MS and Children Dr Alexander Burnfield What are the major issues for a child of any age when a parent has MS? Well, MS is a disease which belongs not only to the person that has it physically but to the whole family. Everyone in the family will have some adverse effect. This could be, in the case of children, that the parent can no longer be a parent in the normal sense of the word or it could be that in some way they have to do more in the family than they did before. Another problem could be that they’re embarrassed by their parent in front of their friends or even that it could be a secret that the parents have, from which the child is excluded. There’s a whole variety of things that can impact on a child in a family where there’s MS.
Can children gain a good understanding of MS and what its implications are? Yes, children often pick up problems in one of the parents long before the parents expect it. Children are often wondering what’s happening, thinking "there’s something wrong with my father or my mother…", "there’s something that I don’t understand." They can be very frightened. They can often jump to conclusions that maybe one of their parents is very, very ill or about to die or that there’s something wrong with their parents' marriage. It’s important that children are encouraged to express their understanding, their emotions, their feelings and beliefs at an early age. It’s not just about waiting for them to ask questions but it’s important to set up an opportunity so that children can talk and feel reassured and involved in the decision making process that the family has. So, yes children can be shown what MS is about by looking at, for instance, illustrations in special books and booklets that have been provided for children by various MS societies. They can be given diagrams. They can be told stories. They can be put in touch with other children who have similar problems or who have parents with MS. They can have support groups for themselves. Older teenagers who are perhaps doing an awful lot around the house, and perhaps doing a job which one of the parents would have done, often feel very stressed. They benefit from support groups especially for teenage carers and these exist in lots of countries. There’s a lot that can be done to give children a full explanation of MS at their own level whilst at the same time listening to their feelings, fears and beliefs about what is going on. They can be fully involved in the process of understanding MS, making sure there are no secrets that they can misinterpret, be scared about or get the wrong idea about.
What worries children most when they learn that one of their parents has MS? When they learn for the first time that the parent has MS it will either mean nothing to them at all or it may mean that they think that their parent may not have long to live. Another thought that will occur to them is "Will I get this as well?" Another worry is "Have I caused this?" Very often children will think in some way their very existence is responsible, perhaps if the MS came on when they were born and people keep saying "Oh it was after Johnny was born that mum got MS." They can identify with that and feel they’ve caused it. Sometimes children feel that their behaviour has made life stressful for a parent and that has caused MS. They’ll feel guilty about that and they need to compensate. They may get angry about that and behave in a way which is disturbing or distressing to other people. Children can have a lot of potential worries which can be alleviated by sharing and encouraging them to talk. They can be encouraged not to feel excluded and not to go on believing in the wrong and frightening things which aren't, in fact, true.
Do these worries change depending on the age of the child? A very young child really won’t have much of an idea of what’s going on but sometimes they’ll pick up anxiety, tension and sadness in the family and not know why. An older child will obviously know that perhaps a parent has been to the doctor. There may have been some discussion about MS and they will know that this is an illness or a disability. They may jump to conclusions about this in a more grown up way than a very small child, but you do have to treat children differently according to their age. A very small child can only appreciate certain fairly basic ideas whereas a teenager can be very, very sophisticated. Often there’s a very good grasp of biology and medicine, perhaps more than their parents would have done at that age. As a result they can be fully involved in the conversations and given information about MS almost at an adult level or even at an adult level sometimes. In between there are children or young teenagers who can readily jump to wrong conclusions or who can come to beliefs which are not true or which are very disturbing or frightening. It is very important that children of all ages are able to appreciate that they haven’t caused the MS, that it isn’t contagious, that they won’t catch it and also that it’s very unlikely that they themselves will get MS. There is, as you know, a very slight chance that people with MS have other people with MS in the same family although it is not a hereditary disease. Children often worry
about things like that and then they feel guilty that they should have thought of themselves before their parents. You can get an escalating situation of anxiety, fear, people not talking to each other, and misunderstandings developing.
