When your child has a disability
child; teenager; young; person; disability; disabilities; handicap; grandparent; prejudice; safety; mental; retardation; social; skills; school ;
Finding out that your child has a disability is one of the most shattering things that can happen to parents. There are big changes for parents and families to make that may cause stress and put pressure on relationships. It will help you and your child if you seek support early from professionals as well as from family and friends.
It may happen at birth, after an illness or accident or you may find out something is wrong as your child develops. You may go through many of the emotions people feel after a major, sudden loss. You may feel grief at the loss of dreams for your child's future and worry about their quality of life.
Other parents in the same situation can be helpful too. It's also important to take time to look after yourself. There is more about this in the topic 'Helping your disabled child'.
Remember that every child has different abilities. Children with a disability can have a joyful life, bring joy to others and achieve quality of life.
Quality of life
Quality of life is not about ability. It's about your child having happy times, feeling well, safe and comfortable, feeling pride in the things she can do, and that she is a loveable person. Children with a disability can lead positive, happy lives and bring joy to themselves and others.
When you first realise your child has a disability you may feel the grief that many people feel after a loss. This can include shock, disbelief, anger, blame, guilt, sadness, questioning why it happened to you and your child, and panic or fear that you won't be able to cope.
These feelings can (but may not) come back at times through your child's life as new losses happen; e.g. if your child can't go to the local school, make friends, or become independent. So while you can achieve some healing, it's not just one loss but a loss that may happen over and over. Take time to grieve when you need to. You don't have to manage this alone as there is help available.
How well you cope with your own feelings and your child's disability depends on lots of things:
- what sense you are able to make of what has happened to your child (what you tell yourself about it). This can be affected by how well it was explained to you and what the cause was.
- your partner's reactions and how he or she copes
- the amount of support you have from family and others
- the amount of respite you have
- the relationship you build with your child
- the quality of life your child has
- the effect it has on your family life and working life
- for some people, support from their religious faith.
If you have negative feelings towards your child that won't go away it's important to get help. Remember many parents feel this way at times.
Dealing with grief
Grief can be short-lived but more often it's a long journey of ups and downs. There may be times when it seems your grief will never really go away, but there is hope.
It's helpful to realise how far you have come. Think about when you first found out your child had a problem. How did you feel then? How were you coping? Think about how you feel and cope now. You might find you have come a long way.
If your grief does not get better over time it will affect the way you care for your child, your other children, yourself and your relationships. If this happens, seek help to work through your feelings.
Some signs that your grief is not getting better are:
- if you can't seem to 'get away' from memories of your crisis.
- if after time, you still cannot see anything good about your child's life.
- if you can't really accept your child as she is, but still believe she will have great outcomes in ways she cannot.
- if you continue to be very angry or feel very guilty.
- if you are still looking for a reason it happened, after you have had all the possible information.
- if you can't see any of the problems but think of it all as a blessing.
If you still have any of these feelings after a year or so, it's worth talking it over with someone.
Your needs and rights
This is your child and you have the right to say what you want for your child and to be heard. You have the right:
- to look for a cure or treatment if you want to, even if your doctor says there is nothing that can be done. If your doctor does not support you, then maybe you need to try another doctor. If you feel the need to keep on looking when you've had the same news many times, you may need help to move on so that you can best care for your child
- an explanation of what has happened and why, as often as you need to hear it
- information about your child's condition and how it will be managed, and to feel you can have some control of this
- for you and your child to be treated with dignity
- a break from caring for your child.
Your child's needs and rights
Your child has the right to:
- information about what has happened
- know the words about his disability
- information about his day to day care and treatment
- ask questions
- have as much say as possible over what happens to his body
- be treated with respect
- the chance to achieve as much as he can.
- be valued as a person
- the chance to have friends
- help to deal with being seen as different by other people.
