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Adjustment to diagnosis

When your child receives a diagnosis of a developmental condition, it is normal to experience a range of emotions. This can include strong negative emotions such as anger, sadness, worry, and difficulty accepting the diagnosis. Coming to terms with what a diagnosis will mean for your child, your family, and your future is often compared to a grieving process. For some people, receiving a diagnosis may bring a sense of relief, as it can help them better understand their children’s behaviours, and access appropriate support. It is important to recognise all those emotions, and that different people in the family may respond in very different ways.

What you can do to help

Receiving a diagnosis can open doors to more specialised knowledge, and to a community of people who understand your situation, for example, in support groups or online forums. It can be helpful to learn about challenges your child might face due to their condition, and strategies to support areas of difficulty.

However, sometimes spending a lot of time researching your child’s diagnosis can become overwhelming: use resources recommended by your health professionals and try to deal with information piece by piece as you need it. Keep in mind that the diagnosis does not change your child - your child is the same person you know and love. It is important to recognise the strengths that your child has, and build on these.Many parents have told us that the most helpful thing has been to focus on their child in the present, seeking love, care and play, and taking things one step at a time.

Thinking about the future can create a lot of anxiety, and we can worry about things that may not happen. Meeting families with older children with disabilities can also bring hope and reassurance, as they have found their way through many obstacles, to lead happy lives. It may not be the life they had anticipated, but is equally full of value.

Hayley Goleniowska, author of award-winning blog and mother of Natty, who has Down's Syndrome, offers tips to parents of a child with a learning disability.

"No-one signs up for a child with a learning disability and for many there will be a time of readjustment, even mourning for the baby you thought you were expecting. But it’s important to learn to accept your child for who they are and not try to make them someone or something they are not. That leads to frustrated parents and unhappy children. There will be challenges but you will learn and grow together in dealing with them.

"I had to give myself a talking to when Natty was tiny as I felt she was turning into a ‘project’, simply the target of lots of SALT and physio activities. Of course, she is our daughter and sister first and foremost. Success at school is not the be all and end all in life and in fact having Natty in our lives has made us re-evaluate our priorities: friendship, food, music, travel, family, enjoying the moment. Time spent at home with a loving family will influence your child the most. Enjoy your child, show them they are loved just as they are, have fun, sing, be silly. Praise their successes, however small the steps and set achievable, realistic goals that will stretch and encourage development."

Read more at here: Ten Tips for parents with a child with a learning disability.

How we can help

If over time you find you are still struggling with coming to terms with your child’s diagnosis, please speak to your child’s paediatrician who can discuss with you options for further support or visit our Autism section for further advice - Coming to terms with a diagnosis.

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