The birth of a child in a family is an event that always has a significant impact on the family’s structure, habits and functioning. It is not possible for a family in which a new member has , appeared to change nothing about itself and continue to function properly. In the most convenient scenario, the child appears when the couple has been together long enough to get to know each other, to understand each other’s capabilities and limitations, and when each partner has already managed to separate from their families of origin, so that they have been able to develop their own patterns of interaction. When a new member joins the family, the parents are confronted with the enormity of the demands placed on them, the rhythm of their day changes, and the possibilities of fulfilling their own needs become different. It is often the case that this change is initially experienced as a burden, a loss of autonomy. If the child does not sleep through the night for several weeks, has colic and cries a lot, the initial care can be very exhausting and stressful. Over time, the parents get to know the little one better, are able to read his or her needs and cope with his or her complaints. This stage of family development requires family members to be flexible, to change their roles, to give up a certain amount of free time to care for the child. The loss of autonomy is compensated for by love for the child, so that, despite such major changes in the way they function, most families remain happy, deriving much satisfaction from their new roles. The stage of the family with a young child therefore requires the couple to have developed and clear rules of coexistence and a certain emotional maturity of both. In a properly functioning family, usually the developmental crisis is resolved, the family adapts to the new requirements and can continue to function as a whole.
It is different when a child is born with a disability. Its arrival in the family causes a real revolution, an emotional storm from which, despite the family’s good resources, not everyone will necessarily emerge unscathed. The task that the family has to face often requires radical changes from its members, and the crisis caused by the appearance of a sick child in the family will not necessarily pass, it may have to be faced repeatedly, and it may even be impossible to achieve a stable life in the family.
In this paper, I wanted to present the case of a family of a child diagnosed with a genetic syndrome, Phelan McDermid syndrome. I will try to look at the stages of adjustment of the child’s family to the new situation and the ways in which the mother copes with the challenges of being a parent of a disabled person. I will try to deepen my understanding of the family’s emotional situation through psychological concepts I am familiar with.
The family’s adaptation to the child’s disability is a complex process, consisting of specific phases, requiring many changes and happening over time, which varies according to the family’s adaptability. Drawing on interactional and systemic concepts in considering family functioning, the following assumptions can be made about families raising children with disabilities:
1. Problems of parents and other family members and problems of interaction between the child and parents should be treated as no less important than disorders of child development.
2 The child’s disability brings about changes in the living conditions of the family and can exacerbate existing tensions and conflicts within the family. It is very important to mobilise all the family’s adaptive capacities, which include transforming the behavioural patterns of family members, changing the hierarchy of values or changing the positions they occupy in the family.
In analysing the process of the family adapting to the situation of the child’s disability, the time factor is extremely important. Phenomena happening in the family are considered in their interrelationships and not in a cause and effect manner.
Parents who find out about their child’s disability experience intense negative emotions. Relationships between family members and between parents and the disabled child may be disrupted. Generally speaking, the development of parents’ feelings can be depicted as a process of moving from the question “why did this happen to us?” to “what and how can we do to help our child?”.
Before outlining the phases in which this process takes place, I would like to mention that the issue of finding out that a child has a disability does not always involve receiving a diagnosis quickly. Sometimes a parent will slowly come to terms with the fact that their child is not ordinary for months or even years, before finally learning about a particular illness. The following stages of adaptation may therefore vary somewhat in duration and occurrence depending on the type of situation associated with the diagnosis.
The first phase is a period of shock, or emotional upheaval, which occurs immediately after parents learn that their child has a disability and will not develop properly. During this time, feelings such as despair, pain, grief, anxiety, feelings of hurt, hopelessness and helplessness emerge.
In the case of the family described in this paper, the moment the mother found out about the existence of a cyst located behind the child’s cerebellum was the beginning of this phase. Although it later turned out to be clinically insignificant and only one of the symptoms in a further stage of a diagnosed genetic defect syndrome, at that moment it seemed a very serious situation, a necessity for neurosurgical intervention and an inability for the child to develop properly. The patient describes the experience of this moment as follows:
Interview with neurosurgeon. Maja has a cyst in her head located cerebellarly. I don’t understand. What does that mean? Can it be taken out? You can’t, ma’am, it’s unreasonable. What do you mean you can’t? There’s a cyst there. It’s preventing her from developing normally. It has to be taken out. I repeat to you that it’s impossible, I won’t talk to you anymore. But…Please explain it to me, I don’t understand. I have explained everything, I will not operate on your child.
