Managing Difference For Cystic Fibrosis Child

U.S. Army photo by Spc. Nathan Thome, 4th Inf. Div. PAO) (Photo Credit: Spc. Nathan Thome (4th ID)

This chapter is about how to build up your child’s self-esteem and confidence to help them cope as they become aware of the differences between themselves and other children who don’t have a physical illness. While you will learn to manage this from the time of your child’s diagnosis, your child’s awareness will gradually develop depending on their age and developmental stage. A baby or very young child will be completely unaware of this, and parents often comment that seeing how their child has the normal drive to develop and want to do things helps them as well, as they see how resilient their child can be, even in the face of illness.

As cystic fibrosis children get older, they do gradually become aware of any differences and begin to ask questions. For example, they may question why they have to do something such as take regular medication which their brother, sister or friend from school does not have to do. This can then lead on to a sense of unfairness or hardship, particularly if it means they can’t do things their peers are doing or if they are struggling with a treatment regime. This, in turn, leads on to further questions about why they are different, and this search for a reason can lead to some difficulties with accepting why they are affected – and sometimes anger as well.

As they get older, children also tend increasingly to value the opinions of their peers. Most children want to blend in with others of their age group, to be able to do the same things as their peers and to fit in with their interests. (See Chapter 10 on adolescence and managing transition.)

This is all part of making sense of their condition, in keeping with their developmental stage or age. While this is a normal progression it can be hard to manage, as we discussed in the earlier chapter on children’s understanding of illness.

A child with a long-term illness can sometimes look different from other children of a similar age as a consequence of their condition or treatment. Some of those differences will be very visible to others, such as conditions that affect the skin, or hair loss due to chemotherapy. Long-term illnesses often affect growth and can make children appear younger or smaller than their peers, and size and stature can sometimes be linked to status in childhood, so this can be a big problem for children. Other differences will be less obvious to others outside the family – for example, the need to take medication at home every day.

Case Study – Anna (5 years old)

Anna has severe eczema, which particularly affects her hands, and this is mainly treated using emollients and steroids when necessary. It is generally well controlled but can flare up from time to time. She is generally speaking an easy-going, happy child.

Although she took a while to settle into nursery, she was very happy going there and made one good friend called Laura, who moved up to reception class with her. Anna initially settled well in school but, after a few weeks, began to appear more subdued and less carefree and was occasionally tearful before going in the mornings. One day when her mother suggested Laura could come round to play, Anna got very upset and said Laura wasn’t her friend any more. Laura had started to play with a new girl, Ellie, who had joined the new school with them. After a longer talk with Anna, it transpired that Laura now chose Ellie as her partner when they had to line up in pairs, because Ellie had told Laura that Anna’s eczema was catching and she didn’t want ‘scabby’ hands like Anna.

Children who look different do have to deal with comments like these, as well as the misunderstandings that underlie some of these differences. For example, once Ellie understood that Anna’s eczema was not catching, and that she could in fact hold her hand safely, she was much more accepting of her.

Perhaps surprisingly, there is not always a strong link between the severity of a child’s condition and the impact that it has on them psychologically. Much of how a child feels about their appearance is related to factors other than the condition itself, such as personality, resilience, confidence and support, etc. Some children who have very marked and visible differences can have the inner confidence to manage social situations well, whereas other children with only very minor noticeable differences will feel self-conscious and ashamed, which can make it hard for them to manage similar situations.

Dealing with Other People’s Reactions to Your Child

If your child looks different, you will have to manage a whole range of reactions from other people, and your child will also eventually have to manage these reactions themselves. If you can develop confidence in managing them yourself, this will help your child who will pick up on your style and skills and learn from the way you approach these situations. This is not easy – so hopefully this chapter will help you feel more confident about how to manage these situations.

We live in a society that places a very high value on physical perfection and this can be difficult for anyone whose appearance does not conform to that idealised image. In addition, most of the images of ‘perfection’ that we are bombarded with in the media have been manipulated so that even they are not accurate representations. In this context, it can be very difficult to ensure that your child maintains a positive image of themselves as they grow up and develops a high level of self-confidence and self-esteem. We know that children who appear different will experience some name-calling and social rejection, and helping them develop a positive attitude from the start can help them deal with these situations and improve their sense of control of them.

Case Study – Olivia (newborn)

Simon and Debbie are expecting their first child together and are excited at the prospect of becoming parents. At a routine scan, they find out that their child is going to be born with a cleft lip and palate. This is a huge shock for them, because they have both been healthy and taken the usual precautions while pregnant.

