Children with a disability

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The text for this topic is copyright Parenting SA, Government of South Australia.

Finding out that your child has a disability, whether at birth, or after an illness or accident is one of the most shattering things that can happen to parents. You may go through all of the emotions that people feel after a major loss—the loss of the child you expected to have, the loss of your dreams for your child’s future, the loss of your child’s quality of life, the loss of your way of life. When these losses happen unexpectedly there is the added shock of things going wrong at a time of life when you expected everything to go well. There are such big adjustments for parents and families to make that it is no wonder it causes stress and puts pressure on relationships.

Every child is different and every disability is different so how you cope will depend on your own particular situation. There are differences in the kind and severity of disability. There are also differences in the experience of grief and ways of coping. Families can have children with similar disabilities but learn to cope very differently depending on their own situations, finances, the support they get from other family and friends, and the sort of people they are.

Quality of life

Quality of life is not about ability—we all have different abilities. Quality of life is about your child feeling well, being safe and comfortable, having experiences to enjoy, feeling that she is a lovable person, and having some things that she can feel proud of being able to do. Children with a disability can lead positive, happy lives and bring joy to themselves and other people.

Your feelings

At first you may go through the stages of grief that everyone experiences after a loss. These can include shock, disbelief, anger, blame, guilt, sadness, questioning of why it happened to you and your child, and panic or fear that you will not be able to cope. These feelings can (but may not) come back at different stages through your child’s life as new losses happen, for example, if your child is unable to go to the local school, make friends, or become independent. So while you can achieve some healing, it is not just one loss but a loss that happens over and over. Take time to grieve when you need to. You do not have to bear this burden alone as there is much help available in the community.

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

These include:

• 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
• the amount of support you have from family and others
• the relationship you are able to build with your child
• the quality of life your child is able to have
• the effect it has on your family life
• the effect it has on your working life
• for some people, support from their religious faith.

If you do not feel able to love your child, it is important to get professional help. It will benefit both you and your child. (Remember all parents feel this way occasionally.) Sometimes parents try not to care too much about babies who may die, in order to prepare themselves, and this can make it harder if the child lives.

Sometimes it is hard to realise how far you have come in healing. Think about when you first found out your child had a problem. How did you feel then? How were you coping? Then think about how you feel and are coping now. You might find you have come a long way.

Grief that does not heal

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 it is important that you get help to work through your feelings.

Some signs that grief is not resolving include:

• if you are stuck with memories of the crisis and can’t seem to get away from them
• if you can’t really accept your child as he is, but still believe that he will have great achievements in ways that he cannot
• if you continue to be very angry or feel very guilty
• if you are still looking for a reason why it happened, after you have had all the possible information
• if, after time, you still cannot see anything positive about your child’s life
• if you cannot 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 is worth talking it over with someone.

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.

Parents’ needs

This is your child and you have the right to say what you want for your child and to be heard.

Here are some of the rights you have.

• To go through the process of looking for a cure if you want to, even if your doctor says there is nothing that can be done. If your doctor does not support you in this, then maybe you need to try a different doctor. (However if you feel the need to keep on looking when you have had the same news several times, you may need help to move on so that you can best care for your child rather than looking for a ‘cure’).
• 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.
• For your child and you to be treated with dignity.
• Privacy.
• A break from caring for your child.
• You may find a support group of parents with similar experiences helpful.

What your child needs

• Information about what has happened and what is going to happen in day to day care and treatment.
• To be able to ask questions.
• To be treated with respect.
• To know the words about his disability.
• The opportunity to achieve as much as he can.
• The opportunity to have as much say as possible over what happens to his body.
• To be valued as a person.
• The opportunity to have friends if possible.
• To be helped to deal with being seen as different by other people.

Relationships in your family

Having a child with a disability can put stress on the parents’ relationship. It is important to take time to care for your relationship for your children’s sake as well as your own. It is easy, especially at first, to be so overwhelmed by the challenges that you end up devoting all your time and energy to your child with the disability and neglect other family relationships. Investing time in the other relationships in your life is just as important to the child with the disability as it is to care for that child.