I sit, I cry, I call my husband, my mum, my mother-in-law, my brother, my nephew, my friends. I hang up the phone and cry. A doctor with no specialty and no emotion on her face walks in, sees me, walks out. Her look says hysterical. And I am indeed hysterical, pouring out my despair in dozens of phone calls.
During this period, misunderstandings and arguments can arise. It is sometimes the case that parents lock themselves in a circle of their own experiences and do not help each other. Behaviours towards the child are filled with anxiety or guilt. This period is followed by another phase, a period of emotional crisis, known as the period of depression or despair. Parents are not yet able to accept the fact of the disability, they feel depressed, they perceive their situation as hopeless, they are helpless. They experience disappointment and often feelings of guilt. They feel pessimistic about their child’s future. Experiencing these problems exacerbates family tensions, disorganisation can occur and previous conflicts can be exacerbated. It happens that during this time, fathers, less often mothers, gradually withdraw from the family or even leave.
The experiences of the patient described here were very strongly marked by both depression and guilt, the intensity of which reached depressive levels: We are leaving the hospital. I am 5 kilos thinner. At home I lose another 5 and gain the figure of a teenage anorexic. I plunge dangerously into a familiar place. My whole body aches. I have no strength to do anything. You have to go to another neurosurgeon, you have to get other opinions, maybe she can be helped, my brother talks to me a lot. I don’t know, I’m scared, you’ll come with me. Sure, I’ll take my leave says my brother. But I don’t have the strength to go anywhere. I can only persist, immerse myself in anxiety, pretend to be a mum to my three children, pretend to be a wife to my husband. I feel it’s all for nothing, everyone can see what a bad person I am. I have brought a being into the world who will suffer, through whom others will suffer. I don’t deserve love. Welcome to the abyss.
Sometimes the tensions and conflicts experienced by parents limit their interactions with the child and interfere with them. Sometimes they limit their interactions with the child only to care and nursing activities. During this period, the functioning of the whole family is disorganised.
The next phase is referred to as a period of apparent adjustment to the situation. During this time, parents often make irrational attempts to cope with the problem. They use various defence mechanisms to deform reality according to their desires. Denial is common at this stage. Parents, for example, may not accept the information that a child is mentally retarded, explaining his or her developmental delay by being inattentive, lazy, malicious or stubborn. Sometimes they try to undermine the diagnosis, deny it, seek another diagnosis. The period of denial in the patient I described, is well illustrated by the following recollections quoted by her:
Visit to a neurologist. Maja is 15 months old. 5 minutes of looking at cards, a sparse interview, a minute of playing with the child with the help of a moulted greyish coloured dog mascot. Ma’am the case is serious, I suspect autism spectrum, please go to a psychologist and to rehabilitation. What do you mean autism? That’s impossible. She has a cold now, she is not herself. After all, I would have noticed. And are you a child psychologist? No? Then you don’t know. Goodbye, here’s your coat, we’re leaving.
I am standing at the reception desk, Maja is tugging at my ear, the nurse is smiling at how cute the little one is. I am walking through the November housing estate of Sikornik in Gliwice, it is snowing wetly, my fur is unbuttoned, I am cuddling Maja, I am not cold. It’s impossible, he’s wrong, impossible, impossible.
Long conversations on the phone. A thousand tears shed. Words from the receiver like honey to my heart: she doesn’t look like an autistic child at all, that doctor is a quack, it’s too early for such a diagnosis, how could he scare you like that, it’s nonsense, after all she’s a normal child.
Many parents do not accept the fact that their child has a disability. There may then be an unfounded belief that the child will be completely cured. At this time, they may turn to unconventional methods, spending a great deal of money on all sorts of ways to ‘cure’ their child, such as herbalism, bioenergetic therapy, or the practices of all sorts of quacks who call themselves healers. The patient I mentioned sought help in faith, attended all kinds of healing meetings, and prayed over her daughter with her whole family, truly believing for a moment in the possibility of her being healed by a higher power.