After the initial upset and adjustment, they find out a lot more about the condition during the rest of the pregnancy from the antenatal team and the Cleft Lip and Palate Association (CLAPA) and so are better prepared when their daughter Olivia is born. Although they do still find the initial time with their daughter very upsetting, they both soon develop a very close bond with her and feel fiercely protective towards her once they have to start answering friends’ and relatives’ questions. Fortunately, they are given lots of advice on how to manage feeding and answer questions about the cleft from the specialist nurses and midwives. When their daughter has the corrective surgery she needs to repair her cleft, the surgery goes well, and they are delighted with the results.

In order to help your child build confidence, you need to find a way to respond to other people’s questions or comments. But in order to do that, you need to have had the opportunity to resolve some of your own feelings related to your child’s appearance. This will be a gradual process and your own feelings are likely to vary but, as the above example shows, getting information and support right from the beginning can help with adjusting to your child’s appearance.

However, in other situations, the child’s condition will not be known before birth, and so there is no opportunity to do any preparation. The adjustment has to wait until after the child is born. Many parents are surprised that they instinctively feel a need to protect their child, and that strong protective instinct facilitates the strength needed to take on this role. However, for other parents, it can be very difficult to form a bond with a child who does not look as expected, and this can be an extremely distressing time.

As a new parent, you may need time to adapt to your child’s appearance and support to deal with the emotional impact of this, in order then to be able to face the rest of the world. It can be extremely hard to manage introducing the child to family and friends when it is still upsetting for you. It is normal to feel overwhelmed by powerful emotions at times, particularly when you feel you need to protect your child from upset. It can be hard to acknowledge that you need help, as it may make you feel that you are admitting to not being good enough or not caring enough for your child. The opposite is true – by recognising that you need support, you will be in a much better position to help your child. You may find that just talking about these feelings to someone close to you is enough, but you can also speak to a member of your child’s healthcare team, or your GP. There may be a helpline or resources via the patient support group for your child’s condition as well.

Many parents also have to manage complicated emotions related to their own experiences of visible difference – they might have memories of being called names or being bullied at school, or even memories of taunting another child or bullying them. In addition, parents tend to start thinking about longer-term consequences immediately; for example, what will it be like when their child starts school? Will anyone ever want to go out with them? How will they ever get employed? This can build the current difficulty up into one that is much harder to tackle because it has become a huge hurdle to overcome, rather than focusing on the immediate issue the child has to manage. Children are protected from some of this because they are not able to think about the long-term difficulties in the same way, so are more able to take it one step at a time. Just knowing that your child is able to take a more short-term view can help reduce your own tendency to build the problem up in your mind.

By using the following strategies, you can help your child build their confidence by dealing with any issues as they arise and help them feel empowered to overcome difficulties when necessary.

Managing the Reactions of Others

There is a whole spectrum of responses to differences in appearance that your child may experience, ranging from ‘banter’ to outright social exclusion. It is sometimes difficult to know when to react and when to ignore such behaviour. There is no one ‘right’ way of responding to any given situation, but it can be helpful to consider various alternative approaches to take, in order to choose the most useful approach from a ‘toolkit’ of options in an individual situation.

Dealing with inquisitiveness or staring

Many people will take a second look or even stare at a person who looks different when they come across them by chance. Sometimes the underlying reason for this is curiosity, and there is no malicious intent behind the look. They are simply trying to make sense of what they have seen. But it is impossible for the child and parent on the receiving end to know what the intention is behind the look and, at the very least, it is confirmation that your child is different in some way.

Young children are very inquisitive by nature and when they come across something they have not experienced before, they naturally want to understand what it is. They have not yet learned any sense of social restraint, so they will ask very directly or comment spontaneously and this can be done quite innocently without intending to cause any hurt. For example, they may say something like, ‘Why is your skin red and bumpy?’ or ‘Ugh . . . why do you have that tube in your nose?’

In most situations, it is best to have a tried and tested response that includes first a simple explanation, and then something to reassure the young child. For example, you may say, ‘He has a skin condition called eczema, but don’t worry, it’s not catching . . .’ or ‘She has an illness called cancer and the treatment meant she couldn’t eat for a while but now she is getting better.’ It can then help to redirect the conversation on to something completely different to distract the child and to continue in a more normal conversation: ‘I like your trainers – I really like that colour – where did you get them from?’

