Below are a list of helpful tips and advice gathered from other parents/carers:
Be prepared: Ensure you prepare for any appointments or assessments you have by writing down your key points and questions beforehand. Before raising a concern with your GP or a specialist, it can be helpful to compile a list of your child’s needs and difficulties. Sometimes it can be useful and more informative to provide video evidence of this. These can provide important start points for the diagnosis process.
Stay organised and keep a paper trail: Start a file and save copies of any reports or documents written about your child by doctors, specialists (speech and language, occupational therapists, physiotherapists etc), education or other organisations involved in their health, education or care. These can be vital pieces of evidence for diagnosis and when looking at support.
It can also be helpful to keep a note of any appointments, telephone conversations, or email correspondence, so that it is easier to keep on track of and chase up loose ends. At the beginning of each year buy a large notebook and keep all notes in this!
Read all information produced about your child: Ensure you read all reports, letters, discharge notifications (from hospital/clinics) about your child to ensure they are accurate and truly reflect your child’s needs and situation. If you don’t agree with information written in reports, challenge it. You know your child best.
Knowledge is power: Learn as much as possible about your child’s condition or needs and the support they are entitled to. However, try to remember every child is different and no explanation will completely explain your son/daughter and their journey, so focus on where they are now and don’t think too far ahead.
Don’t be afraid to ask questions: Be sure to ask questions, no matter how insignificant or silly they may seem at the time. They can sometimes provide the vital clues regarding your child’s needs.
Remember to take each day as it comes, your child’s journey should be enjoyed like any other child’s. Having additional needs may lead to a different journey but it will be no less fulfilling or purposeful. Your child will surprise you every day.