Evening prayers over Maja, we put our hands on Maja’s head with the family. Even Tom participates, although he looks at me like I’m crazy, but says nothing. A friend mentions praying to Mary, which has a special power. 54 days a week, I say Hail Marys at night. I ponder the mysteries of the rosary. I somehow feel a closeness to the Saviour’s mother. I am with her in her suffering for the suffering of her child. Yet nothing changes. The Great Mother has not kept her promise to bestow graces on anyone who perseveres in this masochistic act. As it is, I probably don’t believe enough, I pray wrongly, I have left something out. I go to masses for healing. All around me, the Holy Spirit lays the prayed over as if in a trance on the floor, they fall down with a bang full of faith and trust. I do nothing, walk and watch, tears pouring from my eyes.
Sometimes, during this period, parents look for someone to blame for their child’s disability, accuse doctors of negligence, suspect higher powers of wanting to punish them for their sins. Sometimes parents blame each other. Sometimes they blame themselves, mothers may look for negligence in themselves during pregnancy, fathers direct accusations towards their genetic material. Eventually, parents come to the conclusion that the child cannot be helped as much as they would like. They accept the diagnosis. They may give in to pessimism and apathy at this time. Some parents start to idealise the other healthy children, finding in them special talents and skills. In extreme cases, there is an exclusion of the disabled child from the family and an attempt to live as if he or she does not exist.
The last period highlighted is the constructive adjustment phase. The essence of this time, is the development of an attitude of seeking viable ways to help the child. This is when an attempt is made to find out the real causes of the child’s disability, how it will affect his life, how it will affect the whole family, what the future will be like. For the patient described in this thesis, the turning point was hearing the diagnosis of a genetic defects syndrome, which came only three years after the search for the girl’s developmental delay began:
The doctor opens the file, hands me a sheet of paper with the description of the genetic test. He explains straight away that he knew what it was, that he had a nose, and ordered a more thorough examination, because this basic one, reimbursed by the National Health Service, would not explain anything to us. He is very friendly, answers questions, explains. It’s Phelan McDermid genetic defect syndrome caused by a deletion involving a fragment of chromosome 22. I’ve never had a patient with this diagnosis before, he says and I notice that he is clearly excited. He pulls out his phone, asking if I can take a video, please don’t be angry, but this will be very interesting material for students. My head nods on its own that yes, because I am somewhere outside my body at the moment. I am not the one who has just found out that my youngest child has a serious illness, that she will be disabled and will never achieve independence. I watch, as if watching from the sidelines, a mother calmly planting her daughter on her lap, urging her in a quiet voice as she made the gestures and assumed certain positions expected by the doctor, so that the medical students could get the most out of her. After a while, however, I come back to myself, feeling heat on my face, a monstrous weight in my chest. My body brings me back to myself. Yes, it is me. I am suffering to the point of exhaustion, and yet I know I will endure this, I will survive. Somehow, I don’t know where or why this conviction came from at that very moment, but then I felt it strongly. This thing has a name, it is a specific illness, it is not the result of my negligence, not my fault. I also know with certainty that I will strive to make my child happy. I want to get out of here now, to go home as soon as possible. They need quiet and a friendly place to start putting it together. I need to be with my loved ones.
Parents start different types of parenting interventions, focus on rehabilitation, therapy, pedagogical and psychological interventions. Positive feelings emerge in the parents’ experience. They begin to notice their child’s small improvements and to enjoy them. The child is not just a passive person who accepts the parents’ interactions. The interaction model (I. Obuchowska, 1999) assumes that the parent-child relationship is considered in both directions. On the one hand, the parents gratify the child by satisfying its needs: they care for, feed, caress, play with and teach it. On the other hand, the child gratifies the parents by their attachment, their well-being, the joy shown at seeing them, their gratitude, making them stand out. The child’s behaviour, in turn, mobilises the parents to continue to work more persistently with their child. This situation is well illustrated by the description of a scene from my patient’s life, which showed this interaction in such a way:
Maja runs into the living room straight from the garden with a victorious face. She’s in a great mood. Tom and I are sitting sprawled in armchairs, watching a comedy series. When I see Maja, I open my arms and call out: come cuddle, quick. Maja jumps onto my lap and sprinkles kisses on my face. After a while, she sits up, looks at her husband and smiles beautifully. Go to your dad and hug him too, I say. She tilts her head, looks at him and for a moment seems to be teasing. She gets up, jumps into his lap and snuggles in tightly. Heart patch.
Only those parents who achieve the last of the states described above, get out of the circle of difficult and paralysing functioning feelings, are truly able to help their child.
