Children with a disability
child; teenager; young; person; disability; disabilities; handicap; grandparent; prejudice; safety; mental; retardation; social; skills; school ;
Finding out your child has a disability can happen at birth, after an illness or accident or you may find out something is wrong as your child develops. You may feel grief at the loss of dreams for your child’s future and worry about their quality of life.
There are big changes for parents and families to make that can cause stress and put pressure on relationships. It will help you and your child if you seek support early from professionals, family and friends or other parents in the same situation.
The content of this topic was developed by Parenting SA A partnership between the Department for Education and Child Development and the Women’s and Children’s Health Network. (South Australia)
Ph: 08 8303 1660
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 and 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.
Every child has different abilities.
Children with a disability can have a joyful life, bring joy to others and achieve quality of life.
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 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:
- 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
- encouragement, respect and privacy
- for you and your child to be treated with dignity
- a break from caring for your child.
- to seek opinions from a range of professionals.
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 him
- 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.
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.
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. Don’t put too much responsibility on them. There is a topic Disability - brothers and sisters.
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.
- Make sure grandparents know about the disability and the treatment available.
- They may feel they have done their child rearing, and want to have time for themselves.
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. Most have anti-bullying policies.
- Help your child understand it is not their fault. The problem is with the other person, not them.
- 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.
- Make sure they know not to retaliate, and to tell you, their teacher or another trusted adult. Seek help for them yourself.
Keeping children safe from sexual abuse
Children with a disability are at a higher risk of sexual abuse. As far as your child is able, it is important that they have some understanding about bodies and privacy and how to tell others if something worries them. Help them to understand:
- their whole body is private and no one is allowed to touch the private sexual parts of others
- how to say ‘No’ when someone makes them feel scared, sad or uncomfortable
- that ‘secrets’ are to be shared, even though they might upset someone.
It can help to teach children:
- the correct names for parts of the body so they are better able to communicate about them
- rules about privacy
- to be as independent as possible in dressing, hygiene, toileting and eating
- to tell you or another trusted person if they feel unsafe or uncomfortable.
Using mobile phones, the internet and social networks can be a source of entertainment, support and connection with others for children and young people with a disability. Consider the pros and cons for your child - what they would gain and what would be involved in keeping them safe. You may need to be closely involved with what they do. Talk with them about who they are in contact with and not sharing personal information. See the end of this topic for sources of advice about online safety, and Parent Easy Guide ‘Cybersafety’.
As your child grows up there will be new challenges to face. Some parents try to avoid these by keeping their child young and avoiding new situations. You can help prepare for the process of growing up and ‘letting go’.
Involve your child in deciding about their own care as much as they can.
Let them practise being more independent, e.g. weekends in respite care, trips away, belonging to groups.
Growing up can present emotional problems for young people, as they may want to be part of the group but find it hard, or have many limits on what they can do. They will realise more and more the differences between them and others. If you are worried about your child’s emotional health talk with your doctor or health professional.
Be aware that some young people may need help to cope with sexual feelings and how to express them in an acceptable way. They may need support to deal with friendships and relationships.
As your child gets older, find out about options for their future care. Transitions like this can take some time to arrange, and it’s good if your child has your support to adapt to changes.
- 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 A free counselling service for children and young people aged 5-25 years, by phone, email or web
- Disability SA: Tel: 8415 4250 1300 786 117
- Department for Education and Child Development
Special Needs Education Helpline Phone 1800 222 696
Special Education Resource Unit Phone 8235 2871
Booklet ‘A guide to protecting children and young people with disability and preventing sexual abuse’
- 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.
Phone 1800 889 997 Support groups for anyone caring for a child with a disability or chronic medical condition www.mytime.net.au
Carers SA Support
for people caring for someone with a disability or other chronic conditionhttp://carers-sa.asn.au
Support for specific conditions
ThinkUKnow For information about online safety
Phone 1300 794 584 For information about sexual health, including for children and young people with disabilitieswww.shinesa.org.au
Parenting and child safety
Parenting SA A partnership between the Department for Education and Child Development and the Women’s and Children’s Health Network. (South Australia)
Ph: 08 8303 1660
Parent Easy Guide 60 Children with a disability
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.