Common feelings that parents/carers of disabled children experience

It is common to experience a wide range of emotions to do with your disabled child.  Sometimes parents feel that they are going crazy or are a bad parent for feeling certain things.  Hopefully by reading some of the common feelings below you will see that you are not alone.

This page is regularly updated.  If you wish to add any other feelings please complete the survey.

Anger

Some parents feel angry at the difficulties their child faces and the impact their additional needs have on them and their family. They may feel angry at the diagnosis. Combined with feelings of frustration for fighting for services, lack of support and day-to-day struggles can make life hard.   It can sometimes feel like you are asking 'why me?' and 'why my child?'. 

Survey: 70% of respondents said they felt anger with regards to their child's disability.

Anxiety or Stress

For some people the stress of life can become overwhelming and lead to unhealthy levels of anxiety or worry.  The stresses of caring for someone on top of everyday life can be tiring, particularly if there are battles for services, issues with schooling or health can take over your thinking and reduce time for relaxation and joy in your life.  Cerebra have written an excellent book on Managing Stress for Carers and their Families which can be downloaded here.

Survey: 98% of respondents said they had experienced anxiety, stress or worry in relation to their child's disability or special needs.

Appreciation

This may be an appreciation of the kindness of others or of certain organisations, or attitudes of sections of society. It may well be the appreciation of seeing your child achieve things.  When you have experienced a trauma, or threat of injury or death it can lead to a greater appreciation of life and your role in it.  This can be connected to a phenomenon sometimes referred to as post-traumatic growth.

Creativity, openness and tolerance

For some parents the experience of having a disabled child enables them to put life into perspective.  They may become more tolerant of difference in society, and more creative about how they help their child and what their child needs.  It can encourage an openness with which one sees the world and your influence within it.

Denial

Many families report that they can initially be in denial of their child's difficulties. It can be hard when the future is so uncertain to know what it is that you are having to come to terms with, so denial is an understandable reaction.  It can take time to accept your child's diagnosis but sometimes denial can prevent you from getting the support you need.  In time, by acknowledging and accepting your situation you may feel more able to admit that there are areas in life when you need some help and seek out support.

Survey: 25% of respondents reported feeling denial towards their child's disability.

Depression or feeling down

Many parents experience periods of feeling sad or down and it can be hard to motivate yourself to do things. If you are experiencing a consistent low mood, lack of interest in activities, finding it hard to see any joy in life and your appetite or sleeping habits are affected you may be suffering from depression.  Treatments for depression can include talking therapies and/or medication. It can be helpful to talk this through with your GP.   Ensuring that you take regular exercise, eat well, have good sleeping habits and do not isolate yourself from others can also help lift your mood.

Survey: 73% of respondents said they felt down or depressed with regards to their child's special needs.

Exhaustion

It can be tiring having additional challenges in your life, on top of having to look after a young child.    Some parents find it is the mental exhaustion that is most draining;  worrying about the future, remembering all the appointments that need to be attended and carrying out therapy programmes. For others it may be a physical exhaustion from sleepless nights, medical and lifting demands. It is important that you, as a carer-parent, are in a healthy place so respite, rest, exercise, eating well and ensuring you get a good night sleep where possible are all vital. See wellbeing for further information.
 

Expertise

Many parents of children with special needs gain huge amounts of expertise on their child's condition or difficulties. This sense of becoming an expert can lead to greater confidence and sense of mastery.  These skills can be transferable to support others and sharing your expertise can be useful whether it's via support groups or facebook pages. It can also have a positive impact on other areas of their life, such as in the workplace.

Fear

Parents can become more fearful about the world and their child with special needs, including fears about the future, how well they are looked after at school, whether they may die younger, how the family will cope.  Expressing these fears with someone else, be in a partner, friend, GP or local support group may help to alleviate them, or come to some acceptance that these fears are a part of your sitution but don't have to stop you getting on with life.

Fighting spirit

Many parents feel a call to arms on behalf of their child.  This can be due to the need to fight for services, support or finances.  Whilst this can be a very motivating feeling it is important not to become battle-fatigued as a daily challenge can be quite draining and leave you exhausted.   Allowing yourself time off from the fight is important, as well as recognising which battles are worth the fight and which you need to let pass.  As parents we are an important part of the fight to make the world more inclusive and accessible, however, we can't do this if we are constantly worn down.

Survey:  70% of respondents reported feeling a fighting spirit on behalf of their disabled child.