Parents use characteristic coping strategies to deal with the chronic stress of raising a child with a disability. Those who use emotion-focused strategies not only reduce negative emotions, but may also deliberately reinforce positive ones. Creating positive events is such a way. Intentionally incorporating positive experiences into one’s life that evoke feelings such as pleasure, delight, pride, joy. This could be meeting a well-liked person, going on a trip to the mountains, communing with nature, or simply celebrating the good experiences that come from contact with the person you care for. A child’s smile, their loving gaze, little arms wrapped around their neck — all of these can become sources of pure joy. Coping can be about noticing these positive experiences and cherishing them within ourselves. The mother of the disabled girl I described learned to take joy in the increasing closeness with her daughter as the child grew. She also became more physically active, taking her daughter on long walks and outings, celebrating contact with nature. She greatly valued relationships with friends who accepted her child and with whom she felt comfortable:
We are visiting friends, Bartek, Zosia and their three children. They have a large five-room flat. Maja seems to sense the friendliness around them, because from the start she is cheerful and looks around curiously. She explores their entire flat, jumping up and down and throwing pillows on all their beds. She clearly likes it here. She peeks at Bartek’s plate, who shares his portion with her without blinking. Zosia speaks to the little one as if she understands everything and answers her questions. Tom and I are having a fantastic time, we are relaxed.
Some parents use meaning-focused strategies, which include making priorities more realistic. Many mothers caring for chronically ill children give up their jobs, making it a priority to take care of their child and support their child’s health in every way possible. Such a decision can be adaptive especially in situations where the child is profoundly disabled and requires round-the-clock care.
In the normal course of a family’s adaptation to the situation of a child’s disability, there is an adaptive transformation of goals. At the beginning of the adaptation to the child’s illness, the parent often aims to make his/her ward like other children. Over time, as she recognises the child’s abilities and limitations and slowly comes to terms with them, the goals change to more realistic ones. The mother of an autistic child stops expecting her child to have numerous social relationships and starts to enjoy having one good friend. The parent of a child with severe mental retardation already strives for full independence, but feels joy when the toddler learns to communicate with simple words and puts on his trousers by himself. Adaptive goal-setting makes it possible to reduce tension in the whole family, to gain more time, to focus on other things than those related to the disabled child, to devote more time to the other healthy children.
If parents manage to adapt constructively to their child’s disability, they may be able to find benefit in stressful experiences. I once spoke to the dad of a child with cancer, who shared with me the observation that he had learned to find extraordinary joy in doing simple things in moments of respite from caring for his child. Parents who manage to survive the crisis and adapt to the new situation may discover that they have become slightly different people, more open to relationships, empathetic, emotionally mature. This phenomenon is referred to by psychologists as post-traumatic growth (H. Sęk, I. Heszen — Celińska, 2020)
Completion
The process of adaptation of the family to the child’s disability takes place in specific phases, the duration of which depends on very different factors. The personal characteristics of the parents, the severity of the child’s disability, the social support the family receives, the family’s material resources, the quality of the parents’ marriage and many others that I cannot list here are of importance. Regardless of the length of the phases, for the family to adapt properly to such a difficult situation, it is necessary to accept the fact of the child’s disability and to build realistic goals. The constructive phase of the parents’ adaptation to their child’s disability gives them the opportunity to build a correct relationship with their child and further develop the whole family system.
The analysis of the problem of a child’s disability in the family shows how important it is to provide psychological support to the family at every stage of its adaptation to the situation in which it finds itself. In the Polish reality, however, the child’s family is largely neglected by health professionals. Doctors, psychologists, educators and therapists focus mainly on the diagnosis, treatment and therapy of the child, forgetting that behind every little patient is his or her parent, and that the parent’s ability to cope with the problem is not always sufficient. The indifference of some doctors to the despairing mothers of young patients in hospital paediatric wards is striking, and they often communicate diagnoses in an impersonal, almost cruel manner. A proper conversation between the doctor and the child’s mother, psychological support immediately after the diagnosis, taking into account by the other professionals helping the children the fact that the parent does not always have a strong enough capacity to cope, could prevent many psychological crises of the individual and even of the whole family system. There seems to be a great need for psychological training on how to talk to parents of children with disabilities, aimed at professionals dealing with young patients. The aforementioned issue, however, is already beyond the scope of this paper and is only brought in to provoke reflection on the subject from the readers, following the principle “a drop drills the rock”.
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