Children with a disability

Finding out your child has a disability can happen at birth, after an illness or accident, or 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.

Every child is different with a unique set of needs and abilities. Likewise, each parent will respond in a different way with a unique set of emotions.

It will help you and your child if you seek support early from professionals, family, friends, or other parents in the same situation.

To be the best carer you can be, and to provide your child with the highest quality of life possible, it’s important to understand their needs and your own.

Your child’s needs

In addition to needing special care, your child has a range of emotional needs and rights.

They should have information about what has happened and know the words about their disability.

They need to feel free to ask questions about their condition and to have access to information about their day-to-day care and treatment.

Your child has the right be treated with respect and valued as a person. To feel loved, loveable, safe and comfortable, and to have help in dealing with being seen as different by other people.

They should also be given the opportunity to achieve as much as they can, make friends, and have as much say as possible over what happens to them.

Helping your child to learn

While it may be quicker and easier to do things for your child, teaching them to do as much as they can for themselves is vital to their development and wellbeing.

Children and young people with disabilities can go on learning new basic skills well after other children have learned these things.

Teaching them requires patience, time and encouragement.

When teaching your child new skills, consider the following:

  • only give one suggestion at a time - use short sentences
  • show them how to do things - you may need to do this over and over
  • talk about what you are doing as you do it - eg: dressing them
  • break down tasks into small parts - it can help your child feel capable
  • don’t criticise mistakes - focus on the bits they get right
  • don’t expect too much - your child may get upset and frustrated
  • don’t rush your child - give them a chance to try new things
  • allow them to help you with daily tasks where they can
  • show your child you have confidence in them
  • if you need to, contact an occupational therapist - they can often help with tasks that seem too hard for children to manage.

Safety

It’s not possible to protect your child at all times, so it’s important to teach them as many safety rules as they are capable of learning.

This will take time and patience, along with a lot of encouragement along the way.

Consider teaching your child the following:

  • how to keep safe at home - eg: around fire, water, electricity, pets, answering the phone or knocks at the door
  • to stay within safe boundaries - eg: within your home fence or other areas
  • how to behave while you are shopping or visiting other places
  • to identify what’s safe to eat and what is not
  • to only take medicine given to them by you, or other specified carers
  • how to stay safe when using roads, footpaths or public transport
  • their home address, phone number or your mobile phone number, so they know how to contact you or tell others - they could carry a written copy
  • to identify unsafe or undesirable touching
  • how to use the home phone or their mobile phone to call you or another trusted person, and how to call an emergency number for help.

Try to find the balance between protecting your child and letting them be as independent as they can. All children need the chance to be their best. 

Read more about child safety.

For more information and ideas read the 7 Steps to Safety on the Department of Children and Families website.

Child care and school

Many children with disabilities go to mainstream childcare centres, preschools and schools.

Wherever they go, these places can be a large part of their lives and it’s important they work well for your child. 

Speak to staff well before your child is ready to start. Make sure they know your child’s needs and abilities and can put supports in place.

Some issues can be:

  • wheelchair access and suitable desks or computers
  • the need for additional learning support staff and input from services such as speech or occupational therapy
  • teachers not understanding your child’s condition, needs and abilities
  • your child missing school and losing touch with friends due to appointments or being unwell
  • bullying and teasing.

There are many things you can do to support your child and make their education or child care experience more fulfilling. You could:

  • check out the service or school with your child first to make sure it’s right for them
  • ask about extra resources such as support staff, ramps, or computers
  • help your child learn to manage their own clothes and needs as far as possible so they can feel and be independent
  • find out what school activities your child can take part in - eg: drama, music and outings
  • let all of your child’s teachers know if tiredness, pain or coordination problems make it hard for them to do some tasks
  • arrange for a health professional to visit and talk to children and staff about your child and how they can help
  • where possible, try to arrange medical appointments outside school hours
  • encourage friendships where you can - make it easy for your child’s friends to visit your home
  • keep in regular contact with your child’s teachers. 

Growing up

Many parents of children with a disability have difficultly ‘letting go’ when their child seeks independence at various stages in their development.

However, you can help prepare your child for the process of growing up.

