Discovering that your child has cerebral palsy or another physical disability can leave you struggling with a whole range of emotions. Feelings such as grief, disbelief, helplessness and anger can be overwhelming. It’s important to realise that this is only natural and there is no right way to feel about what you are going through.
Often diagnosis does not come until an infant is 12 to 18 months of age. The period leading up to that, when an infant is considered “at high risk of cerebral palsy”, can cause great anxiety for parents as the severity of the disability is not known.
Like many parents you may be concerned about how you will cope caring for your child and how you will manage financially. You may also have many questions about cerebral palsy or just need to talk to someone about how you are feeling.
Cerebral Palsy Alliance is here to help you and your family
We have almost 70 years of experience working with people with cerebral palsy. We are one of the first organisations of our kind in the world. Our evidence based practices are grounded in world leading research and clinical experience.
Our therapy and support teams work to deliver the best possible outcomes for you and your family. Talk to a caring professional. Cerebral Palsy Alliance has a team of social workers and psychologists that are available to provide support – please feel welcome to call to make an appointment.
Here is what other parents say about their journey:
Rachael Banks, mother of three year old Joseph, explains how Cerebral Palsy Alliance has helped her family
Two year old Ruby is the youngest of seven children in the Woodbine family of Raymond Terrace. Her mum, Amber, recognised Ruby was not meeting the milestones her siblings had reached and was not using her left side. Diagnosed at almost one year old, the family sought the help of Cerebral Palsy Alliance.
“I knew nothing about cerebral palsy at first,” said Amber. “We have been just taking it a day at a time. Ruby sees a team of people at Cerebral Palsy Alliance who also teach me what to do at home to strengthen her muscles and make her less stiff. Ruby’s just starting to walk now. We wouldn’t be at this point without Cerebral Palsy Alliance.”
Parent to Parent
Cerebral Palsy Alliance helps parents to connect with a Parent to Parent program. It links parents with a child with a disability living in NSW and the ACT to trained parent volunteers. The volunteers offer empathy and understanding, based on their own experience of having a child with a disability.
Find Others Online
There are a number of places on the web where parents can connect with others.
The Cerebral Palsy Alliance Facebook community offers information and support for people with cerebral palsy and their families and friends.
Livewire is a secure, social networking website for young people with a chronic illness or disability, which also has a lively parent community. It’s free to use and is a place where you can share experiences in a safe and supportive environment.
You can discuss your experiences with other parents on our Forums.
Helping your family to adjust
How does a diagnosis of cerebral palsy affect a couple’s relationship?
For most parents, discovering that their child has cerebral palsy presents many unexpected challenges to their relationship. You may feel that one of the hardest parts is coping with all of the information you need to absorb and the many decisions you must make.
At the same time, you and your partner may have completely different ways of handling the diagnosis. It can be very stressful to have to manage your own emotions while trying to understand your partner’s response.
To help you manage these challenges, you may like to consider the following suggestions:
Be kind to yourself
Coping with your new life may leave you with many complex and often overwhelming emotions. Remember that there is no right way to feel about things. Be kind to yourself and acknowledge that you are doing the best you can – for your child, your partner and your family.
Re-evaluate your expectations
As the parents of a newly diagnosed child you may find it useful to reconsider your expectations of each other with regard to day-to-day life. Talking through and negotiating issues such as household responsibilities, the level of involvement with your child, and the availability of free time may help to ease family stresses and strains.
Talk it over
Most parents say that clear communication is the key to coping with the many changes they face in their new lives. While arguing and conflict is typical of any relationship, taking time out to talk through worries and fears can help a couple find ways to move forward and deal with their concerns.
Listen to one another
You and your partner may react to problems in different ways, so being prepared to openly discuss your needs and wants can be really helpful. Simply hearing each other out – and accepting where ‘each other is at’ – will help both of you feel valued and supported.
Make time for yourself
Having time away from the responsibilities at home is very important and you should try not to feel guilty about taking a break. Discuss with your partner how you would like to spend your free time and how you can best support each other in taking time out. Finding a private time to just talk to your partner or a close friend can also help you to maintain your well-being.