Relationships in your family
Having a child with a disability can put stress on family relationships. It's important to deal with this for your child's sake as well as your own. It's easy to be overwhelmed and spend all your time and energy on your child with the disability and not others. It may help to:
- share your feelings with your partner and listen to his or hers
- share the daily tasks – this says 'we're both in this together'
- make times to have with your partner – this may be hard to do but is very important
- remember your other children – they have as much right to your love and attention as your child with the disability. Spend time with them so they won't feel ignored or unhappy.
The support of grandparents can be great for you and your other children. There can be special challenges when the grandchild has a disability.
- Grandparents feel pain for their own child as well as for their grandchild and may worry about the future.
- Some may not want to accept that the child has a disability and may act as if it has not happened to avoid the pain.
Share your feelings and grief so you can help each other.
- Grandparents are suffering from the loss at the same time as the parents, and may not be able to give parents the support they need.
- Some grandparents may blame one of the parents.
- They may feel they have done their child rearing, and want to live their own lives, but now feel obliged to help.
- Make sure grandparents know about the disability and the treatment available.
- Respect grandparents' feelings about what they can do to help.
Grandparents from some cultures may find it harder to accept disability. It might help to get support from a community leader.
Coping with prejudice
People who have a disability are at greater risk of being teased, bullied or ill-treated. You can help your child to deal with this.
- Ask what practices childcare centres, preschools or schools have to deal with discrimination and bullying before you enrol your child.
- Tell your child about her condition so she can answer questions about it. You might ask the teacher for the chance to tell the class about your child and answer any questions.
- Help your child to find children to play with who can do the same sorts of things she can (even if she is in a mainstream school) so she can have friendships on an equal basis.
- Give your child some ways to respond to teasing such as holding her head up and ignoring it, pretending there is a magic screen around her so the words can't touch her, staying near a group. You could practise this with her.
- Let your child know that if she is being bullied it's important to tell an adult.
- Seek help if your child is being bullied.
- Having a child with a disability can be stressful and demanding.
- Children with a disability can have happy, enjoyable lives. Remember every child is different – focus on the positive things about your child.
- Think of yourself as a partner with professionals and work with them – remember you know your child best.
- Teach your child to look after himself and keep safe, as far as he is able.
- You have the right to expect the same standard of health care and support for your child with a disability as for any other child.
- It can be helpful to find a support group of parents with similar experiences. Keep up your contact with supportive family and friends.
- Take time to do things for yourself. Looking after yourself and your relationships is important for you and your child.
- Parent Helpline: Tel 1300 364 100
24 hours a day, 7 days a week for advice on child health and parenting
- Child and Family Health Centres: Tel 1300 733 606
9am – 4.30pm, Monday to Friday to make an appointment at your local Centre. They can help you find a range of support services.
- Kids Helpline: Tel 1800 55 1800
- Disability SA: Tel 1300 786 117
- Novita Children's Services: Tel (08) 8243 8243
- Disability Information and Resource Centre: Tel (08) 8236 0555 TTY (08) 8223 7579 Country callers (SA only) 1300 305 558
- Disability Connect
diSAbility connect is for parents and carers of children and young people with disability living in South Australia. It provides a gateway to help you to find information about your child's disability and to existing information on programs, services, benefits and payments that may help you to care for your child.
Parenting SA: for other Parent Easy Guides including: Developmental delay, Disability – brothers and sisters, Child abuse, Protecting your child from sexual abuse
Disability Information and Resource Centre
Novita Children's Services
Siblings Australia: for brothers and sisters of children with special needs
Raising Children Network: for information on raising children
Association for Children with a Disability
Women's and Children's Hospital (South Australia) Foundation
ShineSA (Sexual Health Information, Networking and Education, South Australia)
- Many fact sheets relevant to all young people, including information for people with a disability (search 'disability').
Written in partnership
Women's and Children's Health Network - Parenting SA
Related Parent Easy Guide (Parenting SA website - PDF format)
The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Parent Helpline on 1300 364 100 (local call cost from anywhere in South Australia).
This topic may use 'he' and 'she' in turn - please change to suit your child's sex.