Teach your child about sexuality and keeping safe 

Children with a disability are at a higher risk of sexual abuse.

As far as your child is able, it’s important they have some understanding about bodies and privacy and how to tell others if something worries them. You should:

  • let them practice being more independent - eg: weekends in respite care, trips away, belonging to groups
  • support them in learning about friendships and relationships, including sexual relationships
  • talk with your child about differences they might notice between them and their friends - talk to a health professional if you are worried about their emotional health
  • as they get older, find out about options for your child’s future care while you can still support them through any changes.

Read more about how to protect your child from sexual abuse.

Read the 7 Steps to Safety on the Department of Children and Families website. 

The online world

Using mobile phones, the internet and social networks can be a source of entertainment, support and connection for children and young people with a disability.

Consider the pros and cons for your child - what they gain and what they need to stay safe.

You may need to be closely involved with what they do.

Coping with prejudice and bullying

People with a disability are at greater risk of being teased, bullied or mistreated. To help your child deal with this, you can:

  • 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’s not their fault - the problem is with the other person, not them
  • help your child to play with children who can do the same sorts of things they can so they 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.

Your needs

Caring for a child with a disability can consume your life.

To be the best carer you can be, it’s important not to neglect your own needs.

The following ideas can help:

  • take care of your health - get breaks when you can
  • accept offers of help
  • think of yourself as a partner with professionals - ask questions
  • focus on the things your child can do
  • celebrate small day-to-day successes
  • value your personal strengths for coping, such as a sense of humour
  • keep in contact with supportive friends and family members
  • teach your child to care for themselves
  • let them experience things for themselves, including taking some risks
  • find a support group of parents with similar experiences.

Feelings of grief

When you first realise your child has a disability you may feel the grief that many people suffer after a loss or trauma. This can include:

  • shock
  • disbelief
  • anger
  • blame
  • guilt
  • sadness
  • questioning - why has this happened to you and your child
  • panic
  • fear that you won’t be able to cope.

How well you cope with your own feelings and your child’s disability depends on lots of things:

  • what sense you can make of what’s 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 they cope
  • 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, their religious faith.

Symptoms of grief can come back at different stages during your child’s life as new challenges or losses happen - eg: if your child can’t go to the local school, make friends, or become independent.

It’s important to give yourself time to grieve and get support when these feelings resurface.

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.

Signs of unresolved grief

If your grief does not get better over time it can affect the way you care for your child, 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
  • after time, failure to see anything good about your child’s life
  • inability to accept your child as they are and unrealistic expectations about their abilities and future
  • ongoing anger and guilt
  • persistent searching for reasons, even when you have all the information
  • failure to accept the challenges you and your child are facing.

If you still have any of these feelings after a year or so, it’s worth talking it over with someone.

Your rights

You have the right to say what you want for your child and for it to be heard. You have the right to:

  • 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
  • be treated with dignity - both you and your child
  • a break from caring for your child
  • seek opinions from a range of professionals
  • expect the same standard of health care and support for your child with a disability as for any other child.

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 a disability and not others. It may help to:

  • share your feelings with your partner and listen to theirs
  • share the daily tasks
  • make time to spend 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 a disability.

Read more about siblings of children with a disability.

Grandparents

The support of grandparents can be great for you and your other children. But there can be special challenges when a grandchild has a disability.

Some grandparents may:

  • feel pain for their own child as well as for their grandchild
  • worry about the future
  • not want to accept that the child has a disability - they might act as if it has not happened
  • not be able to give parents the support they need - grandparents are suffering from loss at the same time as the parents
  • blame one of the parents.

You can support grandparents by:

  • sharing your feelings and grief so you can help each other
  • making sure they know about the disability and the treatment available
  • respecting their feelings about what they can do to help - they may feel they have done their child-rearing and want to have time to themselves
  • helping them get support from a community leader, especially if they are from a culture that may find it harder to accept disability.

More information

Find out more, including where you can get support for your child with a disability, on the following pages: 

Copyright

This information was adapted from the Parent Easy Guide series © Parenting SA, Government of South Australia.

Last updated: 18 September 2017