It can also help to use humour to try and take the tension out of the situation – but it can be hard to think of the right comment at the time you need it! It is hard to be prescriptive about this – it has to fit in with the individual’s style and context and can be thought of as part of the ‘toolkit’ you or your child can draw on in these circumstances.

When dealing with older children or adults in these situations, it is worth remembering that sometimes people feel awkward or embarrassed by their own reactions to someone who appears different. In these situations, it is possible to overcome this by taking a lead in the conversation and bringing up another topic that feels more comfortable for both parties. This helps defuse any embarrassment but also helps the receiver see that appearances can be deceptive and that you and your child are able to manage social situations.

However, it can also be important to go one step further and help them learn that their comments might upset or embarrass another child. For example, you can say, ‘She has a tube to take food into her tummy because she can’t eat at the moment. She doesn’t like it when people say things about it because it hurts her feelings.’

This can also be a helpful approach to take with adults who are looking inquisitive but don’t actually say anything. For example, you can say, ‘You seem to be wondering what is wrong with her. She had to have surgery on her face but she’s recovering now. Please don’t stare at her because it makes her feel self-conscious.’

Despite this, there is no doubt that there will be times when either a child or their parent feels worn down by being the one who has to take a positive approach, and especially if they are feeling sensitive or less resourceful for other reasons. We are still a very ‘beauty’ dominated society and it is hard growing up in that sort or culture when we don’t fit that ‘norm’. It is normal to lose your temper sometimes when someone is staring or making a comment – they are certainly likely to remember it and hopefully think twice next time they are faced with a similar situation!

Dealing with bullying

All schools have to have an anti-bullying policy and also go beyond this to promote methods of preventing a bullying culture from developing. In the past, the focus has often been on taking an individual approach to resolving difficulties between the ‘bully’ and the ‘victim’. However, it has been found to be much more successful to take a whole-class approach, developing a shared value of respect for all, and creating a culture of high standards that also encourages all children to challenge name-calling or bullying that they witness. If this approach is taken, then it is not just children who look different who should benefit: it is all children. This approach can help counterbalance any power imbalance, which can make it hard for individual children to stand up for themselves in a situation when they are faced with a child who is older or more popular than they are.

Case Study – Daniel (9 years old)

Daniel is quite small for his age and has had to miss quite a lot of school for medical treatment. He returns to school after a week’s absence and one of the other boys in the year above asks if he has been skiving. When Dan says he has been unwell, the older boy then tells some of the others to keep away from Dan because ‘it’s catching’. They play a game throughout break that involves avoiding Dan as he runs around the playground, as if he is contaminated. Dan is upset but plays along.

At lunchtime, when Dan sits down, the other boy makes a big show of avoiding sitting anywhere near him and encourages his friends to do the same. Another boy, who is one of the taller and ‘cooler’ boys, bravely decides to take them on, and sits next to Dan. Dan is pleased and the other boy talks to him normally. After lunch when they all go out to play, the other boy tells the playground supervisor what had been happening and she tells them all to play together. They are all soon running around together.

Children with a long-term illness may also end up missing school more frequently than healthy children, because of ill health or hospital appointments and treatments. Missing school means not only do they have work to catch up on, but they will also have missed out on social opportunities with their peer group. It can be very daunting for a child who has missed school to return, and they may be reluctant to do so. They often face questions about why they were off and may find that friendship groups have moved on. It can be helpful to think about this with your child when they return, so that they have an explanation ready. (There are also more strategies for helping your child in this situation in Chapter 8 about school and education.)

If you are concerned your child is being bullied, it is not always easy to find out exactly what is happening – your child may be reluctant to tell you, or they may find it too painful to admit it to you. It is important to talk to their teacher, who needs to know your concerns in order to deal with it effectively. Any bullying should be dealt with in the early stages, and in a way that doesn’t mean the victim ends up feeling worse; otherwise it will eat away at your child’s self-confidence. If the school has successfully developed a culture of inclusion and valuing difference, then these difficulties can be addressed as part of that agenda, so that the child doing the bullying is not seen as the ‘stronger’ one, but the one whose behaviour has to change.

In some situations, it can also be difficult for a child who looks ‘normal’ but who can’t participate in ‘normal’ activities because of the restrictions due to their physical illness. For example, if a child has a complex treatment regime, it is much harder for them to go on sleepovers or trips away with friends or school. These types of ‘invisible’ differences can make it hard precisely because the child’s expectations are that they are ‘normal’, and they don’t want to have to make allowances for their condition. Occasionally, there will also be situations where their illness gets challenged or someone questions why they need additional support or special treatment.