Grieving

When life doesn't go the way you expected it to, including when your family life is different from how you imagined, there can sometimes be a sense of loss.  To find out that your child is disabled and their life path is not going to be as you hoped there can be a period of  mourning to adapt to the reality of the situation.  This can be a normal and healthy process to go through but sometimes people get stuck at the different stages of grief, such as anger, bargaining or denial. Talking this through with other families in a similar situation, support groups or a professional can help pass between the different stages to reach a sense of acceptance.

Guilt

Many parents can be very harsh on themeslves and feel guilty about their child's disability. Whether it is because their child has a genetic disorder that the parent might blame themelves for carrying or the parent feels they could have done something differently that would have prevented their child's disability.  For other people this can sometimes seem irrational, because it is very unlikely that anything the parent did led to their child's disability.   Unfortunately, feeling guilty can be detrimental to your mental health as it is taking an enormous, and unjustified, amount of responsiblity onto your shoulders.  This can be very draining and gets in the way of the natural process of grieving through to acceptance.  Talking through your feelings may be helpful for you to see that you are not responsible.

Survey:  66% of respondents reported feeling guilty about their child's disability.
 

Helplessness

There can be a sense of helplessness when you are unable to help your child, remove their pain, make the world a more accepting place or fighting for under-resourced services.  Helplessness is when you feel like you have no control in your life and sometimes can lead to giving up and dis-engaging with the world.  Unfortunately, this can make things worse and it is important not to lose your support networks.  Try to remember that you always have some elements of control in your life, even if it's a small step like deciding to have an hour off during the day for some respite, taking a walk or buying something that you would like for dinner, to re-engage with your life and regain a sense of autonomy or purpose.

Survey:  70% of respondents reported feeling helplessness over their child's special needs.

Hope

Despite the initial shock of a diagnosis many parents report a growing sense of hope for the future once an acceptance has been reached.  It may be that people have been given a devastating prognosis early on in life and this is not fully realised, or that the parents come to realise that life is going to be ok, even with their child's disability.  You may be able to see the positives in your family life and any adaptations you have had to make have been easier to accept than one had initially thought.  Your perspective on life can change with time. 

Survey:  55% of respondents reported a feeling of hope in relation to their disabled child.

Joy

Parents can experience joy in their child in all sorts of ways, from achieving the small step that seemed impossible only a few weeks earlier, to the precious cuddle time you have with any child. Many parents with older children often comment that they wished they had spent more time on just enjoying their child when younger, rather than having the pressures of doing therapies with their child.

Survey:  54% of respondent's reported feeling joy with regards to their disabled child.

Pride

Parents can be proud of what their child and they as a family have achieved.   Managing to survive getting a diagnosis and the possibilty of quality of life being impacted or life limited, is a huge achievement.  Furthemore, being faced with sometimes limited support services, financial challenges and pressures on relationships and the whole family means there is so much for a parent to feel pride in.  Combined with progress that their child makes that might have seemed like an impossibility or one can see how much work and effort has gone into the child making those steps, there can be a lot to celebrate.

Survey:  75% of respondents reported feeling pride when they thought of their child with special needs.

Relief

Sometimes a diagnosis can be a relief but for others it can take some time to accept this information and its consequences.
Parents may feel a relief if their instincts about their child were right, particularly if there had been doubts from professionals.    It may take any sense of self-blame away from the parent.

Resilience

When a person goes through a difficult time they can often develop a resilience in order to deal with future challenges.  They can also use this skill to support others.

Survey:  57% of respondents reported an inner strength or resilience with regards to their child's disability.

Sense of purpose

For some parents helping their disabled child reach their full potential can provide a sense of purpose or drive. This may be on an individual level, advocating on behalf of your child, undertaking physiotherapy or speech and languge therapy programmes or ensuring your child attends the most appropriate school.  For others it can take on a wider purpose, campaigning for services, becoming part of local lobbying organisations or setting up charities to meet an unmet need.

Survey:  45% of respondents reported feeling a sense of purpose in relation to their disabled child.
 

Traumatisation

Some parents can feel traumatised by their child's difficulties, whether it's due to a diagnosis of aquired brain injury following a stroke or accident or the growing realisation of the challenges their child may face. The shock of difficult news can be hard to come to terms with and it is important that you allow yourself time to adapt to your new situation.   The support of others, whether it is friends, family, support groups or professionals can give you the space and time to talk through your fears and start to accept your new reality.  Finding organisations that support your child's disability may also help you become more aware about what the future holds and connect to others in a similar situation.

Survey:  22% of respondents reported feeling traumatised in relation to their child's disability.

 


 

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