From protecting and passing over

From protecting and passing over

Of overprotection and transition. The situation of siblings with disabled or chronically ill children

When parents give birth to a disabled child, they have to deal with many different stresses. Everyday life and family life are changing. Existing siblings are not spared the changes either.

Understandably, the parents put all their energy into caring for the sick child. It can happen that the healthy siblings accidentally get sidelined. The author shows this problem and describes possibilities for help and support for all family members.

The doctor has told you that your child is disabled or has a chronic illness. The diagnosis is probably a shock to you, but it may also be a relief. Parents who have known for years that something is wrong with their child and have walked from doctor to doctor often feel relieved from the burden of the diagnosis. Now the enemy is named; the disease or disability has a name. You can go looking for experts and find out what therapies are available.

Families develop very different strategies when it comes to coping with blows of fate. Often everyday life has to be completely reorganized. That costs money and strength. And it takes time and energy that mother and father lack when dealing with their healthy children. You ignore it without wanting or feeling it. Unfortunately, many parents forget in everyday stress that these children also need attention, recognition and help and that it is also difficult for the siblings to grow up with a disabled sister or a sick brother.

Siblings are much closer than we parents think

The American author Francine Klagsbrun (1993) emphasizes that sibling ties go back to the first pre-language days of childhood and often persist into old age. They are the most enduring of all bonds. Parents die, friends disappear, marriages dissolve. But siblings cannot divorce. And even if they have not spoken to each other for 20 years, blood relationships and common history form an indissoluble bond.

The siblings shaped it for life …

Studies (e.g. Hackenberg 1987, 1992) show that siblings of chronically ill or disabled children can grow into socially competent, practical, self-confident people, but that they are also at risk of feeling guilty and neglected, poor social contacts and to have increased school problems.

The path your child’s development takes depends on several factors. Three very important ones are described below.

1. The personality of the parents and their relationship to each other

The more positive and life-affirming parents are about the illness / disability, the less stressful the children are. However, if mother and father convey: “We are really a badly stricken, unfortunate family”, the children will also think in this way, namely: “Life is unfair to us, we are poor, we are neglected.”

Of course, it is difficult to accept a disability, to make a life-threatening diagnosis. However, if the parents tell their children: "We can do it, even if it is difficult", the children grow up with this encouraging example and cope better with the burden.

A word about the fathers: One often hears that men would like to take responsibility away from themselves in difficult family situations and protect their workload in order not to have to think and suffer at home. However, psychologists are increasingly convinced that fathers suffer from their child’s disability or illness as well as mothers, but that they often have greater difficulties in dealing with their suffering and worries.

It is usually easier for mothers to deal with the disability or illness: they work through it. They integrate the care for the child into their everyday life with 1000 hand movements – or they adjust the everyday life to it. This is usually not possible for fathers in this form – precisely because they are employed. However, they often find another way of dealing with their child’s illness or disability: They work in a self-help group or are e.g. vote in the school committee.

2. The sibling constellation

This includes the gender and age range of the siblings. Sibling research shows that the rivalry between same-sex siblings is usually greater than between those of different sexes. That means, two brothers or two sisters have a harder time of it than brother and sister (This seems to be old folklore: In fairy tales and fables, a good sibling relationship is usually depicted on brother and sister: Hansel and Gretel, little brother and little sister about a difficult relationship, they are same-sex siblings: Goldmarie and Pechmarie with Mrs. Holle, Josef and his brothers, The seven ravens and – in the Bible – Cain and Abel.)

It follows that parents with two or more daughters or sons need extra patience, because their (same-sex) children may argue more often and compete more with each other. This also means that a disabled or chronically ill child will gain more understanding and affection from another sibling of the same sex. exceptions prove the rule!

Regarding the age gap: It is not clear whether older or younger children are more affected by the disability / illness of a sibling. Too many factors are involved. On the one hand, older children had their parents to themselves for a few years. That strengthens and strengthens them. On the other hand, they also experience first-hand how their parents suffer from the diagnosis, how they cry and are disturbed. So you not only experience the "dethronement" by the newcomer, but also clearly feel the grief that the parents now have. That unsettles them.

Especially when you, as parents, are completely caught up in your own pain and are more in the clinic or doctor’s office than at home: Take your two or three year old, whose little world has gone completely out of joint by the birth of a sick or disabled sibling , more often in your arms and explain to him why you now have so little time for him!