Sharing Information and Managing Transition to Secondary School

Case Study – Tariq (10 years old)

Tariq was treated for a cancerous tumour when he was seven years old. He had surgery, followed by chemotherapy and radiotherapy and has now been cancer-free for nearly four years. During this time, he has been well supported by his small primary school, where he is well known, and he has mostly enjoyed his time at school. Despite having to miss quite a lot of school, he settled back in well, is confident socially and has caught up with the education he missed. He is small for his age and is being treated with a growth hormone replacement. He is due to transition to secondary school in September. The secondary school most people from his primary school go to is very large but nearby, and has a very good reputation for achievement.

Having been to visit the new school, Tariq is now worried about how he will fit in since he will be one of the youngest and probably the smallest. However, he is clear he doesn’t want everyone to know he has had cancer. His parents are also unsure about what to tell his new school about his previous treatment.

There is a balance between maintaining privacy or confidentiality and letting other people know about your child’s condition. There are some situations when it is important for others to know, in order to ensure that your child is safe and cared for properly. It is also a way of ensuring that your child gets any additional treatment or support they need at school. However, once the information becomes widely known, it can be hard to control how it is used, and while most children and parents would treat it respectfully, others can use it in a way that will cause your child to be upset.

This is especially the case for some conditions, such as HIV infection, which still carry considerable stigma, and if this becomes well known it can be very difficult for a child to manage the consequences. In these circumstances, it is usually best to wait until the child has had the chance to have some preparation themselves, and can understand the implications of disclosure before encouraging them to share information. Even when children are aware of their diagnosis, it is often helpful to say something like, ‘Although you had cancer, that isn’t the most important thing about you. The most important things are what make you the boy/girl you are. Let’s think about all the great things that make you, you.’

In Tariq’s case, it would be very important for his parents to let the new school know about his previous health problems and to let them know he is still being monitored for any late effects of his treatment and will need to go to some hospital appointments. It would also be helpful for the Special Educational Needs Co-ordinator (SENCO) at the school to know about the possible impact on his growth, so that he/she understands that this may be an issue for Tariq. There are some very helpful leaflets written for teachers to help them understand the impact of cancer treatment on children, which can provide some background information (see Resources section at the end of the book). However, there is not necessarily a need for all the other children to know about Tariq’s condition, so he can decide for himself whether or not he lets his new friends know about his treatment.

Dealing with Cyberbullying

The development of cyberbullying has caused a huge amount of concern, partly because it is so much harder for parents to know what is happening, and partly because, by its very nature, it is so much more ‘public’ than bullying face-to-face. Responses can easily be seen by hundreds or even thousands of other young people, so the shame felt by the ‘victim’ is that much greater. Hiding behind the anonymity of online postings also means that some people feel much more able to say shocking things – things they would not dare to say face-to-face.

Case Study – Carol (15 years old)

Carol is fifteen and has always been self-conscious because of a scar that she has on her chest as a result of cardiac surgery. A group of her friends at school are sharing selfies of themselves in low-cut tops, showing off their cleavage. They are daring each other to send the images to the boys in their class to see how many ‘likes’ they get. Carol posts a picture of herself in which a corner of her scar is visible but which she feels looks pretty good. Only a few of her friends ‘like’ her picture and she feels mortified. She feels even worse when a ‘friend’ comments on the picture saying he would not want to touch her.

It is really important for young people to know about the dangers of cyberbullying and sharing information online. If this is done from an early age when parents have some control over access to online material, then hopefully children grow up with some awareness of these issues.

However, it is much harder with older children to manage their time online. They can become preoccupied with what other people are thinking and doing in a way that is really unhelpful and undermines their self-confidence. However, it is hard to protect them from this when it is what everyone else is doing.

It can be helpful to set some limits: for example, by limiting online access after a certain time in the evening and during shared times, such as while eating or doing a family activity. It is also important to make sure your child knows they should not make themselves vulnerable to such bullying by revealing too much information about themselves to people they don’t know well. This includes revealing publicly identifiable information about or images of themselves that could be misused.

If you find out that something upsetting or offensive has been posted about your child, you should make sure they keep the evidence and then report this to their service provider. It is worth encouraging your child to look at the resources on websites such as bullying.co.uk or kidscape.org that help support them to be safe online, but also encourage them to seek help when necessary (see Resources section at the end of the book).