How should a parent tell a child about MS? A parent needs to realise that each child has their own level of understanding and ability depending on their age, development and maturation. But all children will have some idea at an early stage that there’s something going on, that something is bothering the parents for instance. It is important that the parent or parents give a child the opportunity to talk about his/her thoughts, feelings and beliefs as soon as possible. In other words, it’s important not to wait until a child asks a question but to get in there early and provide an atmosphere where a child can say what they’re worried about or ask questions. They can then be given answers suitable to their age or development. Obviously with a very young child you don’t go into any particular detail, you say that mummy or daddy has been to see the doctor, that they’re not very well at the moment, that they will probably get better quite soon and it’s not a thing that’s going to have a long term effect to worry about. That is a simplification, and it might not be strictly accurate, but it’s accurate enough for that child at that age at that stage of development. It would be unfair on a child to burden them with further information about prognosis and different types of MS. More sophisticated information might be very suitable for a teenager, for instance, especially a fairly mature teenager who wants to know what the situation is, what the outlook is, and what to expect for the future. You have to judge it very carefully on the abilities and the level of maturation of the child concerned.
What can be done to help children through the initial period and for ongoing support? The initial period is often a time of great anxiety for a parent or parents. MS is a difficult disease to diagnose and there will often be a lot of stress for the parent around that time in worrying and wondering what’s happening. This will have been picked up by the child so it’s important to share with that child as early as possible what is going on. Be open but not frightening and not scary to the child. Once the child is aware that there is a problem you can begin to explain it in more detail. There are booklets for quite young children and also for older teenagers about MS published by various MS societies which can be shared with the child not necessarily left alone with them but shared with them or read with them together.
There are also websites that are available and there is now a very good support system for children. For instance, there are very good support groups where children with a parent who has MS can meet each other. There are even email addresses that children can use where they can actually contact each other by email. One website has a whole list of children who have parents with MS, giving their email addresses and saying that these children would welcome an email from someone who is in a similar situation. There are extremely simple ways of supporting children and there are quite sophisticated, technological ways of supporting children. I think more and more children will expect to be able to use technology to look at websites and I know there are now developing pages on certain websites specifically for children and teenagers. I think those will increase as will the booklets, the information, the opportunities to meet other children and even special study days for families including children. I know that when I went to New Zealand with my daughter, Clare, who was seventeen while we were over there, we met with all the New Zealand MS societies over a matter of five or six weeks. At one of them we took part in a session for children and Clare went off with seven children whose parents had MS. They had their own room and discussed what it felt like to have a parent with MS. I know that was very interesting for my daughter and also very interesting, I believe, for the people concerned. This was some years ago and I’m sure that things have progressed a long way since then. I know some of the things that are happening throughout the world are of a similar nature. Clearly, it’s important that families themselves have support. It’s no good supporting a child if the parents aren’t supportive, and if the whole family isn’t given some help; neighbours, friends and families can support each other very often, provided they’re in the picture and they’re trusted. It shares the burden. It’s very important to include local communities. I mentioned the MS societies as an example, but there are other areas of the community less specific, including just general neighbours who could be called on for help.
How does MS impact the lives of children with a parent with MS particularly in terms of the stress and the emotional reaction? MS can be a very frightening thing for anyone to deal with in the family but especially for children who are often quite vulnerable and who don’t often feel they have much power or say in what’s going on. Children can be very anxious about MS existing in one of their parents. They can be frightened of losing the parent, of severe illness or of a parent being taken away from them into a residential home or hospital. They can be afraid of death. They can be frightened of having to do too much, of having to do the work of a parent. They can be angry about MS.