Younger children, who are born when the parents already have a disabled or sick child, only know the family this way – and arrange themselves more easily. Mother and father already have routine in dealing with the disease or disability. Your decision for a second or third child usually shows that you feel fit for new children.

3. The severity of the disability or illness

The message "Your child has Down syndrome", like the diagnosis of "cancer" or "cystic fibrosis", will plunge a family into deep despair. For some, after the first shock, fighting spirit arises: “We can do it!”; hopelessness increases in others. It is interesting that the severity of the disability / illness is less important than the attitude to it. For example, break an ambitious family with their son’s learning disability; a family with a life-threatening sick child, on the other hand, may be able to maintain the familiar warm and happy atmosphere.

Small signpost

No advice should be given to you here. You have probably already had enough of it. But there are hints that can help you not to neglect your healthy children with all the care for your disabled or chronically ill child.

1. Don’t underestimate your children.

You feel more of your grief and suffering than you assume – even if you strive for "normalcy" and want to show as little as possible. It cannot be avoided: Children who have a disabled sister or a sick brother learn early on what it means to be sick, frail and dependent on help. You have to be considerate early on, take responsibility and learn to live with all kinds of limitations.

In addition, your children will grow up in a performance society, whose models are youth, beauty, health and “power”. They clearly feel the discrepancy between what their families practice every day and what is the norm in society. The sibling is loved and cared for at home. “Outside” but there is a different tone – one that is still and even more strongly characterized by the demarcation to the rejection of disabled and sick people.

Your children often experience social discrimination up close. Some clearly perceive the looks that their disabled or sick siblings draw to themselves. It helps the children if they can talk to the parents about it. The positive thing is that many children develop civil courage as a result of these injustices. You stand up for the rights of the disadvantaged, gain personal maturity and assertiveness.

2. Talk to your kids!

It is very important for the siblings to know the truth about the extent of the disability or illness. Many parents find it difficult to talk to their daughters or sons about it. In some cases, they themselves know too little about the illness / disability, and in some cases the conversation about them simply hurts too much. Nevertheless, it has to be – as early, as honest, as detailed as possible, also to reduce the children’s fears. Because many ponder: "Is the illness / handicap perhaps also in me?"

In the study by the American psychologist Frances K. Grossman (1972), the conversation about illness / disability is often compared to sexual education. The participants in their study said that they were extremely interested in the development of the disability, but they did not dare to ask their parents exactly. And for many mothers and fathers, this kind of education is just as uncomfortable as talking about sexuality. They think: "If the child doesn’t ask, they don’t want to know anything more precise," and don’t start the conversation on their own initiative. That is wrong. Especially with smaller children who cannot verbalize their fears and lack of understanding, they often have to talk about the illness / disability – e.g .: “Klaus can’t because he…”

The conversation, the thorough education about the disability, is not only important to relieve the fears of the siblings. It is also used to inform children so that they can answer questions from friends, schoolmates and, if necessary, people on the street. “When someone once said to my brother ‘Trample’ because he spilled his cocoa, I said quite coolly: ‘He is not a trample, he has a fine motor disorder. And you can be glad that you don’t have one, ”says a twelve-year-old confidently.

3. Listen to your children!

Children often do not say loudly and clearly what depresses them – on the one hand because they cannot put it into words so precisely, and on the other hand because they try to avoid the topic of illness / disability. Because you may have experienced that your mother bursts into tears when asked about the heart defect of one of her children. For example, some children can only hint at how stressful they are by tender gestures such as silent stroking – or by outbursts of anger.

What parents often cannot understand are the feelings of guilt that many children have. For example, Peter pushed his brother off the swing a few months ago or Irmi wanted her sister to have a really stupid illness so that she couldn’t go to the disco. If the sibling really gets sick, then the brother or sister are secretly responsible for it! You dare not speak about it, but behave contradictory, e.g. stubborn, depressed or overly cooperative. Pay attention to these signals. You are more likely to find out what is going on in your children.

Siblings of disabled or chronically ill children have less access to their parents, because even when mother and father are present, their thoughts revolve around the “problem child”. Surveys showed that the siblings also receive less help with homework than their classmates who grow up without a sick brother or sister.

