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Building coping skills – CCMV

Building coping skills

Coping Toolbox

 

You might find after the diagnosis that you need more than your usual ways of coping. There is no best or right way of coping, but having a few different strategies may help you feel a greater sense of control and confidence. A coping toolbox is a set of strategies or ‘tools’ you can use to help you cope. Each persons toolbox will look different, but it’s useful to consider several strategies or tools for coping.

 

Gathering information

There is a lot of information to take in – and well-meaning family and friends may give you even more. Too much information may leave you confused about what to do. Instead, you may need information relevant to your situation or a way of dealing with the information you already have.

  • Get organised: start a filing system for all your test results, information and records.
  • Keep a diary: This may help you to kee track of appointments and highlight where information may be missing. This will also be a useful, accurate record in the future (especially if you are seeing different professionals in different locations).
  • Involve other people: Ask people you trust to help gather and make sense of new information.
  • Consider different sources of information: Look at websites, books and different organisations. Take care with information from the internet as some of it is unregulated and of poor quality.
  • Ask questions: If you are unsure or confused about certain information, it can help to talk to your doctor. Write down your questions beforehand so you remember what to ask when you see your health care team.
  • Take a close family member or friend to consultations: They can take notes to help you remember the details. If you are comfortable with it they can also ask questions.
  • Find support: Some people join a support group as it gives them the opportunity to talk to other people in a similar situation. If you think a support group is not for you, there are other ways to connect with people.

 

Making decisions

After receiving a congenital CMV diagnosis, you will probably need to make several decisions. These could include the choice of treatment and early intervention therapy and how to involve your family and friends.

  • Take your time – There is time to consider your treatment choices. Generally, people make better decisions – and have fewer regrets later – if they take time to gather information and think about the possible consequences.
  • Get expert advice – Ask your health care professionals to explain the treatment options and the benefits and side effects of each. Social workers can also give you details about support services.
  • Write it down – Organising your thoughts on paper can be easier than trying to do it in your head. Write down the aims of the treatment/therapy available.
  • Talk it over – Discuss the options with those close to you.
  • Expect to experience doubts – Being unsure does not mean you have taken the wrong path. Reassure yourself that you made the best decision you could with the information you had at the time. Asking yourself, ‘Did I make the right decision?’ is rarely useful. Also, decisions are not always final.
  • Get a second opinion – Asking another specialist what they think can be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommendations or reassure you that you have explored all of the options. Specialists are used to people doing this. Your doctor can refer you to another specialist and send results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. Alternatively, you may decide you would prefer to be treated by the doctor who provided the second opinion.

 

Looking after yourself

A CMV diagnosis for your child can cause physical and emotional strain. Some days you may feel better than others. Looking after yourself can enhance your well-being and reduce stress during this time.

  • Eat well: Eating well gives your body better fuel to help it cope with stress.
  • Be active: Physical activity can lift mood, lower blood pressure, improve sleep and reduce stress. It is also an important way to manage fatigue – helping you to feel more energetic and less tired. Even a short daily walk can help.
  • Make time for yourself: Even though life may be very busy, it is important to make time each day just for relaxation and enjoyment. Think about things you do (or have done in the past) that help you to relax and feel good.
  • Sort out issues: Dealing with other sources of stress in your life such as financial problems, work-related issues, relationship concerns and family stresses may help you cope better going forward.
  • Stay connected: Keeping in touch with the world through work, hobbies or time spent with family and friends may help you see a life outside of doctor appointments, treatment and early intervention therapy and provide a break from your worries.
  • Tap into spiritual beliefs: Some people find meaning and comfort from their faith and spiritual practices. Others may experience spirituality more generally. A diagnosis may challenge the beliefs of some people and it may help to talk to a spiritual leader or pastoral care worker about your feelings.
  • Recognise signs of stress and anxiety: In times of stress, your body releases adrenaline, your heart beats faster, your blood pressure goes up, your breathing is shallow and fast, your hands get sweaty, and your mouth gets dry. These natural responses help people deal with a crisis. For most people, these feelings settle, but for others they are ongoing.

 

Feelings you may experience

Shock and disbelief – it may take time to accept that your baby has a disability and some people may never accept the diagnosis.

Fear – it’s frightening to hear your baby could have or has a disability. Most people cope better when they learn more about the diagnosis and treatment options.

Distress – the diagnosis may cause you and your family members to experience high levels of emotional distress.

Sadness – feeling sad after your child has been diagnosed with congenital cytomegalovirus is common. If you feel continually sad or down for two or more weeks and are not enjoying or interested in your usual activities, or are unmotivated, talk to your doctor – you may be experiencing depression.

