Sometimes you know before the words are said. Sometimes you are blindsided. The diagnosis remains the same, but what happens next?
Processing a new diagnosis for your child can take time. You may feel a complex mix of emotions, from shock, worry and numbness to grief and helplessness, all alongside the urgent need to do something to help your child.
At first, you may feel confused and overwhelmed. But it’s important to speak with the relevant medical professionals to get as full a picture as possible, especially if you were given a lot of information at diagnosis. Informing those who may need to know is also key to getting the support you and your child need. This includes family and friends, but also school and other agencies. You may also be entitled to financial benefits as well as other practical support. Below is an overview of some of the main points, with links to further information and services.
Practical
- A lot will depend on your child’s age and the seriousness of the diagnosis. Speak to your child’s doctor or medical team about what they recommend. Get everything in writing and keep it together. If you apply for support, financial or otherwise, it will help to have documents confirming the diagnosis.
- Ask your child’s doctors for recommended reading and research the condition they have been diagnosed with. You can also turn to services like the Newlife Nurse Helpline or condition specific information.
- Ensure your child’s school has an up-to-date care plan or Education, Health and Care Plan (EHCP) in place. This will help them to provide the right support. Find more information here.
- Check which benefits you may be entitled to and make your applications. These may include Personal Independence Payment (PIP) or Disability Living Allowance (DLA). For details on how to claim click here.
- You can request a Child in Need assessment from your local council to see what practical help they can offer. This could include respite care so you can have a break. For more information about this click here.
- Research your council’s Local Offer. This is a directory of local services, therapies and activity groups for children with SEND. Every local authority is required by law to publish a comprehensive, easily accessible directory for children and young people (from birth to 25) with special educational needs and disabilities, as well as their families.
- Connect with charities, both national and local, to build your support network. These may be specific to your child’s diagnosis or more general, such as Newlife. Newlife offers a range of services that may help, including equipment provision, accessible play and a nurse helpline.
- Find support groups that are useful to you. They provide helpful information, and you may also be able to connect with other families who can offer their own advice and support.
For your child
- Let them know it’s okay to feel confused, angry or sad, and remind them that they have plenty of support.
- If your child is older, explain what is happening in an age-appropriate way, without overwhelming them with too much detail.
- Ask how they are feeling and gauge their understanding of the situation. If you do this regularly it can also help you spot any changes in their condition.
- If they appear to be struggling, talk about how they might be feeling. Stress can show up in changes to eating, sleeping, schoolwork or friendships. Talking about these worries in an age-appropriate way can help your child come to terms with their newly-diagnosed condition.
- Let them ask questions and raise concerns. If you can’t answer, let them know you can raise it with their doctors together.
- If you have a younger child, you can explore how they are feeling through play, drawings or making up stories together.
- Keep routines as consistent as possible. A calm, safe and predictable world can help them feel more in control.
- Celebrate all the small wins.
For yourself
- A rollercoaster of emotions is normal, and there is no ‘right’ way to feel. Give yourself permission to process all your feelings.
- You need support too. There are many national support groups, and you may also be able to find one local to you.
- Don’t isolate yourself from family and friends. Accept support if it’s offered. This could be a chat over a cuppa, someone looking after other children while you attend hospital appointments, or batch-cooked freezer meals so you don’t have to cook.
- Remember to look after yourself. Sleep is important to help you cope, as is eating well. Take time for yourself, whether that is a hot shower, reading a book or spending time on a hobby. This can help you relax and re-energise and help prevent burnout.
- Professional support can be useful. If you struggle to find time for face-to-face appointments, many providers offer telephone or video call sessions.
- Respite care can be invaluable in helping you cope and preventing burnout in the long term.
You can find additional resources, support and signposting in our Support Hub.