It is a very common feeling for children to feel angry with a parent for being different, for being embarrassing in front of their friends, for not doing the cooking, for not doing the housework, for making them have to do jobs. It sometimes happens. Children can feel angry generally about the unfairness of life and maybe also angry and sad about the fact that their family hasn’t got as much income as it had before because of the MS and it hasn’t got the housing or the accommodation that they would like to have. There are lots of reasons in a family why children will feel anxious, sad, angry and also quite frightened. Sometimes children feel guilty. They often feel that in some way they caused the MS because it may have developed in their mother, for instance, soon after they were born. Sometimes we refer to that and a child can often cotton-on and think that they are the reason for the MS. Other children will feel that their behaviour has made the MS worse. They will overcompensate and be very helpful but they will in fact be losing out in a way themselves because of that. It is important that the burden is shared, that communications are listened to and that people are given the support and understanding and help they need either professionally or from the nonprofessional. It’s always important to explore what members of the family, neighbours and friends can contribute. Aunts and uncles, cousins and brothers and sisters can all help out if someone in the family has MS. They can be model figures or role models for the children and all of them have a part to play. When things become extremely severely disturbed or disrupted, for example if a child becomes so sad or angry that their behaviour is affected, then professional help might be needed. Sometimes where there’s MS in the family a child they feel so anxious that schoolwork will be affected and the child will come across as anti-performing at school. He or she may be bullied or may start bullying other children if his or her feelings or anger can’t be expressed or if he or she feels different or lonely or frustrated in some way or if attention is not going towards them but towards a parent. Children can feel left out and uncared for. There are many, many emotional stresses upon children. Having said that, there are also some positives as well. I don’t want it to sound as though this is the end of the world for children. A lot of children do adapt very well to the stresses involved. They do receive support and can share their feelings and beliefs, and grow emotionally as a result of that.
What impact does the age of the child have when MS is first introduced? A very young child often won’t be able to use words in the same way that an older child will. Behaviour for a young child may become excitable or aggressive. He or she may have temper tantrums or start fighting with another child. He or she may become extremely withdrawn, go into a corner
and actually become quite depressed -although it may not be recognised that it is depression. As a child gets older the problems they have can be expressed more verbally or expressed in stories or art or paintings. Problems often aren’t expressed verbally because the child or young teenager may not feel that they’re listened to or that parents couldn’t cope with what he or she has to say or his or her fears. It’s important to provide an opportunity for children to match their age. Very young children should be given things to draw, told stories and involved in play about the sort of situations they may be worried about whilst older children can be helped to, say, write poetry or talk to one another. If the problem is so severe that the child has become depressed or has an anxiety problem or has become very, very aggressive and so can’t function in an ordinary classroom, then of course professional help may need to be offered. However, a lot can done before that stage and that next stage may never have to happen for many, many children.
Is puberty likely to complicate things further? Puberty is a very difficult time for some children and for some parents anyway whether MS is there or not. Hormones are changing and a child’s behaviour may well be changing around that time anyway. If a parent has MS and a child is going through puberty then there are just extra stresses around which have to be taken into account. A child who may have been very passive and relaxed may become very demanding or rebellious or difficult. Parents talk about their children having a completely changed personality, sometimes this can happen and it’s often a phase that the child is going through and they will come out of. What is important is that it is recognised as a phase, that the child isn’t labelled as being bad or naughty or uncaring or thoughtless. It should be recognised that the child is also going through a period of growth in puberty and changes of early adolescence with all the hormone imbalance that occurs. This is a very frightening and difficult time for children so it has to be recognised and taken account of.
