Following are a number of well documented thoughts associated with having a disabled child.
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.
Grief, loss of status and isolation
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 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.
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.
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:
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
An unhelpful role
Inappropriate attitudes by others
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.
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.
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.