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Dr Duncan Thomson - Finding Your Child Has a Disability - 12 August

Finding out your child has a disability: What to expect and how to cope

The majority of women give birth to healthy babies that continue to develop in more or less the way that their parents expect. A minority, however, hear the news that almost all parents dread: that their child has a disability.

How do people commonly react to the news?

Clearly reactions are unique to each person according to their beliefs about what the disability means for them and their child. Commonly, though, the news is catastrophic and the sense of loss enormous. Even before a child is born parents will harbour hopes, dreams and ambitions for their unborn child. These could range from dreaming that the child will be a future All Black to the hope that the child is simply healthy. When people find out that the child is disabled, no matter what age the child is at diagnosis, the news can be catastrophic. It can feel as though all these hopes have been dashed. Parents have to try and come to terms with the news, a process which is likely to be ongoing and involve a lot of strong and painful emotions.

People will often initially feel numb and in shock, possibly denying that the news is correct and seeking a second opinion. They might then experience anger, possibly at medical staff; guilt, perhaps for drinking or "over-doing things" during pregnancy and, perhaps more than anything, sadness, at the loss of the healthy child they had dreamed of.

This is similar to a grieving process. The process is important as it allows the parents to begin to accept the loss of the child they expected to have and start to focus on looking after the child they now have. The experience can feel overwhelming but it is both normal and important if the child is going to be nurtured. 

How can this affect marriage?

Firstly, parents might be at quite different stages of grief, for example, a woman who is filled with sadness might find it impossible to understand why her husband blames the doctors involved with the child. The important thing here is to recognise that you have both experienced a loss and are dealing with it the best you can. You need to give each other both the space and support to voice emotions that might not be the same as yours.

Even after you have gone some way to accepting the fact that the child is disabled you will still most likely have added stress. Dealing with lots of or not enough professionals, interrupted sleep, added financial pressure and resentment of other people are all things that may have to be contended with and things that might strain a marriage. The other important things are going to be learning together about the disability, celebrating milestones and achievements, however small, and using any supports you can access - you might well need them.

Does the disability make a difference?

Yes, clearly some disabilities have a greater impact on a person's life than others but equally important are the beliefs and understanding the parents have about what the disability means for the individual and the family. You might be told about something you had never even heard of or have a mistaken belief about what the disability might mean, for example someone might assume that Down's Syndrome means that their child will never reach adulthood when in fact the life expectancy for people with Down's Syndrome has almost doubled over the last 20 years. Again, learn about the disability but take a balanced view. You are likely to get quite a different perspective from a medical text book than from other parents of children with the same disability. Remember that although you may feel totally alone, you rarely are the only person who has had to deal with this.

I don't feel like I'm coping, what can I do?

Firstly, think about how you are approaching things. People who tell themselves that they should be able to look after the child by themselves without any help could easily burn out, become resentful, then feel guilty about that then feel depressed. On the other hand someone might feel so over-whelmed by the child's needs that they don't know where to start. It isn't easy but try to be fair to yourself. The situation might be asking an awful lot from you so it can only be about doing your best, asking for other people's help when you need it and finding times to look after yourself as well as your child. Also, we have social systems that support people with disabilities. Find out what you are entitled too and don't feel guilty about using it, it's why its there!

Useful Websites - What everyone keeps asking! A comprehensive disability website including information about living with disability and support services. - A support and information network for parents and caregivers of people with special needs. They have an excellent feature where they will match you up with someone in a similar situation so you can talk to them.