Does MS change the relationship that a child has had with his or her parents? If a child has always known his or her parent to be healthy and physically normal, able to run, walk, and play, then it is a big stress and a big shock if that parent suddenly changes into becoming disabled and no longer able to do these things that they’re used to. It’s quite difficult for them, emotionally, to cope. If a child is at an age where he or she is coming into frequent contact with their father and playing games and that’s when the father develops MS, for instance, then the child will have to deal with MS
almost as soon as the parent. The child will have to deal with the changes as well and that can be a pressure. Perhaps it’s easiest for children where a parent maybe develops MS very soon after a child is born or perhaps even has MS when a child is born. In these circumstances children don’t somehow have to get used to completely new parents. However there is no doubt that MS in itself has an effect on a parent's ability to be a breadwinner, a cook, do the housework, and be a mother, especially when they have to cope with problems. If you’re a father, the ability to play football for instance, or take kids out in the car to amateur dramatics or clubs or things like this is affected. The whole role of parents will be different if they have MS or one of them has MS than if they didn’t. Sometimes this will be very frustrating or embarrassing and will make children feel that they’re different, somehow, to other children. They can resent this or they can get very sad about it and it can affect the way they relate to their parents. Sometimes children will feel guilty and they’ll want to compensate for that by doing all they can for a parent. They can live their life meeting other people’s needs rather than their own, and feeling guilty if they’re doing anything that they feel is selfish because it’s not thinking of someone else first or their parent first. This is not healthy for them at all. The balance is not as it should be and is not appropriate in that situation. Other children will react very negatively and I’ve come across several occasions where a young teenager will become so negative that he or she wants nothing to do with the MS. He or she won’t touch the wheelchair, won’t go out with the parent in public and will have nothing to do with MS society meetings or activities. Often later on in life the teenager changes and becomes a member of the local MS branch. If you talk to people who are in MS branches you find that they all have different histories to tell about how old they were and what the stress was and how eventually they were able to come to terms with it enough either to take part or not as the case may be. But the big factors are what age a child is, which parent has MS, how disabled they are and what activities of childhood are affected.
Do parents have preconceived ideas about how their children are going to cope? Yes, some parents are very anxious about how their children might or might not cope. They get uptight about it and they take their children off and recommend that they see people and are given help when actually it’s not really necessary. The child will adapt and cope quite well providing that information is shared, that they’re given support and the MS is explained to
them according to their level. Other parents are totally unaware of how the MS may well affect their children as well as perhaps their partner and are quite surprised when the child is found to be not performing very well at school or is getting into trouble, running away, bashing his or her brother or sister and generally having some severe behavioural problems. It doesn’t always occur to them that it might be MS related. You do get these sort of extremes really. One type of parent is very anxious, over protective and over responsive and actually that can be quite unhelpful. The opposite sort of parent is unaware and hasn’t even thought of it. There needs to be a balance in awareness and reasonable action so children aren’t made to feel that they are a problem, that they are part of the family and that they can play a role in that family in supporting the parent with MS and also being supported by the parent with MS as well. It’s really very much about balance.
What are both the positive and the negative behavioural changes when a parent has MS? Right, let’s start with the negative, or I prefer to say "less helpful" behaviours that can occur when a parent has MS. The two extremes are 1) withdrawing and denying that there’s a problem and 2)reacting to the problem either by anxiety, anger, aggression, fear or by behaviour which is active and designed to either seek attention or as a cry for help. Where there is a parent with MS a child will often behave in way which is attention seeking, which is showing insecurity or which is indicative of fear, resentment, anger or of guilt. This may come out as so called negative feelings like depression or self hate. They may develop things like eating disorders. More severe psychiatric problems can occur as a result of this turning inwards of feelings and beliefs and thoughts which can’t be expressed. On the other hand you may get kids who do express their feelings and thoughts and beliefs but they’re not listened to and if they’re not listened to they have to express them louder and louder and louder and if they’re still not listened to they’re going to do something which is much more dramatic. They may bang someone on the face or get excluded from school or do something quite aggressive to a parent or to another member of the family or just scream, shout, drink lots of alcohol or take drugs in an extreme way in order to emphasise that there’s a problem. Sadly there are occasions when teenagers take overdoses and do selfdestructive things like cut their wrists when they are feeling very isolated, anxious and not listened to. The key thing with all these extreme behaviours is that the child hasn’t been listened to. Nobody has picked up the needs, the anxieties, the fears, the beliefs of hopelessness or that the worry that a
