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Your child's disability and your feelings

By Raising Children Network
 
 

When you find out your child has a disability, you might feel emotionally overwhelmed. This won’t always be the case, however, and there are some effective ways to manage your feelings in the meantime.

Mother and daughter with Down Syndrome
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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 condition and starting seeing the person we love and that we are raising.

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
  • denial.

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

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

When parents finally get a diagnosis of their child’s condition, many often feel a level of relief because it allows them to move on and find help. This relief may come from the knowledge that the earlier the diagnosis is made, the sooner they can begin to find appropriate help, support or services.

There is 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.

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 much support they’re getting
  • whether they understand their brother’s or sister’s disability.

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 may experience the same range of feelings as parents. Read our tips on how to deal with other people’s reactions to your child’s disability.

Tips for coping with your feelings

  • Accept the feelings whatever they are – don’t push them away.  Acknowledging your feelings is healthy.
  • Give yourself time. Negative feelings won’t stay for ever, 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 he or she might have completely different feelings from yours.
  • Get to know other parents 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. 
  • To the extent that you can, maintain the existing family routine. 
  • Celebrate successes and milestones – yours and your child’s – and focus on positives and progress. Your child may be developing differently from other children, but there are lots of reasons to feel positive. 
  • Take time to just enjoy your child without focusing on the disability. With time you will probably get better at doing this.
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 the child.
 
  • Last reviewed21-09-2007
  • References

    Association for Children with a Disability, (2001). Helping you and your family: Self-help strategies for parents of children with a disability. Armadale, VIC: Author.

    Barlow, J., Powell, L., & Gilchrist, M. (2006). The influence of the training and support programme on the self-efficacy and psychological well-being of parents of children with disabilities: A controlled trial. Complementary Therapies in Clinical Practice, 12, 55-63.

    Barnett, D., Clements, M., Kaplan-Estrin, M., & Fialka, J. (2003). Building new dreams: Supporting parent's adaptation to their child with special needs. Infants and Young Children, 16, 184-200.

    Hedderly, T., Baird, G., & McConachie, H. (2003). Parental reaction to disability. Current Paediatrics, 13, 30-35.

    Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14, 159-171.

    Kurtzer-White, E., & Luterman, D. (2003). Families and children with hearing loss: Grief and coping. Mental Retardation and Developmental Disabilities Research Reviews, 9, 232-235.

    Nissenbaum, M. S., Tollefson, N., & Reese, R. M. (2002). The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and other Developmental Disabilities, 17, 30-43.

    Parenting S A (2006). Disability - brothers and sisters: Parent easy guide 61. Retrieved April 12, 2007, from http://www.parenting.sa.gov.au/pegs/Peg61.pdf

    Parenting S A (2006). Children with a disability: Parent easy guide 60. Retrieved April 12, 2007, from http://www.parenting.sa.gov.au/pegs/Peg60.pdf

    Vacca, J. J. (2006). Parent perceptions of raising a child with a severe physical disability: Implications for mental health providers. Best Practices in Mental Health, 2, 59-73.

  • Acknowledgements

    Content funded by NSW Department of Ageing, Disability and Home Care