Disability and the family

Introduction

Following are a number of well documented thoughts associated with having a disabled child.

Diagnosis

Diagnosis of a disability, for example a visual impairment, is usually a shock for parents. This applies even if other children in the family are disabled or family members have had their suspicions for some time that something is wrong.

Each member of the family often feels different emotions or even the same emotion to a different degree. Importantly, each should do their best to fully accept the situation in their own way.

Passing on the news

At the point of diagnosis, the way it is handled by the person passing on the information is extremely important. To help everyone work towards full acceptance a lot of support may be needed.

The emotions felt will depend on the emotional intensity and its pattern. This will vary according to individual circumstances. The position the child holds within the family will also play a part. For example, it may be harder to put things into perspective if the child is the first born in the family.

Different emotions

• Some degree of guilt is often felt, especially by the parent who, genetically speaking, may have passed on the condition. This feeling may never entirely disappear. However, sharing the feeling and acknowledging it as acceptable will lessen its effect and for most, it will fade
• Panic may be triggered through a feeling of not knowing what to do
• Helplessness may follow
• Some parents may find it easier to cope by denying that their child has any problems. This may also apply to friends along with the family
• Some parents, after acknowledging the problem, may try and seek a cure. Then, if unsuccessful, depression may begin

Grief, loss of status and isolation

• Almost inevitably there is a feeling of grief. A part of the child does not function properly and this is very sad. To grieve for this loss is natural. People should be encouraged to express the grief and not hide the feeling. (It may help to remember at this this time that to the child a loss has not taken place. The child knows no difference.)
• Parents are proud of their child’s achievements and these may be limited or at least parents may think they are. Consequently, parents may feel some loss of status amongst their contemporaries
• Many parents may find it hard to be singled out
• The change in circumstances may engender a feeling of isolation especially at first and this might seem frightening

Fear, frustration, anger and apathy

These are closely related and may follow in quick succession.

Fear for the child’s future and fear that s/he will not be able to develop appropriately is real. This may lead to frustration with parents questioning if they are doing things correctly. It may also be aggravated by the uncertainty which might surround the situation, its pattern and prognosis.

Frustration can easily lead to anger. That is, anger with oneself and anger with the child who has the disability. Sometimes this anger can be directed against the professionals or anyone who gets in the way. Expressing this anger is said by many to be the quickest way of adjusting.

Uttering the phrase ‘why us’ is common to many parents in this situation. Apathy is extremely damaging and connected to the thought ‘I can’t do anything so why try.’

Information

Information about the situation makes addressing things easier. Unfortunately, the support available varies depending on where you live in the UK.

Ignorance is very frustrating and many parents complain about the lack of information on the disability. For example, if the child is visually impaired, accessible and accurate information about the eye condition and its prognosis may be hard to find.

If the child’s disability deteriorates suddenly then parents are in the position of having to make practical and important decisions about the future whilst they may be in shock and without suitable information or support.

Development

Missing developmental milestones is very hard to make up. Extra effort may be needed to catch up along with extra support to do so in the home and in school.

Professional help

The often large number of professionals involved at this time can be confusing and potentially stressful, especially if they are not working collaboratively.

Other children in the family

A great deal of effort and time will be directed to the disabled child. Consequently, a sibling can feel left out or even ignored.

A few points to consider:

• Siblings may have questions which are very hard to ask; for example, will it happen to me and will it affect my children?
• They will know their brother or sister; therefore, they might have ideas and thoughts to share
• A non-disabled sibling may be angry with their disabled brother or sister for making life much more complicated and, if they express their feelings they could be accused of selfishness
• The same emotions affecting parents may also affect siblings
• Even where parents and the disabled child adapt well to the situation a non-disabled sibling can still have problems with emotions

Telling your child about his or her disability

One option is to say nothing.

At diagnosis the child may not be present or be unable to understand its significance. There might also be a desire to protect the child from the implications of the condition. Therefore, not saying anything might be an easier option at the time. Others, including doctors, may also feel uncomfortable about addressing the situation with the child.

An alternative view

Some people believe that it is easier telling the child at the beginning as it becomes harder later. Some also believe that a child is never too young to have questions simply and honestly answered. It is hard at the time but is likely to help the whole family in the future.

Avoiding an explanation

• The child, for example with a visual impairment, might find out from others about the condition and its prognosis. Finding out in this way might result in it being poorly explained and/or containing inaccurate information
• The child may worry more if s/he thinks there is a family secret involving him or her
• Children can be sensitive to atmosphere and may sense that something is wrong
• As the visual impairment develops the child might be unaware of how it is affecting his or her life. If gradual, and not recognised, development may be hampered with time and effort needed later to catch up

An unhelpful role

• A disabled child often arouses sympathy and as a result, s/he can be the object of too much help
• S/he may even find the reactions of others harder to cope with than the disability itself

Inappropriate attitudes by others

• The child may be thought of as clumsy or even stupid
• Children may use a disability as an excuse for bad behaviour or failing to do something

Beneficial understanding

• A disability can lead to frustration. It is therefore useful to the child if s/he can be encouraged to understand why s/he feels this way
• S/he should be encouraged not to hide behind his or her disability or even deny it as s/he cannot always be protected

A need for support

Young people are often very resilient and get on with it. It is easier to accept things when you are young. However, both family members and the young person deal with disability in their own way. There is no single solution to the associated emotional problems.

Continually, the family and young person is having to re-invent themselves. Emotional support is often needed.

As already stated, support should be available at the point of diagnosis. This should be followed up with emotional and practical support for both the family and young person when needed.

Bereavement

Some parents feel that having a child with a disability is accompanied with feelings of bereavement. That is, loss of the ‘normal’ child and this feeling can impact on both family and friends.

When a new child is on the way, ideas about what is going to be expected as parents are developed. Having a disabled child can hugely change this concept and what the future may hold.

The family has defined and developed a role which it perceives as ‘normal’. When it is not possible to perform this role isolation and a sense of loss can occur. This can then lead to psychological damage. Support may then be needed.

Positives

Much of what has just been said can paint a negative picture. It may help to draw inspiration from those with a disability who now hold high profile positions in society. There are for example, politicians, journalists, Olympians and many others to choose from. However, bear in mind that just because one visually impaired person likes parachuting or climbing mountains doesn’t mean everyone with a disability wants to do the same. Others, perhaps the majority, simply want an opportunity to reach their potential.

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.