A disabled child is a child who has difficulty in playing or learning, who cannot do some or all of what his peers can do, and who cannot fully use his physical, mental, language and social skills due to various reasons. Disability may be physical disabilities or may result from disruptions in the developmental process. While physical disabilities or problems resulting from chromosomal disorders such as Down Syndrome are noticed at birth, mental disabilities emerge during the development process.
Emotional Reactions in Families After Diagnosis
Every expectant mother dreams of giving birth to a healthy child. During pregnancy, she dreams and creates expectations about her future child. Noticing an obstacle in the child in the days following birth or during the development process causes dreams to be crushed.
First Reactions
Upon diagnosis, the first reactions in the family to the situation. emerges. These first reactions are shock, rejection, suffering and depression.
Shock: The first reaction experienced by families immediately after learning that they have a disabled child is the feeling of being faced with an unexpected, unprepared situation. It is shock. During this period, families experience crying, inability to answer questions, disappointment and feelings of helplessness.
Rejection:Some parents have difficulty accepting that their child has a disability. Denial of the situation is a defense mechanism against fear of facing the unknown. This defense mechanism is developed due to anxiety about what will happen to the child, concerns and expectations about the future.
Suffering and Depression:Having a disabled child means the disappearance of the "ideal child" perception created by society. A pain similar to the pain experienced in the loss of a loved one is experienced. However, this emotional state makes it easier to accept. Depression occurs right after the pain experienced. Many families cannot see the strength in themselves to fulfill their responsibilities. As a result of suffering and depression, a situation of withdrawal from social life and isolation occurs. When this situation will end varies from family to family.
Secondary Reactions:
Immediately after the first reactions, secondary reactions occur in which feelings of guilt, indecision, anger and shame are experienced.
Guilt: The feeling of guilt is seen in almost all families with disabled children. Feelings of guilt are caused by families thinking that they caused this situation or that they are being punished by God for a mistake they made. Parents whose children are diagnosed as having a disability in later years may blame themselves for not noticing the situation earlier or for not paying enough attention to the child. Sometimes spouses may blame each other for the situation. This may lead to decreased communication between spouses. Feelings of guilt keep the anger towards the child and the situation under control.
Indecision: While some families accept the situation more easily, it may not be that easy for others. Indecision about the situation may cause family members to blame or neglect each other.
Anger: This feeling is one of the biggest obstacles to accepting the situation. Anger usually appears in two ways. In the healthy anger response, families ask “why us?” When asking the question, anger in the form of unhealthy anger is directed to someone who is not responsible for the situation.
Shame:Families see their children as an extension of themselves. For this reason, they consider the child's disability as their own fault. This may cause the family to feel ashamed of their child and the situation and, as a result, to avoid being seen with their child.
Tertiary Reactions:
Negotiation:Families with disabled children try to see their children as healthy. Because they have a hard time accepting the situation, children They strive to bring their bees back to health. For this reason, they make bargains with people, even with God, who will bring their children back to health and "cure" them. Families begin to understand and accept the situation and attempt to solve the problems. As the reality of having a disabled child is accepted, families begin to adapt to the situation. All difficulties that may be experienced in this process cause conflicts within the family and changes in the roles and functions of family members.
Domestic Relationships
The arrival of a disabled individual in the family affects all family members. It causes changes in their roles and emotional states. It causes marital problems, sibling jealousy, guilt, shame and stress in subsequent births. Parents who do not have problems in their spousal relationships share the sadness, joy and burden of the birth of a disabled child, and make plans for the child's future together. In families with marital problems, the arrival of a disabled child into the family causes the existing stress to increase further, causing spouses to blame each other and move away from each other.
One of the people most affected by the disabled child's inclusion in the family is the child's sibling. A healthy child experiences loss of interest and status, uncertainty and deprivation of playing with his sibling due to his sibling's disability. A healthy child may avoid inviting friends to the house or appearing with his or her sibling in social environments because of embarrassment about his or her disabled sibling. Depression, anger, anxiety, and guilt may occur. Especially during the first reactions experienced by the parents after the diagnosis, they may experience feelings of loneliness and inability to reach the parents.
Since the disabled child requires more intensive care and attention, problems such as behavioral disorders and school failure may occur in the healthy child due to this situation. With this Having a differently developed/disabled sibling in the family also increases the sensitivity of the healthy child and helps him or her develop positive behaviors such as empathy, taking responsibility, being patient and mature.
Difficulties Experienced by Families
Dealing with the needs and wishes of a child who cannot communicate, trying to maintain order in the family environment, coping with strange and unusual behaviors, constantly supervising the child who does not recognize dangers, and meanwhile trying to meet his personal needs and the needs of other members of the family, adequately It is tiring and stressful.
Having a disabled child brings with it many burdens. These burdens include care difficulties, disruption of home routines and roles, economic concerns, medical expenses, lack of income, accurate diagnosis, access to appropriate healthcare personnel and mental health specialists, and emotional stress.
Those who have a disabled child The social lives of families may be affected by reasons arising from themselves and their environment. In families with disabled children, exhibiting an overly protective attitude towards the child, being isolated from social life due to anxiety about labeling the child, feeling protected from looks and reactions, and having high responsibilities regarding the child's care increase the social burden of families.
The process of raising a healthy child. Even though it puts an economic burden on the family, the economic burdens of the disabled child's upbringing put more strain on families. Due to economic problems, family relationships may be negatively affected and stress in the family may increase. Studies have shown that families with high socioeconomic levels have supportive parental attitudes, and as the socioeconomic level decreases, the burden of families increases.
Families also experience physical difficulties due to care-related responsibilities. The fact that these care responsibilities last longer than for a healthy child, and in some cases continue throughout life, further increases the burden on families. It increases. Mothers take on more responsibilities than fathers in terms of care, and this negatively affects the physical health of mothers, especially.
One of the difficulties experienced by families is to provide appropriate special care for the child, especially with mental and developmental disabilities, to receive a correct diagnosis and to provide them with life skills. difficulties in benefiting from education. Families may experience problems and loss of time in reaching the right specialist for their children.
The Importance of Social and Psychological Support in Families with Disabled Children
Social support is defined as verbal or non-verbal information and advice, assistance, emotional support and behaviors given to the person by social environments. Intra-family relationships of families with disabled children are affected due to their high levels of parenting stress. Social support reduces families' anxiety levels and helps them cope with stress. Families with disabled children mostly receive support from their own families, then from families who experience similar situations with them and from health professionals.
Thanks to parent support groups established over the internet in recent years, families of disabled children can communicate with each other. They can communicate, share their experiences and get help from experts. Having relationships with other parents in a similar situation allows families to share their feelings and thoughts and find common solutions to problems. As families receive support, their stress levels decrease, and as a result, they are able to establish healthy relationships with both their disabled children and other family members and spare enough time for themselves and their children.
Mothers of disabled children How and to what extent fathers cope with difficulties is closely related to social support mechanisms. Having adequate social support systems for parents will make them stronger against the negative effects of stress.
Parents' psychological well-being
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