Anxiety – it’s natural to worry about what a congenital CMV diagnosis will mean for your baby in the future, and the impact the diagnosis will have on your family, work and other responsibilities, but looking far ahead may be unhelpful.

Anger – you may feel angry with health care professionals, your God, or even yourself.

Guilt and blame – it is common to ask ‘why my child?’

Loneliness – you might feel lonely and isolated if your family and friends have trouble understanding your child’s diagnosis or if you are too busy with appointments etc to be able to work or socialise with others and enjoy your usual activities.

Loss of control – being told your baby has congenital CMV can be overwhelming and make you feel as though you are losing control of your life.

 

Does thinking positively help?

A common belief is that the most important thing in coping with a serious diagnosis is staying positive. While it can help to be hopeful, this doesn’t mean denying the reality that your baby has been given a diagnosis that is serious and frightening. Trying to put on a brave face all the time drains energy, and generally doesn’t work well because the negative thoughts just keep coming back. Pressure to be positive all the time can lead to people being afraid to discuss fears and feelings, which can make problems worse.

Try to be realistic about what is happening and talk to someone about your fears and concerns so you can better deal with them. Explaining how you feel to those around you may also help you get the support you need.

 

Using complimentary therapies

Complimentary therapies are widely used in Australia and are often used alongside conventional therapy such as physiotherapy, occupational therapy, audio-verbal therapy and speech therapy. They may offer physical, emotional and spiritual support and improve quality of life.

Complimentary therapies are different to alternative therapies. Alternative therapies are used in place of conventional therapy, but many alternative therapies have not been shown to be scientifically effective.

Complimentary therapies focus on a mind-body connection. These techniques are based on the belief that thoughts and feelings can affect physical and mental well-being. When your emotions or mental state are under pressure, your physical body can be affected. Similarly, physical symptoms can have a negative impact on your mood and mental well-being. Below are some types of mind-body complementary therapies.

 

Ways to share how you’re feeling

Your own physical health and emotions can fluctuate at times as looking after a child with special needs can sometimes be hard. Sometimes it’s hard to let your friends and family know how you’re feeling, and they may find it hard to ask.

If you’re having trouble talking to others about how you’re coping you can share the experience in the following ways:

  • Keep a journal or blog – some people keep two journals, one private and one to share with others.
  • Make music, draw, paint or create craft.

 

It’s ok to say no

Sometimes you will switch between wanting to talk about what’s going on and wanting to avoid difficult thoughts and feelings. It is ok to say no – whether it is about discussing your personal concerns or in response to an offer of help.

 

Counselling

Through discussions with a counsellor or psychologist, you can identify problems and explore ways of resolving unhelpful thoughts and feelings that affect your health and day-to-day life. Counselling allows you to express your emotion in a safe and supportive environment, and to learn new coping skills.

Dealing with unhelpful thoughts

Some people may find themselves going over and over the same distressing thoughts about the past or future. Ignoring such thoughts or trying to distract yourself may work at first, but they often return once you are no longer distracted – for example, during the night or early in the morning.

  • Identify where the thoughts come from – Ask yourself if your thoughts are the result of an underlying belief, such as ‘The world should be a fair and just place.’ Or perhaps you have a tendency to attribute personal meaning to everything that is happening, even to events that are beyond your control. For example, if you arrive at a doctors appointment or therapy centre and can’t find a car park you think, ‘Nothing ever goes right.’
  • Imagine what you would say to others – Think of someone you love and imagine what you might say to them if they felt the same way.
  • Check your thoughts – Ask yourself if you are jumping to conclusions or exaggerating the negatives. If so, is there something you can do to change the situation or improve it?
  • Write down your thoughts – This helps slow down your thinking and makes it easier to focus. It may also help you determine if a thought is based on facts, realistic or helpful.
  • Acknowledge life events – Check if you are focusing on the difficult things and ignoring the little achievements or happy events that may also be occuring. Sometimes we notice the bad things that happen and don’t notice the good. Writing down three good things that have happened to you each day may help. They don’t have to be major events – just the everyday things that often go unrecognised.
  • Practise letting your thoughts come and go – Thoughts are fleeting. Some we notice and many we don’t. Practise letting your thoughts come and go without getting caught up in them.
  • Coach yourself – For thoughts to be helpful, they need to be balanced and believable. Use encouraging thoughts to talk yourself through difficulties, rather than undermining yourself. Learn to be kind to yourself. Counsellors can teach you these techniques.
  • Seek help – There are a range of professionals who help people manage how they’re feeling. Check if one of these is available through the therapy centre your child attends or ask your GP for a referral. Medicare provides rebates for mental health services provided by a psychologist – talk to your GP about this.