• Share your feelings with your partner and listen to his/hers.
• Share the daily tasks. This can be as important as the emotional support—it says ‘we are both in this together’.
• Make regular times together with your partner—this may seem hard to do but it is very important.
• Do not forget about your other children. They have as much right to your love and affection as your child with the disability. Spend time with them so they won’t feel ignored and unhappy or ‘act out’.

Grandparents

The support of grandparents can make a great difference. However there can be special challenges when the grandchild has a disability.

• Sharing feelings and grief so you can support each other will usually help parents and grandparents. Grandparents can be a very real support to you and often to the other children in the family. The emotional support that grandparents can give can make a great difference.
• Grandparents feel pain both for their own children and their grandchild and may worry about the future. They may not want to accept that the child has a disability and act as if it has not happened to try to avoid the pain.
• Grandparents are suffering from the loss at the same time as the parents, and may not be able to offer parents the support they need.
• Sometimes grandparents may blame one of the parents—especially the mother. Grandparents may feel that they have made their contribution to child rearing, and want to live their own lives, but now feel obliged to help.
• Make sure grandparents have information about the disability and the treatment available.
• Respect the grandparents’ feelings about what they can reasonably do to help.
• Grandparents from some cultures may find it harder to accept disability. It might then be helpful 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.

• Choose childcare, preschool and schools with written standards and practices to deal with discrimination and bullying. Ask what the standards are and how they work in practice before you enrol your child.
• Give your child information about her condition so she can answer questions openly and clearly.
• You might ask the teacher for the opportunity 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 that she can (even if she is in a ‘normal’ school) so she can develop 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 these ideas with her.
• Let your child know that if she is being bullied it is important to tell an adult.

Investing time in the other relationships in your life is just as important to the child with the disability as it is to care for that child.

What parents can do

• Take care of your health. Make sure you get breaks when you can—caring for a child with a disability can be very demanding. Accept offers of help.
• Think of yourself as a partner with professionals. Ask questions: ask what you can do to help, ask what else might be available to you and your child.
• Try to focus on the things that are positive about your child—what he can do, rather than what he can’t.
• Try to let go of worries about the future and think about the day to day small successes.
• Value your own personal strengths for coping, especially a sense of humour.
• Make the effort to keep in touch with supportive family members and friends.
• Try to find the balance between protecting your child and allowing him to be as independent as he can. All children need the opportunity to be the best that they can.
• Have faith to let your child experience some risks.

Teach your child about caring for himself

It is often easier and much quicker for parents to do things for children with a disability, rather than to teach them to do things for themselves. However being able to do things for themselves (even small things) is one of the ways children learn to feel capable and good about themselves. Children who have a disability have fewer things they can do than other children, so it’s worth the effort and time to teach them to do what they can. Some things to remember about teaching children to care for themselves.

• Show your child how to do things. You may have to show them over and over. Talk about what you are doing as you do things with your child, for example, dress her.
• Use short sentences and only give one suggestion at a time at first.
• Break down tasks into small parts so your child gets a sense of being capable even before she can do the whole thing. Help your child to learn one step at a time. For example, pulling up her pants may be the first step that she can be proud of towards toilet training.
• Try not to criticise mistakes. It is much more helpful to be encouraging for the bits your child gets right. Just try again when things go wrong.
• Don’t expect too much. If your child is getting upset and frustrated, maybe you are expecting too much. On the other hand give the opportunity to try things without rushing in to help too quickly.
• Allow your child to help you. Everyone feels better if they feel they can contribute. Find things your child can do to help. Even if she just holds the bowl while you peel the vegetables, let her see that you appreciate her help.
• For children with a disability an occupational therapist can often help with tasks that seem too difficult to manage.
• Have faith in your child—and show her that you have faith in her.
• Children and young people with disabilities go on learning new basic skills well after other children can do the same things. Even as teenagers and young adults, they go on learning new basic skills.

