Finding out that your child has additional needs shifts your expectation of what life will be like. There’s no right or wrong way to feel, everyone reacts differently.
You cannot change what’s happened but you will adjust to a new reality with different expectations. These expectations will also change and evolve with your child’s different capabilities and accomplishments. You will feel proud of your child’s achievements and how they overcome barriers. Your experiences will be unique.
How are you feeling?
You will experience a range of positive and negative emotions. It can take time to work through these.
You may feel relief when your child gets a diagnosis after a long time. You can name and understand the condition or impairment and this helps you.
You may feel a sense of loss and grief for the life you expected your child to have, the person you thought they might become, or the things you think have been taken away. 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 just too hard to talk about or you feel there’s no one who would understand.
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. Your experiences will likely be different to non-disabled children and even those with the same condition.
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 one 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 and sometimes the smallest thing can be a tipping point.
Try to be flexible if you can. Do not feel guilty if you cannot stick to your plan or manage anything on your 'to do' list. You can do other things instead. Your child might be having a bad day and dealing with this is all you can manage.
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
SWAN UK (syndromes without a name) supports families of children and young adults with undiagnosed genetic conditions.
Find local support services
Your local authority should provide services to support you and your family. These vary between local authorities but they must provide a Local Offer of available services to support disabled children and their families.