Dealing with concerned family and friends
Dealing with concerned family and friends can also be daunting because you may find yourself having to support others once they receive the news while you are still overwhelmed.
Having a child with a disability affects every member of your family, including your other children. Their lives may change significantly, and they will need your guidance and understanding as they deal with a wide range of often conflicting emotions.
Although it can sometimes be difficult for siblings of children with a disability, there are many strategies you can use to help them through the tough times. Here are some things you can do to help your other children.
Always use positive language
Your child with cerebral palsy might achieve milestones at a different pace to your other children. This may mean siblings can find it hard to understand why their brother or sister can’t keep up with them or move as quickly. It’s important to acknowledge this difference, but explaining it in a positive way can be helpful. For example, “Your sister may not move as fast, but she really wants to stay close to you”.
Discuss the future
Siblings may feel afraid of what the future holds for their brother or sister with cerebral palsy. You can help ease their fears by discussing what is likely to happen to their sibling and how you would like them to help you. Try to be both realistic and positive about the future to help them build a resilient outlook.
At various stages throughout their lives, you may find your other children have questions about their brother or sister and need help to make sense of what is happening. Invite questions, and answer them honestly and in a way your children can understand. Likely questions include, “Did I cause it?”, “Will I catch it?” and “Will it go away?”
Encourage them to talk about their feelings
Siblings of a child with a disability may feel very isolated as their friends may not be comfortable with their brother/sister. They may also feel reluctant to speak up about their own needs. Let them know it’s natural to feel they way they do. Talking to your children about their feelings in this way will help them feel listened to and important.
Offer strategies for handling others’ reactions
Siblings are often painfully aware of people who stare at, point out, or speak inappropriately to their brother or sister. It can be helpful to work out a strategy with your children about how to manage these situations. For instance, you can help them figure out how to talk about their sibling and how to respond to others’ reactions. You can also explain that sometimes people say hurtful things because they don’t understand disability.
Deal with challenging behaviour fairly
Occasionally a child with a disability can behave in a hurtful or aggressive way. Their siblings may feel bad about telling others when this behaviour is directed at them. Many parents find that family rules based on love, limits and fairness help to encourage responsibility in their children while allowing for special needs.
Support their interests and activities
If your other children help care for their sibling, it may have a significant impact on their lives. Assisting with their sibling’s routines or filling in for you when needed may often leave them with little time to play, socialise and just be themselves. Be aware of this. Whenever you can, encourage your children to take part in outside activities and make a point of celebrating their achievements.
Spend time with your other children
Nourishing your relationship with your other children is important for your family’s well being. If you can, try to find a trusted carer or support service that will allow you to spend some time with your children doing activities they like. Encourage them to loosen up and have fun – even be a little silly yourself!
Rename the disability
Disability is often viewed in a negative way in our world. Siblings can really benefit from parents helping them to rename the disability using fun, creative and respectful words. For example, you could refer to sign language as “sweet signing”. As your children get older you might find that providing them with diagnostic definitions helps them to better understand the nature of their sibling’s disability.
Share information with carers and teachers
Share information about your family situation with teachers, child-care staff and other adults with whom your other children might be involved, so they can deal with your children more sensitively.
Telling grandparents your news
After you receive the news that your child has cerebral palsy there comes a time when you need to tell family and friends – including grandparents.
Working out how much information you should share with loved ones – while working through your own responses – can be very challenging. You may find that concerned relatives are constantly asking you how your child is doing or you may find that some family members withdraw and ask nothing for fear of causing upset. Others may respond to your news with what seem to be thoughtless responses.
Dealing with these reactions can be very stressful. But it can be helpful to recognise that your family will have their own emotional responses to the news that may be quite different to your own. Often, misunderstandings occur because people simply do not know how to help.
When telling family your news, you may find it useful to consider some of these suggestions:
Try to share the emotional burden
Your family may react to your news with a range of emotions that include shock, denial, anger, concern and sadness. This means you may find yourself not only dealing with your own reactions, but also supporting other family members. Sharing your emotional burden with a relative or friend who has a positive attitude can be a real help.
