Are you Dad to a disabled child?

Having a disabled child affects all members of a family. Mothers and fathers can react in different ways to the news that their child has a disability or medical condition.

The following article is from the Contact a Family website which provides support, advice and information for families with disabled children, no matter what their condition or disability.

The Contact a Family website also has a downloadable guide for fathers - either as a pdf or podcast. The website is packed full of ideas, facts, advice & support for all parents of children with a disabled child.

Having a disabled child affects all members of a family. Mothers and fathers can sometimes react in different ways to the news that their child has a disability or medical condition. As a father of a disabled child, you may find your partner or other members of the family looking to you for support at a time when you have to adapt to a new and sometimes difficult set of circumstances.

A dad's role is a mixed one. Many dad's stress the fact that they need to be the breadwinner particularly because of the extra costs of caring for a disabled child, but that this can mean being absent from meetings or from carrying out much of the day-to-day care of their child. Service providers often presume, wrongly, that fathers who are not seen at meetings are not doing anything. As a dad you may feel you have a dual role; you may need to offer support but also provide the practical help that is needed.

Like all parents, when you find out your child has a disability the first thing you look for is information. Many fathers feel this is the most important issue - but have learnt that it is vital not to forget the child in their search for information.

You might find it helpful to get information from others who have been in the same situation. A support group or national organisation which specialises in a particular condition might be a good place to start. Contact a Family can help you with this.

It is important to be listened to - to have a sounding block. Try to make use of all your support networks - it might be your wife or partner, friend or neighbour. It might be helpful to try and just get some time to yourself or to spend some time alone with your partner. Remember that it's OK to ask for help.

You might find it hard to talk to friends or neighbours about your child's disability and you may feel your wife or partner has access to other friends and support that is not available to you. But it is important to find someone to talk to if you can and realise that you are not alone in this feeling; other dads feel this way too.

Sometimes there is a key professional who can open the door to lots of information or contacts. This could be a health visitor, occupational therapist or person working for a voluntary organisation. There are a few support groups now for dads of disabled children in the UK. There are also many children's centres, which are initiatives to work with parents of pre-school children. Ask your GP, health visitor or social worker for more information.

You might find a professional counselling service a helpful way of unloading some of your thoughts and feelings. Your GP should be able to tell you about any local services.

Often dealing with how other people react to your child's disability can be one of the most difficult issues. The best way is to approach other people directly and talk openly about your son or daughter having a disability.

These are some tips for dads by dads. You may find contact with others who have gone through similar experiences as you a valuable source of support.

  • Have confidence not to worry about what others think.
  • Speak up - keep asking questions.
  • Make use of services like Crossroads Care or babysitters. When you get the opportunity for time out, just take it.
  • If you don't look after yourself you will collapse. Lack of sleep causes rows and stress.
  • Challenge what people say to you. They said my girlfriend didn't need an amniocentesis because she was only 19. But our child was born with Down syndrome.
  • It's important to look at the child not the condition. The same condition might mean varying disabilities in different children.
  • Hack out a role for yourself.
  • Be prepared to lead.
  • Be positive.
  • You may need to make yourself unpopular.
  • Demand time off.
  • Be strong and resolute for your wife - be a shoulder to cry on.
  • Be proud.
  • Realise the potential of your child.
  • It's hard to tell others about disability and why should we? It's best to let the child explain themselves.
  • Don't brush disability under the carpet.
  • Know your rights with your employer.

The Contact a Family website also has a downloadable guide for fathers - either as a pdf or podcast. The website is packed full of ideas, facts, advice & support for all parents of children with a disabled child.

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Guest Thursday, 18 April 2019

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