parent’s going to die or that there’s a terrible secret or that parent’s are going to split up. No-one has listened to these concerns. On the other hand the child that turns in to itself and becomes withdrawn, are not being listened to either - not because they’re not showing their feelings but because the child is too good to be true. In a classroom teachers will often ignore a child who is quiet and depressed at the back because he or she is not being a problem. The teacher will soon pick a child out who’s a bit aggressive or disruptive to other children. Children do get attention through being aggressive and disruptive to other children but often it’s the wrong sort of attention. Children don’t get attention from being depressed, it’ll be rather convenient for everybody if he or she is not a nuisance sometimes. We all have to be aware of these two extremes and how in the middle there is a balance. Children need to be listened to, understood, given a part to play in family life, in school life but not disregarded or reacted to in an extreme way and negatively and say labelled as a bully or an alcoholic or someone who’s using alcoholic drugs or solvents or someone who is disruptive or aggressive. These are labels which may cover over inner anxieties or insecurities and lack of love. At the time we must make sure that we don’t ignore a child who doesn’t seem to be a problem and be aware and pay particular attention to children of someone with MS because inevitably they are going to have some feelings and beliefs which they may be unable to share. Positively a child can behave in a very caring and understanding way to a parent who has MS and may be extremely helpful in the family both in supporting the parent with MS and supporting the other parent. The child can learn to become more confident, to pick up feelings of other people, to be supportive and to actually have a very contributive and important role in the family and the community as a result of a parent having MS. The downside of this is that the child can be taken advantage of sometimes. In extreme cases young carers are exploited by, for instance, the social services department or a family where it’s rather convenient that a particular child is doing all the work and looking after and soaking up all the stress. But on the positive side many children actually don’t get exploited and are supported and are able to pursue their own interests as well and can get a life of their own independent of MS and come out of the whole experience a lot more mature and confident and articulate than they probably would have been in other circumstances. There are positive gains for children of MS and all the research shows that it isn’t necessarily a bad experience at all in the long term. Just as many, if not more, children are coming out of this experience having benefited from it in a strange way than there are actually who have been hurt by it in some way.
From a parent’s perspective what can they do to help their child to adjust? As well as explaining his or her own needs or own difficulties with MS or a partner's problems, it is important that the parent is also able to appreciate the child’s needs for attention, for time, for understanding, for help with homework, for assistance in pursuing outside activities and in having a life completely away from the MS. Again it is important to get the balance right and not take advantage of a well-meaning and helpful child’s enthusiasm and energy. If a child is taken advantage of to too great an extent he or she will become unable, later on in life, to make relationships and do things for themselves and live a life which is other than meeting other people’s needs. The child may become resentful or feel depressed about this situation at some point and develop mental health problems. It’s very important for the parent to appreciate the child is not responsible for the MS is not going to catch the MS, is unlikely to develop MS themselves and needs to be compensated for the negative aspects of having extra work around the house, have things that they can’t do happen because the parent has MS and can’t take them to outside activities. There has to be some compensation. Family members, the community and friends can help by doing things that the parent with MS can’t do or the parent who has not got MS but has extra burdens can’t do. Children can be supported perhaps by cousins and aunts and uncles and other people, friends, school, local clubs to enable them to do things like other children do normally. It’s important to minimise the differences that children feel and minimise the extra work they must have to do to minimise the guilt they have about having perhaps having some responsibility for the MS. Even though this is not true, it is not an uncommon feeling among children whose parents have MS.
In short what would be your words of advice to a child whose parent has just been diagnosed with MS? Well, the words of advice would depend upon the age of the child. For a very young child it would be difficult to give them words of support. You would have to give them emotional support in the form of attention, time, play time and quality time and encourage them to talk about and explore their feelings about what’s going on around them. I wouldn’t say there’s a specific piece of advice for the very young child because they wouldn’t necessarily appreciate it. As a child gets older you can give them a bit more reassurance. For instance you can say "Your parent has MS but that doesn’t mean to say you all can’t have a normal life as a family." Even the life expectancy of a parent is not significantly reduced by MS. We now know that at least 75% of people with MS live fairly normal life expectancies. That can be reassuring to a child. You can also reassure a
child that in no way are they responsible for causing the MS, either by being born at a particular time or by their behaviour when they were younger. There are certain reassuring things you can tell a child. First of all, it’s unlikely he or she will get the disease. Secondly, he or she is not responsible. Thirdly, he or she can’t catch it and fourthly, his or her parent is likely to live quite a long time and maybe a fairly normal life despite having MS. As a child gets older you can put them in touch with literature, websites, meet other people of their own age so they can find out more about MS and feel more supportive. A lot depends upon the age and the nature of the child but the one thing they must all have in common is that you have to actively encourage that child to share feelings, fears, beliefs and thoughts rather than wait for him or her to ask questions or make comments. Often the child won’t. The child may be frightened to or doesn’t know how to. The child needs to have that proposed. The words of the advice are that "you are not responsible," "you won’t catch it," "the MS needn’t alter your life drastically and there is lots of support available."
