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 a sense of loss and grief for the life you expected your child to have or the person you thought they might become. You may go through shock, disbelief or anger and possibly question ‘why me?’ or ‘why my child?’.
You may also 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’re scared of being judged or blamed. Sometimes it can be too hard to talk about or you feel there’s no one who 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.
You could also try:
reading or writing a blog
watching or talking on video blogs (vlogs)
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.
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.
Focus on your child, not their condition
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’re just as important.
Take a day at a time
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.
Look after yourself
Getting some rest, looking after your mental health and asking for support can help you and your family manage.
If you can, try taking a little time off. Try relaxing by:
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 any recommended reading
search for relevant voluntary organisations and charities