Ways of Building Your Child’s Self-esteem

As well as managing any difficult situations that arise, it is also worth taking a proactive approach to help build your child’s self-esteem. If they feel good about themselves and recognise their own skills and strengths, then this will be a protective factor for the times when they face challenges. It is easiest to do this by encouraging them to develop skills in an area that interests them and where there is potential for them to participate and enjoy themselves.

Make sure your child grows up with a healthy cynicism for the ‘beauty myth’ that is in popular culture. For example, point out when you see celebrities with ‘perfect’ skin that this is an airbrushed image, not a real image. Make them aware that it is not possible for everyone to be super skinny and that many of the people who are that thin are actually very unhealthy. However, don’t avoid talking about appearance completely. It is still important for them to think about their appearance, and to make an effort to look good, e.g., by choosing to wear flattering colours. Make sure to pay them a compliment when they do look good.

All of us have to learn to identify and make the most of our strengths, and the same principle should apply to children with a long-term illness. Help your child by noticing when they do something well and support them in making progress with it – remember to start from where they are already and build on small achievable steps. Make goals based on them as individuals rather than necessarily trying to win or be the best at something. Notice when they do something well and praise them for the effort they put in, rather than just the result. It can be a great achievement to participate in an event – they don’t have to win for it to be a success. Tell other people about what they are doing well – for example, their teacher or other members of the family – so that their progress is recognised and celebrated. Try not to be negative or criticise when things go wrong – it is a helpful life skill to accept you have to make mistakes in order to learn from them! Instead, help them to problem solve by taking the role of a ‘coach’ and help them to think through what they could do differently next time. It is tempting as a parent to point out what went wrong and tell them what they should do. Instead of doing this, try and get them to tell you what happened and ask open questions such as:

•    How do you think that went?

•    What did you feel went well?

•    What sort of things that you said or did do you now wish you had done differently?

•    What would help you next time to do it that way?

•    What would you like me to do to help with that?

By stepping back yourself and encouraging your child to think through the steps rather than just giving them the answers, this will help them to adopt a problem-solving approach and help them to feel confident to overcome minor setbacks.

Developing Confidence in Social Situations

Helping your child to become more assertive and take some control in social situations is a really useful skill to learn. This is something that many children and adults who lack confidence actively avoid, but it is only by practising and overcoming some of these fears that they can develop the skills needed to manage social situations. Often, parents find their own self-confidence improves when they see their child acting assertively with friends. Sometimes, supporting your child can benefit you. Withdrawing eats away at confidence, and especially during childhood when other children and young people are gradually getting better at developing these skills.

Case Study – Rylan (12 years old)

Rylan was born with a heart defect. Throughout his childhood, he has had several operations and admissions to hospital. He takes daily medications and will continue to have regular check-ups. He is small for his age and, because he has missed quite a lot of school, he doesn’t always get good marks and has to attend catch-up groups at lunchtime. He lives with his mum, Janine.

Janine is not a confident person and doesn’t have a lot of friends. She says that Rylan is like her in that he is shy. Rylan is getting worried that he doesn’t have any friends and because he goes to hospital a lot, he thinks the other kids won’t like him very much. Rylan is starting not to want to attend school and never goes out after he has come home in the evening. Janine is OK with that as she says they like each other’s company. It is important, though, that Rylan is listened to, as he is worried about friendships and school is becoming a place he is concerned about. It would now be helpful for Janine and Rylan to develop a plan to help him to continue to attend school rather than withdrawing to the comfort zone of home.

Rylan and Janine undertake an activity on paper, drawing out where Rylan is now, where he wants to get to and what is in the way of getting there. Rylan says he wants to picture it as standing on one side of the river with all the kids playing together on the other side; he wants to get to the other side and join in. Rylan and his mum work out that he needs to cross the river on stepping stones. He decides that each stepping stone earns him 100 points and when he gets to 500 points he is on the other side.

They work out what he needs to do to earn his first 100 points and, as can be seen in the diagram, they break each step down into a small manageable task.

Every day his mum asks Rylan how he is doing and supports him by awarding the 100 points when he has achieved his stepping stone. Doing this together means that she is involved and also benefitting from his increased self-confidence.

Key Points

•    Actively foster a culture of valuing difference and challenging society’s unrealistic perfectionist ideals in the family.

•    Develop a range of strategies for the spectrum of comments your child might receive about their appearance or condition – talk about what works/what doesn’t.

•    If you find this very upsetting, it can help to get support for yourself in order to be able to help your child.

•    Take a proactive approach with school – stay one step ahead and control the flow of information.

•    Help your child develop an area of strength they can enjoy and feel proud about.

•    Help your child to stay safe online from an early age.

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