Adjustment
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Having a child with a disability
When a child is born with a disability or is diagnosed with a disability after an accident, members of the family can all react differently to the news.
View a video clip of one parent's reaction to having child with a disability (this link loads a page that commences streaming of 1.4 Mb MOV file - a text description and transcript of the video is provided).
You might also find that some friends do not know what to say to you when they find out that your child has a disability. Some may even avoid you, or their reactions toward you and your child may really hurt. The combination of family members reacting differently and not always being able to turn to friends, can make adjusting to the diagnosis even harder.
View the booklet 'Communicating With People With Disability' (PDF - 449Kb).
It doesn’t matter how mild or severe the disability is, parents still grieve for the loss of what could have been. When expecting a child, parents usually have hopes and dreams of what their child will be like. Being told that your child has a disability can lead to lots of different emotions. Grief can produce lots of emotions. These emotions are sometimes difficult to deal with, especially in the early days. They are often painful and intense feelings. Sometimes parents experience emotions that they have never experienced before and they can be very difficult to describe to other people.
The more recognisable emotions include:
- sadness
- anger
- fear and uncertainty about the future
- self-blame
- feelings of hopelessness.
People may experience some or all of these, as well as other emotions and thoughts. These feelings are associated with the ‘loss’ of the child that you hoped for. The feelings may also recur through different stages of your child’s life.
View a video clip in which Jenny, a psychologist talks about parent reactions to having a child with cerebral palsy (this link loads a page that commences streaming of 1.7Mb MOV file of 59 seconds duration - a text description and transcript of the video is provided)
Triggers for these emotions may include:
- visiting hospital for checkups or procedures
- seeing other friend’s children
- trying to plan child-care
- going through the process of finding the best pre-school or school for your child
- checking out respite options
- shopping with or for your child
- going to birthday parties or even family get-togethers
- finding it hard to do something that used to be routine and easy to handle
- important dates in your child’s life, such as birthdays, the day of diagnosis, starting child care, kindy, school or high school
- your child approaching adulthood.
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Coping with your child's disability
Having a child with a disability may lead to many lifestyle changes:
- One of the parents may need to give up work to care for the child.
- There may be regular visits to doctors and therapists.
- The family may experience financial hardship.
- Other things that can cause stress include tiredness, lack of support, isolation, differences in the way you and other family members cope, marital difficulties, and grief.
- Depending on the severity of your child’s disability and the amount of support you have, you may feel that you do not get very much time alone or to do things you enjoy.
It is really important that you look after yourself, especially if you are the parent of a child with special needs. Its not just not OK, but very important to take time out from both your caring and your grief. Caring for a child with special needs can be both physically and emotionally demanding. Unless you take time out to look after yourself you may become burnt out. Stress and tiredness may also lead to physical illness. Although it is often hard to do, it is important to make your own health and wellbeing a priority. In the long term, this benefits not only you, but also your child with special needs and other family members.
Different families have different ways of dealing and coping with the emotions and stressors that they may experience when they have a child with a disability. How you react may depend on factors such as:
- cultural differences and expectations
- social supports –friends, family and service providers
- social supports –friends, family and service providers
- current lifestyle
- the details of your child’s disability – how severe it is, how much you need to do for your child
- your relationship with your child
- your personal way of coping and your resilience
- the way your child copes with situations
- how other family members (including brothers and sisters) cope and adjust to changes.
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What parents can do
- Take care of yourself: Try to get time for yourself to do things that you find relaxing and enjoyable. Organise respite for your disabled child to give yourself a chance to recharge your batteries. Novita family support services can assist you if you have questions about respite.
- Focus on the positives: Embrace your child for the things that he or she can do rather than focusing on the things that they can’t. Take notice of your child’s strengths and abilities.
- Learn about your child’s disability: Many parents say that they feel more positive and prepared for the future after learning all they can about their child’s disability. Places you might wish to look for information about disability include this website, the Internet, your local library, or the Novita Toy and Resource Centre.
- Network with other parent’s of children with disabilities: Novita provides several opportunities for mums and dads who might share similar experiences to come together throughout the year. For more information go to the following web pages on this site:
- Set realistic goals for your disabled child and be proud of their successes, no matter how small.
- Spend one-to-one time with your other children, if you have them, on a regular basis.
- Get some outside help. Everyone has times when they feel overwhelmed and run down. This generally occurs when life becomes unbalanced. If you find yourself feeling this way for more than a few days, it may be useful to contact a Novita psychologist for a chat.
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What Novita can do
Each child and family is different, so the details of what Novita can do to help you adjust to the differences in having a child with special needs varies for each family. However Novita staff will:
- listen to you if you want to talk about your situation
- provide you with information about what other parents have found helpful to adjust to having a child with a disability
- put you in touch with other parents who may share your experiences
- connect you to whatever practical support services are available either within Novita or in the community.
Novita knows that parents are the most important people in the life of any child and the therapy team understand how important it is to support parents in their day-to-day care of their disabled child. More information about members of the Novita support team.
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Where to go for support or more information
Novita Psychologists
A Novita psychologist can offer assistance and support, and can provide parents with information about counselling, and resources in the community.
Booklet
View the booklet Communicating With People With Disability (PDF - 449Kb) produced by Maroondah City Council, Ringwood, Victoria.
Disclaimer: The above information on is of a general nature only and does not constitute advice. Novita Children's Services makes no representations, express or implied, as to the accuracy, usefulness, suitability or application of the information to a child's particular circumstances. Use of the information above is at your sole risk, and you should seek professional advice before acting or relying on the information. Novita Children's Services accepts no liability for any damages or loss that may arise from the use of, or any omission from, the information provided.
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