With thanks to Zoe Southcott - MNCS Accredited for writing this blog
My Parent Has a Brain Injury
All of us are affected emotionally when someone in the family experiences a brain injury. For children, it is particularly difficult to understand what has happened to their loved one and to process their feelings and thoughts around what has happened. Ideally, age-appropriate support would be available but unfortunately, this is not routinely offered to the children of brain-injured parents.
Sometimes children feel they are to blame for their parent’s distress and would benefit greatly from being reassured that:
what has happened to their parent is not their fault and
the resulting problems and stress in the house is also not their fault.
My Parent is Different Now
When someone in the family is brain injured there is a lot of adapting to do. All the family members, including the children, have to learn to cope with the fact that that person may have changed a great deal:
they may look different
find it difficult to talk
have mobility issues
the relationships between family members may change drastically and
they may not be able to engage with the day to day activities that they used to – from the child’s perspective perhaps no one will help with homework anymore or take them to after-school activities.
What Challenges might my Family Face?
All this is very difficult for everyone in the family but the children may face particular challenges. Children may not understand what has happened, they may realise that their parent is poorly but have no concept that they may not recover entirely. They may also believe that they have somehow caused their parent to get ill, or that they are the source of the distress within the family following the injury.
The cognitive and behavioural changes in the brain injured parent may cause attachment wounds in the child that can continue to affect the child into adulthood. Young children especially may be confused and frightened by their parent’s altered way of being. Both parent and child may find it very difficult to find a way to relate to one another, leaving the child insecure and confused as to where and why the care they once experienced has gone.
Children may struggle at school – they might be teased by peers about having a parent who is different, they may no longer be able to have friends back to the house or do the social activities that they used to enjoy. They may well be unable to ask for help or to explain the difficulties they are facing; they may act out in ways that are problematic. Teachers may not understand or even be aware of what is going on at home.
Brain injuries can cause many other challenges like having to relocate or having financial difficulties. Children may not have the emotional resilience to cope well with these things or even understand how far-reaching the changes in their lives actually are. As they get older they may adapt their own life plans to accommodate their changed family – they may struggle with conflicting feelings of care, love, responsibility and resentment and guilt.
Children may be required to become carers in some capacity, if not with household tasks, then emotionally. Small children may feel that their role as the child has been taken from them as a result of the parent suffering a severe brain injury. Parents may no longer celebrate the achievements of the child because they are focused on the progress that the brain injured parent is making instead. This can lead to the child actually being, or at least feeling, neglected.
There will usually be various different support options from the services offered to the brain injured parent and the non-injured parent, but none for the children.
The relationship between the non-injured parent and child may suffer too as the non-injured parent struggles with the various different practical challenges they must now face, as well as the emotional suffering that they are experiencing. This may leave the child very much alone.
Children are at risk of experiencing anxiety, depression, loneliness, fear, anger and embarrassment. Some children may not express their distress leading adults to assume that everything is fine. These children will need an equal amount of support as those that are exhibiting more symptoms of distress.
Why don’t children get any information?
Children very much need information and someone to help them to talk about what is happening, they may need guidance on how to cope.
Sometimes adults in the family, or friends of the family feel that children are going to be upset by a discussion of what has happened and so they decide not to discuss it.
The medical/support/therapeutic staff that are supporting the brain injured adult may not be trained to deal with children and fear that they do not have the skills with which to effectively explain things to the children, so they avoid interacting. It is usual for no staff to check up on the well-being of the child.
There are very few resources for the children of brain injured parents, it is quite likely that they will be offered no support at all.
What do children understand about brain Injury?
Children need information to make sense of what has happened to their parent. They may be very confused and saying ‘your mother is very ill’ is not specific enough. The child may have no concept of what that means or that their parent may never fully recover, they need someone to acknowledge that the home is very different and to explain why.
What should I say to my child?
Children of different age groups process things differently. Of course every child is an individual in a particular context and will experience their situation differently. It is important to provide children with information which is tailored to them as best you can.
The children in the family have had their attachment to their parent disrupted, sometimes severed. They may feel powerless to help, or unable to connect with this new version of their parent. They also will have far less sophisticated means of making any peace with letting go of that which is gone and accepting the new, than an adult would have.
Before talking to your child ask them what they already understand about the injury and about what is happening now, and what the future holds. Find out if they have particular concerns or questions, this can help guide your conversation.
Do explain the injury, and its impact.
Don’t minimise what has happened or act like everything is normal.
Do reassure your child and explain that none of what is happening is their fault, and also that they are not also going to get ill.
Don’t give the impression that the injured person is about to make a full recovery if that isn’t the case.
Do also focus on the injured person’s strengths and the support that is available for you all.
Do invite questions.
Do give hugs.
Children may ask some uncomfortable questions, or have difficult and perhaps ambivalent feelings about their injured parent, it might be upsetting for both of you – but being upset under these circumstances is normal and appropriate, and it is helpful to be able to talk things through.
You may feel unequipped to deal with your children’s emotions or processes but remember your willingness to engage and be present, listen, and be a warm presence in their lives is more important than the actual content of any conversation you may have.
What Else Can Help?
Additionally, try to keep their routines as stable as possible, explain the situation to the school and try to find out about any help you may be eligible for in terms of support or childcare. Your child will best be supported by you if you are well – this means getting rally good at self-care so that you are able to best regulate your own thinking and emotions.
Often the children of brain injured parents grew up in an emotionally neglectful environment. This type of environment can cause us to believe that our thoughts, feelings, and desires are unimportant, which can lead us develop the pattern of discounting our experiences and our feelings. We can continue to find it difficult to let people in, and to worry about the other person’s perception of us.
How to Recover:
1. Start noticing and tracking your feelings: Print out feelings charts and track them each day. This is not something you have to do perfectly but it’s is important that you begin to listen to and acknowledge your own experience.
2. Notice your needs and wants: What are the things you need physically to survive? What are some things you need emotionally? do you notice any patterns as to when they arise?
3. Self-Care/loving the self: Self-care is about learning to love and nurture a ourselves. Are there things you wished your parents had done for you? Let’s make time to do those things for ourselves a great way to get great at developing an attitude of self-love is practicing meta/loving kindness meditation.
4. Accept love from others: It can be easier to stay isolated when that is what we are used to, but it is important that we learn to offer ourselves those things we weren’t able to access as children, so give yourself a break! and remember:
5. Keep yourself safe: set healthy boundaries and learn to effectively identify and ask for what it is you want and need. Take it as slowly as you need to, and stay safe.
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