 

Types of health professionals you may see

Mental health nurse: a registered nurse who has completed further study in mental health nursing. Role includes assessing people, giving medicines and assisting in behaviour modification programs.

Counsellor: A counsellor’s education may range from a vocational certificate in counselling through to university-level studies in psychology or social work. There is no qualification standard they have to meet. Counsellors listen to what’s going on and offer strategies for dealing with issues.

Social worker: A social worker must complete a four-year undergraduate or two-year masters degree. They provide emotional support, offer practical and financial assistance and help people find support services.

Psychologist: A registered psychologist must complete four years of psychology at undergraduate level, followed by either postgraduate studies in psychology or two years of supervised clinical practice. Psychologists who specialise in counselling use their understanding of the mind to guide clients through issues with how they think, feel and learn. They often develop expertise in particular approaches.

Psychiatrist: A psychiatrist is a trained medical doctor who specialises in the diagnosis, treatment and prevention of mental illness. As well as discussing issues with patients, a a psychiatrist may prescribe medicines to help manage a range of emotional conditions. You need a referral from your GP to see a psychiatrist.

 

Other people’s reactions

The reactions from your family and friends will vary. These will depend on many factors, including their previous experience. People often don’t know what to say. They may appear too positive or make light of your situation, or they may avoid or withdraw from you. Friends stay away for different reasons. Sometimes it may be because they are not able to cope with what you’re going through.

After the initial shock family and friends are often supportive.

 

How to handle other people’s reactions
  • Make time to talk. Don’t wait for the right time – it may never come.
  • Your family and friends will find it easier to be told what you need rather than having to guess. Make some specific suggestions. For example, you may like someone to attend appointments with you, help with child minding if you have other children or provide some meals. Don’t fall into the trap of thinking, ‘If they really cared, they would know what I need.’ They’re not mind readers. Be honest about what you are thinking and feeling, even if it is upsetting.
  • Focus on understanding each other as this is more important than trying to solve the problem.
  • Really listen to what the other person has to say. Put aside your own thoughts and judgements and try to understand where they are coming from.
  • Talk openly about what is happening and what you need. If you think not knowing what to say is keeping a friend from visiting, call them to ease the way. You may find that talking openly helps everyone.
  • Give your family and friends time to adjust. They may need as much information, support and advice as you do. They might be fearful and frustrated at their inability to do anything about your child’s diagnosis.
  • The reactions of others may make you feel hurt, angry or frustrated. Try not to take their reactions as a sign that they don’t care.

 

Talking to your children

Parents and other adults can feel overcome by their own anxiety and fears, and their first impulse may be to protect children from feeling these same strong emotions. Most children sense that something is wrong even if they don’t know what it is. When they are not told what is going on, children may imagine the worst. They may also find out from someone else, and this may leave them feeling angry and confused.

How to tell children

  • Start with questions to check what your children know. This gives you the opportunity to clear up any misunderstandings.
  • Use language that children will understand. Younger children need simpler explanations while teenagers and young adults might ask for more details.
  • Answer their questions simply and honestly.
  • Try not to overload kids with too much information.
  • Explain that having a disability is not their fault and is not contagious.
  • Leave kids with feelings of hope that even though you or they may be upset now, there will be better times.
  • Tell other people close to your children (grandparents, friends and school teachers) about the diagnosis and what you plan to tell your children. If you all say similar things, your kids will hear a consistent message.

How to help children adjust

  • Trying to always be upbeat in front of your children can be exhausting, so tell children how you’re feeling. They may be relieved to know your mood is not because of something they’ve done.
  • Listen and give children a chance to discuss how they’re feeling.
  • Continue the children’s usual routine as much as possible. They feel safer with a regular routine. Talk about their activities, and let them know that it’s still ok to have fun.
  • Explain any changes that need to be made to the family’s lifestyle, and negotiate where possible.
  • Reassure them of your love and continue to do things together.
  • Tell them they will be looked after throughout their siblings treatment or ongoing therapy, even if you can’t always do it yourself.
  • Expect that children will  react in different ways.
  • Suggest that teenagers talk to a trusted adult or a counsellor about how they’re feeling as they may find it hard to share this with you.
  • Talk to your GP or a counsellor if the behaviour of your child or teenager changes significantly.
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