near age siblings had less contact with peers and younger siblings showed increased anxiety. But this varied depending on how their own needs were met and how the parents were handling the diagnosis emotionally, what the children were being told and how much they understood.
Researchers also found that siblings of disabled children spent twice as much time care giving but were happier in their relationship with their sibling, in comparison with matched siblings of ‘normal’ children. It has also been found that various siblings take on additional caring responsibilities in order to gain recognition and praise from their parents. It has also been acknowledged that siblings with a disabled brother or sister become very protective of them and towards society’s stigmatized attitudes to people with a disability.
Siblings of a child with a disability possibly will experience positive and negative effects. They might feel guilt or feel responsible for the disability or illness and become defensive and they may well experience isolation from peers. They are likely to mature quicker and experience a shorter childhood, become socially withdrawn, experience physical symptoms such as sleep problems, headaches and somatic problems. Studies have shown that they have a higher possibility of anti social behaviour.
Counselling services are available and sibling workshops through Barnardos and Enable Ireland. On the other hand siblings have a powerful impact on the lives of their brothers and sisters physical and emotional contact throughout their lives. They may teach others about the condition that their sibling has. Their coping skills may become enhanced and they may recognize how to become more thoughtful and patient. They can become more supportive to the sibling with the disability and other family members, become more appreciative of health and develop more independently.
The sibling may also develop a caring career later on in life. The future is long and harrowing for the parents and the next step for their child is education. parents will worry and wander about their child going to school. In the case of severe disability, institutional or foster care settings are rare today because of increased availability of support services. In terms of research teachers were found to be extremely helpful in terms of comfort for the parents, there are visiting teachers and home tutors available for deaf, blind and traveler children.
Nowadays there is an integration policy in our schools. Special needs assistant’s are required for some children but given the current financial climate, with it sees cuts in all areas including special needs which could leave a negative effect on the child and the family. The child may or may not recognize that he or she is different from other children prior to school age. The child starting school could prove very difficult for the parents particularly if the child has behavioral problems, the child must be disciplined even in play school.
Discussing and modeling, how to handle different situations at home improves the child’s ability to cope with social situations and in the community as well. Batshaw (1997). It has been found that school aged children with disabilities are often excluded not just by their peers but also by their teachers. Although their behavior has been found unintentional, educators were unaware of the impact of their comments. Disciplining the child is a huge area that parents must concentrate on, as it may affect the rest of the class.
Teachers and school personnel should be adequately informed of the child’s disability. Classmates may tease and bully the child. If the child is not accepted by others, he or she may develop a poor self image and exhibit depression or behavior problems. The teachers can assist in preventing this from happening, by preparing the class for the new student entering the classroom and help explain the child’s disorder to the child’s classmates. The child with disability will gain confidence throughout contribution in activities in which he or she can be successful.
Some children with disabilities will need encouragement and support socializing and developing friendships. David and Schnorr, cited in Batshaw (1997), summer camps (be they integrated or Segregated) welcome children with special needs that will provide an avenue for children to develop important socialization skills and experience independence from parents. This not only encourages personal growth for the child but for his or her parents and campmates as well. In camps with inclusion programs, the typically developing children learn to appreciate people with differences.
This will prepare them for a future where they will live, work and befriend people with disabilities. For all families the child reaching adolescence can be a complicated time for all children whether they have a disability or not. Studies have shown that for children with disabilities the problems are magnified. As with ‘normal’ adolescent children, adolescent children with disabilities also become pre-occupied with self body image, compare themselves with their peers, and develop diverse desires, and sexual interests and including all the extended implications that come with of adolescence.
The adolescent with the disability should be given appropriate material about intimate relationships as it can often occur that the child with disability can make their peers uncomfortable in the way they perceive sexual intimacy. Furthermore the adolescent with a disability may find they experience more rejection in terms of physical intimacy with peers with disabilities than in regard to more casual interaction. Seligman (1999).
Studies have shown that adolescents with disabilities are at a far greater risk of sexual abuse and that they have less sexual education. Gardner cited in Seligman (1999, p. 149) guidelines for professionals to work most effectively on parents: 1. Involved parents probably know more about their son or daughter than anyone else. Respect their expertise 2. Encourage parents to think about the sexual needs of their sons and daughters as they plan for the future 3. Include parents in planning sex education programs. 4.
Help parents get more training in sexuality and disabilities by providing material workshops, parent discussion and support groups, films and so forth. 5. The goal of all training is the empowerment of the consumer. For many adults, self-advocacy will include making their own choices about sexuality. Help consumers feel safe and confident enough to discuss their choices with their parents. Some of the social problems for adolescents depending on the severity of the disability will also include lack of community resources and adaptability.
For instance lack of accessible transportation if the adolescent is wheelchair bound, which may have a more devastating effect on adolescent social involvement. Such as after school activities and the ability pal around with their peers or have part time jobs. These problems arise more predominantly in rural areas. On the other hand the adolescent with a disability can experience a great social life with a good group of friends that will always be there for him or her and make sure that they are their friend is included in all of their social activities and events.
The critical period for the family of an adolescent child with a disability is that plans for the child’s future residential, educational or vocational options are implemented. Most parents when they first acknowledge that their child has a disability will worry about the future and wander who will look after their child when the child with a disability has grown up, and the parent is no longer capable of doing so. Although some adults with disabilities achieve independence some will not.
Those with physical impairments will continue to rely on others. Other individuals may be willing and ready to move out of the family home and into an independent living arrangement. There are agencies available which focus on the needs of young adults with disabilities, which provide important socialization opportunities within the community, contributing to personal development, competency, maturity and adaptive functioning (Whitman cited in Batshaw, 1999). For the families this can be an incredibly difficult and heartbreaking period in their lives.
The family may need assistance in successfully supporting the young adult at this time in their lives. In conclusion It has proven difficult to imagine how the parent’s and family of a child with a disability, accept, learn to cope and live ‘normal’ lives. Given the vast amount of disabilities and special needs children are born with. Every family will differ greatly with the critical periods and critical factors that the families will overcome mentioned in this essay. The severity of the disability will have stronger implications for the care giver.
Reflecting on society today there is growing momentum for the Disabled People’s Movement and support for disabled people and their families. According to Powell (2001), the movement seeks to organize on an autonomous self-advocacy basis to empower disabled people to claim full citizenship and move to independence. Normalization is tailored to overcome factors that deny the ‘normality’ of disability. Successive Studies have shown that people with disabilities have desire for participation and civil rights afforded to other members of society (Stalker and Robinson 2008).
The principle of normalization and inclusion stress the importance of people with disabilities leading ‘an ordinary life’, having opportunities to exercise choice and control, and being meaningfully included in their communities through a network of valued roles and relationships” (ibid, p. 63). This could provide families with reassurance and comfort that their family member with a disability is afforded the same rights and autonomous life as any member in society.