Coming to terms with your child's diagnosis

You will experience a range of positive and negative emotions. It can take time to work through these.

A diagnosis can sometimes help. It may help you understand your child's condition better.

You may feel guilt about your child’s condition, impairment or additional needs. This is a common reaction and it can take time to come to terms with.

You may find it difficult to talk about because you are scared of being judged or blamed. Sometimes it can be too hard to talk about or you feel no one would understand.

Help with negative emotions

Reading about or watching other parents share their experiences and feelings can help.

When you feel ready, sharing your own feelings with someone can help. Parents often find the most useful support is from talking to parents of a child with the same condition.

Emotional support for families of a disabled child

You could also try:

• reading or writing a blog
• watching other parents' video channels
• visiting online communities and parent forums
• calling a helpline
• talking to your partner, family or friends
• going to or setting up a local support group
• talking to a counsellor

Try writing your feelings down if you do not feel comfortable sharing them.

Sometimes changing your routine, joining a new club or taking up a new hobby can also help.

Support groups for parents

Worrying about the possible cause

Try to focus on the positives rather than worrying about what caused your child’s difference and why. 

Look at what your child can do instead of what they cannot. Knowing the cause will not usually change your child’s needs, development and right to support.

Your doctor may be able to tell you the cause but it can take a long time to find out, possibly years. Sometimes doctors will not be able to tell you the cause or why it happened.

Every child has different likes and dislikes, strengths and weaknesses.

Try not to compare your child to others. Focus on your child as an individual.

Enjoy the good days. Celebrate the achievements or highs, however small. These experiences may not be what you were expecting but they are just as important.

Plans can be helpful but they can also cause unnecessary pressure. You can start to feel overwhelmed with everything you need to do. Sometimes the smallest thing can be a tipping point.

Try to be flexible if you can. You might not manage anything on your 'to do' list. But you can do other things instead. Your child might be having a bad day and dealing with this is all you can manage.

Getting some rest, looking after your mental health and asking for support can help you and your family manage.

Managing mental health

If you can, try taking a little time off. Try relaxing by:

• having a bath
• going for a walk
• watching TV
• reading a book or magazine
• catching up with friends

Managing your stress as a parent of a disabled child

Finding respite care

Communication is important for your mental health and emotional wellbeing. It can be the difference between feeling isolated or overwhelmed and being supported.

You may find it takes some time to talk to friends and family about your child’s condition. Do everything at your own pace. There is no right or wrong way to do it.

You may also find it hard to talk to your partner about your feelings, fears and worries. Talking to your partner can help you to support each other better and understand each other’s feelings.

Talk to our online community and get support from advisers or other parents.

You might find doing research helps you to understand your child’s condition, impairment or additional needs. 

Every child is different. Some of the information you find may apply to other children with the same condition but not yours. Bear in mind that not all information online is by experts.

To find information that relates to your child:

• talk to other parents about what they found useful
• ask your doctor for recommended reading
• search for relevant voluntary organisations and charities

NHS conditions pages

The charity Contact has an extensive A to Z of conditions. There is information on support organisations, symptoms, causes, diagnosis and treatment.

SWAN UK (syndromes without a name) supports families of children and young adults with undiagnosed genetic conditions.

Find the Local Offer on your local authority’s website. It will list the services they have for disabled children and their families.

Contact your local authority (GOV.UK)

The Local Offer should include an independent advice service for parent carers. They have different names, for example:

• Parent Partnership
• Special Educational Needs and Disabilities Information Advice and Support Service (SENDIASS)
• Information Advice and Support Service (IASS)

Find your local Information Advice and Support Service (Council for Disabled Children)

Find your local parent carer forum (Contact)