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Due to siblings’ increased knowledge about disability and health issues, it is possible that siblings think disability is more prevalent than it actually is. Some recent research with adult siblings of people with Down syndrome indicated that adult siblings may perceive they have a greater risk of having a disabled child than is actually the case.

Siblings also know first hand how challenging parenting a disabled child is and many feel that they would not cope. It is also because they know that the current level of support for disabled adults in our society is not good enough. Adult siblings who explore this issue do not undervalue the lives of disabled people.

Genetic counselling

It is important to get accurate information about your potential risk, and make informed decisions about having your own children. We have spoken to many adult siblings who have chosen through fear alone not to have children. If you have any concerns at all about your brother or sister’s condition being genetic or know that you or your partner have someone in the family with a genetic condition, you can visit a genetic counsellor. This is a trained medical professional with knowledge of genetics. He or she will help you find out about any genetic basis for the condition, and signpost you to support about any related emotional or ethical issues. The decisions you make as a result are yours (and your partner’s); you will not be told what decisions to make, but be given information to help you make decisions that are right for you. 

Talking to partners about children

Many adult siblings say that they need to make sure that their partner is fully aware of the implications of disability for having their own children. Have open and honest discussions about your feelings and views and this will help you find out if you have shared values about having children and about disability. If this seems to be difficult to do by yourself ask your partner if he/she would be happy for a counsellor to facilitate this discussion. Here are some suggestions for topics to cover in your discussions about having children together.

  • Share openly any concerns or fears you may have about having children due to you family history.
  • Arrange a meeting with a genetic counsellor to get information about the potential risks of having a child with the same condition as your brother or sister.
  • Discuss the pros and cons of either one of you having genetic screening prior to a pregnancy – a genetic counsellor can help you do this.
  • Talk about the decisions you would make about having pre-natal testing and what action you might take if the testing identified disability or serious illness.
  • Discuss how you would deal with any negative comments about your suitability for having children, from members of your partner’s family or friends.
  • Talk about your values in relation to disability so you can learn what values you share and those that you don’t.
  • Discuss how you would deal with things or cope if you had a disabled child – it is important to remember that for many conditions your risk will be the same as for everyone else in the population and that disability can be acquired in childhood.
  • Share the positive things you have learned from growing up in your family that will give you a head start as a parent – such as parenting skills, understanding behaviour and communication, being able to cope in a crisis, patience, a good knowledge of first aid, and being able to keep things in perspective.
  • Give your partner time to ask questions, time to think about the things you have discussed, and respect their way of seeing things. For some partners there may be a lot of new information to take in and they may need time to reflect on it before making any decisions.

Look at all the options

There are other options that may be open to you and it is important to explore all of these if you want to be a parent including:

  • Adoption and fostering
  • Parenting children who have come along with your partner
  • Assisted reproduction e.g. egg donation

Useful questions to ask yourself

  • What would having a child of my own give me in life?
  • What feelings and experiences would I expect to have through being a parent?
  • What other things could I do in my life to bring me some of these same feelings and experiences?

We acknowledge that there are no easy answers here for siblings on this issue, however talking about it to partners and to other adult siblings can really help overcome the sense of isolation often felt by siblings about this.