Even if you have had a ‘gut’ feeling finding out your child has a disability can be emotionally overwhelming. This discovery can happen in pregnancy, after birth, as they grow or after an accident.
There may be challenges ahead but seeking support early and understanding more about the disability or impairment can be helpful. Some families say having a child with disability has taught them to value and appreciate life in a whole new way.
What is disability?
There are many different ways to define disability, but generally it is any condition or impairment of the body or mind that makes it more difficult to do certain activities and interact with the world.
People and places can heighten or lessen a child’s sense of their disability. If both are actively inclusive and supportive your child can participate and enjoy the space, activity or event with less impact of disability.
Dealing with the diagnosis
When you first realise your child has a disability you may feel shock, disbelief, anger, blame, guilt, sadness or a mixture of feelings. You may question why it has happened and worry about what the future holds for you, your child and family.
These feelings are normal. Speaking to your GP, supportive family and friends can be comforting and helpful.
How you cope with your feelings can be influenced by:
- how well the diagnosis was explained to you and how it may affect your child now and in the future
- your current understanding of people with disability and experience with disability services
- how your partner, family or others react to the diagnosis
- how much support you have from family, friends, support services, cultural or religious groups
- how your child’s support needs may affect your family, work and social life.
You have the right to expect the same standard of health care and support for your child with disability as for any other child.
Your needs and rights
As a parent you are within your right to:
- expect you and your child to be treated with respect, dignity and privacy
- be given an explanation about the underlying cause of your child’s diagnosis, if there is one
- be informed about how your child’s condition or impairment may impact them and what sort of support they may need
- be involved in their daily care and shown how you can help
- ask how you can best support your child
- seek opinions from a range of professionals
- take time for self-care and/or respite
Supporting your child's needs and rights
Children with disability have the same need as all children to lead a positive and happy life.
Understanding and meeting your child’s needs can be more difficult and demanding than for a child who is non-disabled.
For children to feel loved, supported and encouraged
- to feel care for and valued
- to be supported to do some things for themselves
- opportunities to make choices for themselves. This can provide a sense of independence and control in their lives.
Children with disability have the same rights as all children. They have the right to:
- be treated with respect, dignity and privacy
- access to good healthcare, education and opportunities to participate in their communities
- achieve as much as they can
- be valued as a person
- play, socialise and develop friendships.
They also have the right to:
- be informed about their disability in a way they can understand and know how to talk about it
- have a say in their day to day care and treatment
- ask any questions about their diagnosis, care and treatment
- support to feel good about themselves within the wider community.
Seeking support early from services can be helpful for you, your child and the wider family.
Relationships in your family
Spending time with your child can help build a strong relationship. Playing, reading stories, drawing, going to the park or listening to music together can strengthen your connection. Children love to be part of your everyday world (even chores!), so talk to them about what you are doing and let them be involved where they can. If you child doesn’t use spoken words spend time observing their body language, facial expressions and any noise or actions they make to communicate. You’ll be amazed at how much you can learn by being with and observing your child. Be patient, give them time to start a conversation. Provide opportunities so they can contribute meaningfully. Encourage them to feel good about who they are by openly talking about, but not always focussing on, their impairment.
Strong family relationships
Families that have a child with disability can experience additional challenges. This can cause stress and put pressure on relationships. Finding ways to manage and avoid feeling overwhelmed will benefit the whole family. It can help to:
- share your feelings with your partner and listen to how they feel. If you are a single parent talking to family, friends or services can be supportive and reenergising
- share daily tasks where possible to create a sense of a team
- make time to spend together. It is also important to take some time for yourself
- remember to spend time with your other children - they need your love and attention too
- celebrate the little things as a family.
Extended family and friends
Grandparents, other extended family members and trusted friends may be good sources of support for your family. However, some people may not understand the impact of the impairment or disability. They may find it hard to accept due to their own feelings of grief and loss. They may feel worried about your child’s future and any extra stress parenting a child with disability may bring for you. Don’t forget you are their daughter/son/sister/brother/friend and they care about you too.
Give them time and space to process their feelings. Encourage them to learn about the disability or impairment and ways you can help each other. You may need to clearly explain what grandparents or others can do to best support you and your child. Remember some family or friends may not be able to provide the support you need.
If family members or friends have cultural beliefs that make it hard for them to accept and understand the disability, encourage them to talk to a community leader. They may benefit from talking to a support service. The services listed on the back of this Guide are a good place to start.
It can help to find a support group of parents with similar experiences. Keep up contact with supportive family and friends.
Supporting children to learn
For many children with disability everyday activities can be challenging. Learning what your child is able to do is a great starting point. They will have strengths and interests as other children do. Supporting these will help your child grow, develop, feel capable and gain confidence.
- demonstrate and communicate tasks step by step. This gives your child something to follow as they watch what you are saying match what you are doing. eg ‘see how I am’
- assist your child with basic tasks until they master them. You are helping to develop independence and confidence
- show your child you have faith in them and they are not alone in their learning or managing the disability
- support and affirm who they are and what they can do.
- Useful things to think about:
- there may be times when your child is upset or frustrated. Try to reassure them and acknowledge they are learning a new skill. It may be hard but give them the chance to try without rushing in too soon to help
- if there are worries about your child’s ability to undertake tasks it might be helpful to contact an occupational therapist - they can suggest how best to engage with your child to continue developing their skills at home
- while your child will benefit from support and encouragement, allow them to learn and develop at their own pace. Try not to compare them with others.
Safety and your child
Parents do their best to ensure their child is never in an unsafe situation. While it’s important to protect children we can’t be there all the time. As they grow, helping your child learn safety rules to the best of their ability can help manage situations in which they feel uncomfortable or unsafe.