Teach your child about safety

All parents want their children to be safe. If your child has a disability you might want to be especially careful if your child is not as able as other children to keep himself safe. Many parents try to look after their children so well that they never leave them in an unsafe situation. It is important to protect children but you cannot be there all the time. As they get older, it is important to teach them how to keep themselves safe as far as they are able to.

Even if they can only learn a few rules about safety it will help them, and help you to worry less. Teaching children who have problems in understanding needs time and patience. Try to teach them rules for what to do to keep safe rather than teaching through fear of what might happen to them. Give lots of encouragement with each small step that they learn along the way.

Some things you can teach about safety.

• Make sure your child always carries his phone number and address.
• Teach him how to use the phone if he can, and how to call an emergency number for help.
• Teach him what is safe to eat and what is not—this includes medicines. You may be able to teach your child by playing a game of what to eat and what to say ‘no’ to. For example: ‘Can you eat soap?’… answer ‘No’. ‘Can you eat carrots?’… answer ‘Yes’. When it comes to medicine you might want to make a rule that your child can only take medicine if you (or a named person) give it to him.
• Teach your child about not going with strangers, about unsafe touching, about child abuse, about road safety, about fire etc, according to what he can understand.

Your child at school

Many children with disabilities now go to ordinary school, but whether they go to ordinary school or special school, schooling is a large part of their lives and it is important that it works well for them.

Some school difficulties can be:

• not having structures in place, for example, ramps for wheelchairs, suitable desks or computers
• teachers not understanding the condition
• missing school and losing touch with friends, because of the disability
• having to spend a lot of ‘free’ time catching up with work
• bullying and teasing.

What parents can do

• Check out the school first and make sure it is suitable for your child. Take your child with you.
• Check with the school about extra resources which might be available for your child from education, health or other agencies, for example, support staff, computers, ramps etc.
• Help your child to learn to manage her own clothes and needs as far as possible so she can feel and be independent.
• Find out what school activities your child can take part in, for example, drama, music and outings. (Being part of things can make children feel much happier and more confident.)
• Talk to the teachers so they understand your child’s needs and abilities. Let the teachers know if tiredness or pain or coordination problems make it hard for her to do some of the tasks. All her teachers need to know about this, not just classroom teachers. Support from teachers is very important.
• Keep regular contact with the teacher so that any problems can be sorted out and you can both share successes too.
• It may help to have a health professional come to the school and talk to the children and staff about your child’s health problem and how they can help.
• Try to arrange health/medical appointments during school holidays so your children miss as little school as possible.
• Friends are very important for your child so encourage friendships where you can and make it easy for your child’s friends to visit your home.

Growing up

As your child grows up there will be new challenges to face. Some parents try to avoid these by keeping their children young and avoiding new situations. You can help prepare for the process of growing up and the ‘letting go’.

• Teach your child about sexuality and keeping safe. Young people with disabilities usually have the same sexual feelings and needs as other young people. Some may need more help to cope with them and express them in an acceptable way. They may also be at more risk of abuse. Teach them to say ‘No’.
• Involve them in making decisions about their own care and taking responsibility for it as much as they can.
• Give your child practice in doing things independently where possible, for example, weekends in respite care, trips away, belonging to groups.
• Adolescence can present emotional problems for young people, as they may want to be part of the group but find it impossible, or have many limits on what they can do. They will realise more and more the differences between them and their friends.
• Find out the options for future care and try to arrange for future living plans while you are still able to support your child through the change.
• If you have devoted a lot of years to caring for your child, think about where you can spend that energy and interest from now on. There may be some grieving about these changes, as well as positive new directions.
• Most services encourage continuing family contact either by day or with overnight stays. Apart from not losing contact, it allows you to help staff continue your child’s care as it was at home.
• Services that have supported your child may appreciate some voluntary help. You may want the chance to get back into the workforce, or you may take up a hobby you didn’t have time for before.

Reminders

Want more information?

Therapy ACT www.dhcs.act.gov.au 13 34 27

 
See other ParentLink Guides:

• Developmental delay
• Disability - brothers and sisters
• Child abuse
• Protect your child from paedophiles

ACT Govt Publication No 07/0706 July 2007