Tell People how they can help
Sometimes relative respond by being overprotective. It can be really difficult to help everyone find a balance between smothering your child with attention and encouraging them to feel they are a contributing member of the family. Letting people know how they can help you will make it easier to achieve this balance.
Realise that hurt may be unintentional
Reactions from family can sometimes be unhelpful and distressing, and it’s important to let relatives know that they have upset you. But your loved ones may not have intended any hurt. They may simply be unfamiliar or uncomfortable with the situation and need time to make their own adjustment.
Educate your family and friends
At other times, hurtful comments may be due to a lack of knowledge about the nature of disability. You may find it helpful to talk to family members about the misconceptions that surround disability, as well as the new therapies and medical interventions available to your child.
Cherish supportive family members
You may find that some relatives react very positively to the news by understanding your need to tell the information at your own pace. Supportive family members will also relate to your child simply as their grandchild, nephew or niece – not as a child with a disability. Having family around you who share your excitement about every step forward your child takes can be a great comfort. Let them know how much you appreciate them.
Working with health services and other professionals
You know what’s best for your child
When you first receive a diagnosis of cerebral palsy you will begin the process of talking about your child’s healthcare needs with professionals.
At first, you may feel overwhelmed by the amount of research you have to do to make confident decisions about services for your child. Simply figuring out what support services are available and how the health system works can be challenging.
There are many different people who can help you and your family: general practitioners, paediatricians, physiotherapists, occupational therapists, speech pathologists and social workers. It can be daunting to have to work out which is the best service, practitioner and therapist for your child and family.
You may also find that your child’s needs change over time. At various stages, your family may prefer to work with just a few health professionals; at other times, you may decide that a coordinated team is a better choice.
While there will be many challenges ahead, it’s important to remember that you are the best person to decide what is appropriate for your child as your love, dedication and knowledge make you the natural expert on your family’s wellbeing.
Choosing health services and professionals
You may find it helpful to talk to people and organisations in your community for advice. These can include:
- Cerebral Palsy Alliance is here to help you negotiate the many services and options available to you
- Your doctor – can direct you to disability service providers in your area
- Parents of children with a disability – can give you invaluable advice based on first-hand experience of health professionals.
Tips from other parents
General tips for working with health professionals
- Trust your instincts – You know your child best, so trust in yourself when choosing services for your child and the way they should be provided. Look around until you find health professionals you feel comfortable with and who will offer you relationships based on trust and respect.
- Find a health professional who suits you – If you’re not happy with your doctor or health professional, you can choose or ask for another.
- Ask for copies of reports to be sent to you – Start your own file so you can keep track of your child’s medical history.
- Recognise that not everyone is an expert – Don’t be surprised if doctors or other mainstream health professionals do not know a lot about your child’s disability.
- Know when you have done all you can and rest – Doing what’s best for your child means you need to look after yourself as well.
Preparing for your first meeting with a health professional
- Do some research – Read as much as you can about the disability on the web, library or other sources. Find out which are the best, evidence-based practices and therapies.
- Make a list of your questions – Write everything down and bring the list with you to the meeting.
- Bring all of your child’s paperwork – The health professional may know very little about your child’s case so take along all the information you have. This might include referral letters, assessment information and medical reports. Before the meeting, you may also want to write down your own notes on your child’s behaviours, e.g. sleeping, feeding and movement, as well as medical issues like seizures and breathing problems.
- Be clear about the purpose of the meeting – Your appointment may involve a number of people, so make sure you understand what everyone expects to get out of the meeting and how long it is expected to take.
- Figure out what you want to achieve – Let the health professional know what you want from the meeting so they can better meet your needs.
- Take a support person with you – They can help you compare notes after the appointment.
- Don’t be afraid to ask questions – Expect to answer a lot of questions, but also be mindful that you have a right to ask anything you like. A good health professional will understand that you may have a long list of questions.
- Ask for explanations – If you don’t understand something, ask the professional to explain it again.
- Take notes – Appointments and meetings can cover a lot of ground, so notes will help to remind you of exactly what took place.
- Be clear about follow-up actions – Make sure you leave the appointment with a clear understanding of what further actions both you and the health professional need to take.