By Raising Children Network
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Mother and daughter with Down Syndrome
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    Use this A-Z search to read a brief explanation of disability terms as well as definitions of the disability professionals you may encounter.Go to Disability Reference
 
When your child gets a diagnosis of disability, you might feel emotionally overwhelmed. This won’t always be the case, though, and there are some effective ways to manage your feelings in the meantime.

For a while after the diagnosis all I could see was his cerebral palsy. With time, it’s like I got Jack back. I almost stopped seeing the disability and starting seeing the person we love and that we are raising.
– Parent of a teen with cerebral palsy

Your feelings: what to expect

Every parent is different. But after a diagnosis of disability, it’s very common for parents to feel confused and overwhelmed, shocked, disbelieving or numb, and denial.

A whole range of feelings is normal. As you get used to the situation, you might feel sad, especially when thinking about your disappointed hopes and dreams for your child and yourselves. There can be feelings of blame – directed towards yourselves and other people – as well as fear about the future. You might also feel confused and overloaded, with too much information, not enough information, sometimes conflicting advice and pressure to make decisions.

Your feelings can be influenced by how your child’s condition affects other aspects of your lives – it could have an impact on your work, social life, or even the amount of time you can spend on personal interests or hobbies. As with any family, the amount of support you have from others, such as your partner, family and friends, also affects how you feel. For example, lots of encouraging support will help you feel more positive about your new role.

When you finally get a diagnosis of your child’s condition, you might even feel relieved because it lets you move on and find help. This relief can come from knowing that the earlier the diagnosis is made, the sooner you can begin to find appropriate help, support or services.

There’s no ‘right’ way to feel. You can’t prevent your feelings, and you shouldn’t try. Dealing with your feelings is part of coming to terms with the diagnosis and moving on with your life, your child’s life and your family’s life.

Video All about disability diagnosis

This video is available in different languages     Show
Download video   68mb
In this short video, disability experts talk about what to do if you’re concerned about your child’s development. Parents of children with disability talk about getting a diagnosis, following their instinct and getting second opinions. Parents also talk about how they felt when they heard their child’s diagnosis. They say it’s OK to grieve.
 
I’m just all over the shop. My feelings change from minute to minute – sometimes it feels like they’re out of control.

Different relationships, different feelings

Siblings
The way siblings feel will depend on:

  • how old they are
  • how their parents are coping
  • how the sibling with disability is talked about and to by their parents and close family and friends
  • how much support they’re getting
  • whether they understand the disability.
You might like to read more about siblings’ feelings and our tips on helping siblings cope.

Grandparents, family members and friends
Extended family and friends will also be affected by the diagnosis, and can experience the same range of feelings as you. Read our tips on how to deal with other people’s reactions to your child’s disability.

Tips for coping with your feelings

  • Accept your feelings, whatever they are – don’t push them away. Acknowledging your emotions is a healthy thing to do.
  • Give yourself time. Negative feelings won’t stay forever, but they can come back from time to time – for example, at your child’s birthday, when someone in your extended family has a child, when there’s a family wedding or graduation, or your child starts preschool or school. Over time, you’ll get better at recognising the feelings and dealing with them. 
  • Be kind to yourself. Take care of yourself and keep healthy.
  • Collect good information about your child’s diagnosis. The more information you have, the less you’ll need to wonder or worry. 
  • When you’re ready, talk to people close to you, particularly your partner, about how you’re feeling. Try to accept that other people might have completely different feelings from yours.
  • Get to know other parents who are in a similar situation
  • Try to avoid comparing your child with other children. Every child is an individual. 
  • Seek professional support and information. Your local GP and community-based early childhood intervention services are good sources and places to start. 
  • Maintain the existing family routine as much as you can. 
  • Celebrate successes and milestones – yours and your child’s – and focus on positives and progress. Your child might be developing differently from other children but will be reaching her own goals and milestones along the way. There will be lots of reasons to feel positive. 
  • Take time to just enjoy your child without focusing on the disability. With time you’ll get better at doing this. 

Video Disability diagnosis: parent reactions

This short video features parents of children with a disability talking about their reactions to the diagnosis. Some fought it, some accepted it, and some made lifestyle changes. Parents differ in their reactions to the diagnosis, but they say it's important to work through your emotions. This way you can start to help your child.
 
Most parents and families eventually start to feel OK. They have positive feelings such as love, joy, acceptance and satisfaction, and they start making new plans and having new dreams for their child.