What would your words of advice be to a parent who has been diagnosed with MS and who has children? Depending upon the age of the children, how severely disabled the parent is and what type of MS they’ve got in general my words of advice to the parent would be very clear. Don’t have secrets from your children. Make sure you encourage them to express their feelings and thoughts about what’s going on and include them in decision making. Don’t make them responsible either for what has happened or for doing too much work in the house or that supportive stuff rather then letting them get their own way. To repeat - make sure you don’t have secrets, you allow them to talk, that you don’t make them feel guilty, you don’t give them too much to do and you allow and encourage them to get a life of their own.
What would you consider to be the main sources of support for those parents and children The main sources of support ultimately must be within the family. The family is the greatest resource that each member of that family has in an ordinary way. Obviously there are exceptions. It’s very hard for certain members to be supportive for various reasons but usually the family itself has far more resources than it believes it has. Before professionals are called in to the family it is important that
everything is done within the family to make sure that the children are given the attention, support, love and care that they need. If there are difficulties with that then you can involve other extended members of the family or friends or neighbourhood and the community. At a later stage, and if necessary, professionals who may be able to bring in some counselling experience and help or family therapy or complicated behavioural therapy depending on the problems that crop up. But the family remains the main source for the family. Often the wisdom and understanding of the family members for each other is much greater than any professional could get in a few short sessions.
What role can MS societies around the world play in supporting both parents and children? MS societies around the world have a very important role to play in helping people in families where there is MS to live as normal lives as possible and feel they’re supported, understood and empowered as possible. They can do this by not intruding in the family's life but by being there when needed and being able to provide the opportunity for parents to meet each other, for other people with MS to meet each other, for children with parents who have MS to meet each other and to be able to provide the sort of framework where people can get support, understanding, financial information, links to medical profession, advocacy if necessary with benefits agencies, social services, education authorities and things like that. The MS societies have a very large role to play. In fact I would say one of the main reasons for an MS society’s existence is to be there not just for the person with MS but for all those people in the family who have to live with MS, including the person who physically suffers from it. Everyone has MS in a family where somebody physically suffers from it. Telephones can often be a very easy way of people communicating and being listened to. There are a lot of telephone support counselling systems and operations throughout the various MS societies and throughout and indeed in the community for people who feel very isolated, who can’t talk to their parents or who are even being exploited or abused in some way. Unfortunately abuse does occur in MS families as it does in other families sometimes and children can become very vulnerable and can be abused physically. Sometimes a parent can be quite violent to a child or sometimes sexual abuse has occurred as well so telephone helplines can be a lifeline for many children.
One of the early worries particularly thinking of younger children is, if my parent dies who’s going to look after me.
The first thing with this worry is that it’s very unlikely that their parent is going to die. First of all you have to reassure the child that MS is not a death sentence. It doesn’t mean that the parent is certainly going to die. However, there are sometimes situations where a parent is severely disabled and maybe bedridden with MS who is unable to continue living at home and may have to be referred to residential accommodation somewhere or a hospital. These are very frightening times for children. They’re worried that they may be split up as a family or taken into care. They need to be reassured at an early stage that families will not be split up and that everything will be done that’s possible to keep families together. They need to be given support to integrate them with their parent that has MS who may have had to leave home for a short while or on a non-return basis. These things are done. They’re good practice to do and a child can be reassured that he or she won’t be abandoned. There are people there to make sure he or she can continue his or her lives and education and to live in the way that he or she were doing before.
