With about 6,000 known genetic disorders, it is estimated that one in 25 children is affected. Genetic conditions completely vary, some are diagnosed during pregnancy while others are at birth or later in life. Approximately 30,000 babies and children are diagnosed in the UK each year.
Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK that supports individuals and families affected by a genetic disorder, and money raised on Jeans for Genes Day helps support and care for children with genetic disorders.
This year, Jeans for Genes Day will take place on Friday 21st September, ahead of the event, Anna Whaite, Genetic Counsellor at Genetic Disorders UK, discusses ways of telling your child they have a genetic disorder.
Little by little
“When it comes to talking to your children about a genetic disorder there are no hard and fast rules. Children often can’t see the full picture but can handle small amounts of information at a time. Young children can be more accepting than older ones so giving information gradually throughout childhood is reported to be a helpful way of sharing information, rather than a big ‘one off’ education session out of the blue.
You don’t need to know it all
You don’t have to be an expert in genetics or medicine to support your child. Keep things simple, you could even try different ways of saying what you want to say before speaking with your child. What they need is to know they are loved and supported as they are told about a genetic diagnosis. It is okay to not know the answer to every question – keeping the lines of communication open helps. Keep a list of things that they want to know and explain you will try to find out the answers and you can learn together.
Timing and words
Children, even at a young age, are often perceptive. If a parent cries for example they may notice and could think it is their fault. Try to pick simple language when talking about a genetic disorder, maybe compare things to what they already understand. Talking about feelings as well as facts can help your child understand their emotions and learn how to manage them. Do use words to explain any emotions that you show but try to keep things focused on your child.
Be aware that the timing of follow up conversations is usually out of our hands. Children will naturally have questions which may come up at unexpected or less-than-perfect times. Try to accept this and let them know you are happy to talk. Some families report that they have important conversations at times when other things are happening, like driving, or washing up – this can avoid it feeling too intense.
Parents may naturally find that one parent is more able to have a discussion with a child. Don’t forget to talk to ‘unaffected’ children too. They also see and hear what goes on and may have questions or concerns of their own
Looking after yourself
Parents can feel a burden of responsibility relating to genetic disorders in their children. There can often be a strong desire to ‘protect’ children and some put off talking about difficult or distressing things. Preparing for the first conversation about a genetic diagnosis can be upsetting and difficult. Make sure you have someone to talk to during this process.
You are not alone
“If you want help with talking to children – ask! You may have a medical specialist involved in your child’s care already who can help you. A genetic counsellor may be accessible via your local genetics centre. If your child has a learning disability, is very young, or has an extremely rare condition and you are concerned they may not fully understand the details, you may need extra support.
“There are charities and support groups that help children or adults living with a genetic disorder. Connecting with these organisations may provide you with valuable support and advice. There are also parent forums, blogs and Facebook community groups setup specifically to talk about, or provide information, on certain genetic disorders. Many other people are in the same position as you, ask for suggestions, talk about what works and challenges on the way, support each other!
To donate to Jeans for Genes please visit their website, visit JeansForGenes.org.uk