Teach your child about keeping safe around fire, water, electricity, pets, swimming pools, phone calls, knocks at the door and online. Other aspects of safety include:
- how to keep safe at home and stay within safe boundaries
- taking medicines (when, who from, how much)
- how to stay safe when using roads, footpaths or public transport when shopping or visiting other places.
When they are developmentally able, show your child how to use a mobile phone and landline. Teach them important phone numbers and help them learn their home address. You may even like to practice using a phone to contact someone.
Unfortunately, children with disability are more at risk of being abused than non-disabled children. You can help reduce the risk for your child by teaching them about personal space and consent.
As far as your child is able, it is important to have some understanding about their own bodies, privacy and how to tell others if something worries them or feels unsafe.
Help them to understand:
- what being unsafe might feel like in their body (butterflies in their stomach, twitchy hands, racing heart, feeling sick)
- their body is private and no one is allowed to touch the sexual parts of others
- how to say ‘No’ if someone makes them feel scared, sad or uncomfortable
- ‘secrets’ are to be shared with a trusted adult, even though it may upset someone
- who they can talk to if they feel unsafe or have any concerns.
It can help children to teach them the correct names for parts of the body so they are better able to communicate about them. Helping your child develop their eating, dressing, hygiene and toileting skills will contribute to their independence.
Many children with disabilities go to mainstream childcare centres, preschools and schools. This is a large part of their lives and it’s important they are enjoying it and learning.
Children with disability are entitled to personalised learning support as outlined in the Disability Standards for Education. These Standards ensure students with disability have the same opportunities and choices as student without disability. They require schools and other education providers to consult with students or their parents/carers regarding any required supports or adjustments to the learning program or environment.
What parents can do
- Check out the service or school first and make sure it’s right for your child. If possible take them with you when you visit.
- Ask about extra resources from education, health or other agencies, eg support staff, suitable desks, quiet spaces, wheelchair ramps.
- Help your child learn to manage their own clothes and needs as far as possible so they can be independent.
- Find out what school activities your child can take part in, eg drama, music, outings. This can also include lunchtime programs or groups. Being part of things can make children feel happier and more confident.
- Communicate openly with the school to help them understand strategies that have worked well at home and things that have not been so successful.
- It may help to have a health professional come to the school and talk to the children and staff about your child’s disability and how they can engage respectfully.
- Where possible, try and arrange medical appointments during the school holidays so your child doesn’t miss out on school events or activities.
Remember that having a disability should not exclude your child from participating in activities at school.
Communicate openly with teachers so any issues can be sorted out early and successes shared.
All children benefit from having friends. Empower your child to be more comfortable with who they are and to make friends with those who share common interests. Look for age-appropriate activities.
Make sure your child knows what bullying is and to tell you or another trusted adult if it is happening. If they do experience bullying:
- take action to keep them safe
- ask your childcare centre, preschool or school what practices they have to manage discrimination and bullying - most have anti-bullying policies
- ask what steps they will take to ensure your child’s safety and support their health and learning needs.Stay in contact until the problem is resolved
- help your child understand bullying is never their fault. The problem is with the other person
- ensure they know not to retaliate and to seek help. (See Parent Easy Guide ‘Bullying’)
- friends are very important so encourage friendships where you can. Make it easy for their friends to visit your home.
As your child gets older there will be new challenges. Some parents try to keep their child young and avoid new situations. Helping them develop their independence could include:
- involving your child in participating and deciding about their own care as much as they can
- letting them practise being more independent, eg weekends in respite care, trips away, connecting to community groups
- understanding that growing up can present emotional problems for young people. They may find it hard to be a part of the group if they are limited by what they can do
- being aware some young people may need help to cope with sexual feelings and how to express them in an acceptable way
- finding out about options for future care. Transitions like this can take some time to arrange. In addition to your support it may be helpful to see what assistance services can provide.
It may be hard at times to establish a connection with your child. Keep working at it. Don’t give up.
Feelings of grief
A diagnosis usually involves a realisation that things may be different than what you imagined. This can bring feelings of grief and loss. These feelings can (but may not) come back at times through your child’s life, eg if your child is having difficulty making friends, doesn’t meet independence milestones alongside their peers or can’t participate in something due to their impairment. It is very common for parents of children with disability to experience feelings of grief.
If these feelings have not eased over time it may affect the way you care for your chid, other children, yourself and your relationships. Some signs you may need help with your grief can include:
- not coping with daily life, finding it difficult to get out of bed
- over time not being able to see anything good about your child’s life
- not feeling able to accept your child as they are
- not being able to ‘get away’ from negative thoughts about the diagnosis or memories of the incident that caused the disability
- continuing to feel angry, resentful or guilty
- continuing to look for a reason the disability happened, after you have had all the possible information
- experiencing physical symptoms of ongoing stress such as headaches or difficulty sleeping.
These feelings can pass after a short time. If they persist for more than a few weeks or are interrupting your ability to do normal activities it’s important to get support. Your GP is a great first point of call.
You don’t have to manage this alone. All parents need support sometimes.
Looking after yourself
Being a parent takes a lot of energy. Parents of children living with disability face additional demands. It can be easy to lose sight of your own needs. Looking after yourself is important for your own health and wellbeing. It can make it easier to support your child and benefits the whole family.
- Ask for help and support.
- Take time to do things your enjoy.
- Find ways to relax and recharge.
- Acknowledge all the ways you are helping your child’s learning, development and self-belief.
- Value your own strengths and try to embrace a positive outlook.
- Be kind to yourself if you feel overwhelmed at times.
- Connect with supportive family, friends, health professionals or parents with similar experiences.
Note: The term ‘Parents’ in this Guide refers to anyone caring for and/or raising children and young people, eg parents, caregivers, step-parents, grandparents, guardians, foster or kinship carers.