Focus on the positives and try not to compare your child to others, especially when they don’t meet the age appropriate developmental milestones.
Accept your child for who they are and enjoy them! It is too easy to get bogged down in the therapy and medical treatment and other parts of our children’s routine.
Don’t be afraid or embarrassed to ask for help if you need it – if you don’t look after yourself, who will look after your child?
Counsellors are a great way to “unload”, don’t be afraid to seek their services.
Remember that no one knows what the future will bring, so live for today not for tomorrow.
Seek out like minded people and identify with other SWAN parents/carers we can all help each other.
Remember that nobody knows your child like you do. You are their expert so don’t doubt yourself.
If you would like to use the internet for further information, ask your doctor or genetic counsellor for suggestions about good internet sites so that you are not reading inaccurate and often alarming information.
Social media can provide support and information to you but be wary of comments that might seem out of place. If they upset you don’t stay connected with these groups.
Identify what services you are entitled to and use them. Home care and respite services from your local council is a good place to start.
Don’t be afraid to ask questions or write things down. It is easy for information to wash over your head when you are in an appointment. You might want to revisit the information you need to absorb later. Taking a support person is also a good option. People can interpret situations and information differently.
Keep a record of your child’s specialists’ reports, letters and test results. Your GP should be kept in the loop as well. Scanning documents is a great way to store them.
Keeping a copy of your child’s progress is a great way to track their development. Every child will tell their own story and develop at different rates. Photos and videos are an easy way to record events and milestones.
Be assertive: you are your child’s best advocate. This may mean making numerous phone calls to access a service.
Try not to let anyone put limitations on your children: they will tell their own story.
What can we as parents/carers do to help?
Spread the word and let the broader community know there are a large number of children without a diagnosis.
Form close links with health and social care experts both in Australia and overseas so they can create a more positive experience when liaising with parents/carers of undiagnosed children.
Lobby both the private and public sectors to create awareness and attract more funding for genetic research.
Support others who are in similar situations to ourselves.