4. Allow rivalry!

Usually, in a sibling relationship, the struggle for the favor of the parents and for the best reputation in the sibling row is fought. It is about assertiveness and competitive behavior, about identity, delimitation and closeness. However, if the sister or brother is disabled or sick, the siblings cannot compete openly. The rules of the game no longer apply here.

Parents primarily expect consideration from a healthy child. The siblings quickly learn to put their own needs back. They adapt. That makes them angry, mostly unconsciously. However, they must not direct their anger on the disabled sister or sick brother. Studies have shown that parents are less tolerant of their children’s anger if the anger is directed against the disabled sister or brother. They demand loyalty and consideration.

Suppression of aggression always means suppression of other forms of spontaneity, of jokes, humor and silly things. This means that children who forbid (or get banned) any aggressiveness against the disabled sister or sick brother cannot deal with her / him freely and playfully. But that is often the level at which a healthy sibling can help the sick …

5. Don’t be selfless!

Don’t think you have to sacrifice yourself permanently now. The same applies to both mother and father: it is your duty to ensure that your enjoyment of life does not drop to zero. You have to charge your life battery again and again. Because only then can you really master everyday life. A selfless mother will soon be rid of herself and be of no use to anyone. It should be possible – without a guilty conscience – that the mother meets with friends once a week or goes to squash, the father continues to the football club or rowing. Rushed, cramped parents are no support for their children in this difficult time!

6. Find help!

There are self-help groups for almost every illness / disability (there is a list of all self-help groups at NAKOS – see below). Become a member – not only to find out where new therapeutic approaches are taking place, but also to find friends who don’t need to be explained for long.

In self-help groups you can also hear who offers family relief services, vacation leisure, short-term care places and other help. Perhaps this way one can create periods in which the healthy siblings can travel alone with their parents – or with mother or father, if there is no other option. You may also have helpful grandparents who occasionally relieve you.

So-called “sibling seminars” are offered in Bavaria and also in other countries (information at http://www.geschwister-behinderter-kinder.de or nationwide at http://www.geschwisterkinder.de).

Some families feel so hopeless that only psychotherapy can help. By the way, there are also children. The first points of contact are the educational advice centers.

7. Allow your healthy child a life of its own!

On the one hand, a great burden for the siblings of sick or disabled children is the excessive expectations that their parents place in them. They become a beacon of hope and should do everything that the disabled / sick child cannot do. This creates an often unbearable pressure, which often leads to the opposite: the sibling refuses to perform, struggles at school, hardly finds friends. On the other hand, the siblings are overprotected. Go camping with 16? No, far too dangerous not to imagine what could happen there …

Try to give your children the freedom that their peers have. And don’t impose a lifelong duty of care on them. Especially parents of disabled children tend to make plans like this: “If we are gone, his / her sister or brother will take him / her in." Such future planning means too big a mortgage for the siblings. It is better for everyone to look for a suitable place in a residential group or in a home in good time. Because especially for the handicapped adolescent: moving out at home when the siblings move out is a sign of normality. And that is good for everyone: the sick or disabled person, his siblings and his parents.

Further information

There is a directory of all self-help groups at NAKOS – National Contact and Information Center for the suggestion and support of self-help groups of the German Association of Self-Help Groups, Albrecht-Achilles-Str. 65, 10707 Berlin, Tel .: 030/8914019, website

literature

  • Ilse Achilles (2002): … and nobody cares about me. The situation of siblings of disabled and chronically ill children. Munich: Ernst Reinhardt Verlag
  • Francis K. Grossman (1972): Brothers and Sisters of Retarded Children. Syracuse
  • Waltraud Hackenberg (1987): The psychosocial situation of siblings of disabled children. Heidelberg: Edition Schindele
  • Waltraud Hackenberg (1992): Siblings of Disabled Children in Adolescence – Problems and Forms of Processing. Berlin: Edition Marhold
  • Francine Klagsbrun (1993): The sibling complex. A lifetime of love, hate, rivalry and reconciliation. Frankfurt: Eichborn

author

Ilse Achilles is a journalist in Munich, worked for several years as an editor for a women’s magazine and has published several books. She has a mentally handicapped son and two daughters.

Created August 29, 2003, last modified February 10, 2010

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