Both parents and children need to be able to talk to about MS; who might it be appropriate to talk with? We all know that there are people that a parent can go and see for counselling, for instance the family doctor, a social worker, the physiotherapist, or a health visitor. But with children there is not such a wide range of people immediately obvious. It is important that schools are made aware that a child has a parent with MS so that teachers are able to give them care and understanding. Teachers should know why a child is sometimes late for school for instance or if there are difficulties at home. Children can sometimes benefit from talking to someone outside the family. It might be a social worker or a doctor but it can be a friend or friend of the family or another family - perhaps a parent of a friend of theirs who they can talk to. On some occasions even a professional person like a child therapist or counsellor working specifically with children who, as part of a team working with the family, can provide support, help and even enable things to change and empower the child.
Which symptoms of MS are particularly difficult for children to handle? There are certain physical symptoms that are very stressful for children to handle. First of all it can be physically demanding on a child if a parent is unable to walk properly and has to use a wheelchair a lot. If a parent can’t feed themselves very well the child maybe brought in to help with that process. This is quite a difficult thing to do, embarrassing and almost a role reversal really with the child becoming the parent and the parent becoming
the child. Other symptoms are having to take a parent to the toilet and be involved in that, or things to do with catheters. often a child can be over involved in these sort of procedures which they should not be involved in at all. These are best done by someone not in the family, or with a nursing background. Children can often be put out by fatigue in a parent and not understand the significance of fatigue. The tiredness, the way that memory problems can sometime occur, and concentration problems. I know that many children get irritated when their parent forgets simple things that they were told and they constantly have to ask again. Or they say they don’t know them or don’t remember being told. This can be very frustrating for every member of the family. Children don’t often understand that this is as much a part of MS as is fatigue, as are frequent visits to the toilet, difficulties passing water, bladder difficulties and bowel difficulties. All these things can provide terrific pressures on children who are not really geared up in most families to deal with these sort of issues. Mental health problems can occur. People with MS can feel depressed more than is normal in the population. This depression can mean a child feels neglected, misunderstood and is not getting attention. This can cause behaviour problems in the child. Of course this can escalate to make the parent more depressed so unfortunately we are always in a system where one thing affects another both ways round. The Father maybe anxious and that will perhaps make the children anxious so that they behave at school in a way which is difficult. This can make the person with MS, the Mother for instance, more depressed. This will make the Father more anxious, and so the cycle can continue both ways round. It is important that people all understand the stresses that are going on within the family and they are given the opportunity to deal with them properly and effectively, either within their own family resources or through friends, neighbours and professional resources. Cognitive problems, as they’re called, in a parent can be very frightening. If a parent isn’t able to think properly or plan ahead properly, or sometimes even has times when they can not really understand a person's point of view or needs, he or she can behave in a way which is self-centred and does not appear to be in the best interest of the child. It can even sometimes be abusive, although abuse where it does occur, can come from the parent without MS as well as from the parent with MS. The former is a different sort of abuse, but in either case it is a lack of putting the child first for one reason or another and making sure that their needs are met.
How important are holidays and short breaks with and without the family for children?
Well it’s very important for all of us in families to have breaks from one another and we all need time with each other. It's about getting the balance right. When MS strikes a family and causes disability or illness in one member then the need for time together is increased but also the need for time apart is increased. People need breaks from each other. That can be the person with MS needing a break from the children just as much as the children or partner needing a break from the person with MS. It is important for what’s called respite to take place, for people to be given holidays away from each other sometimes. The alternative is holidays together where there is special provision for the children and the person with MS. They can all do things themselves and have a good time without having to worry about the person with MS because somebody else is doing that worrying. It is important to have short breaks, parents to have time away together with somebody else looking after the children, just as it is for ordinary couples. It is also important for children to have time away from the parents and from the partner without MS to know that the MS isn’t getting in the way of their children’s development, happiness and maturation. Last updated: Thu, 05 Oct 2006 MSIF http://www.msif.org/en/people_with_ms/ms_and_children.html