Finding out your child has a disability can happen after an accident or illness, at birth or you may find out something is wrong as your child develops. You may feel worried about their quality of life and grief at the loss of dreams for your child’s future.
There are big changes for parents and families to make that can put pressure on relationships and cause stress. Early seek support from professionals, family, and friends or other parents in the same situation will help you and your child.
Quality of life
Quality of life is not about ability, it’s about your child feeling well, safe and comfortable, feeling pride in the things they can do, having happy times, and that they are a loveable person. Every child has different abilities. Children with a disability can bring joy to others, have a joyful life and achieve the quality of life.
When you first realize your child has a disability you may feel the grief that many people feel after a loss. This can include guilt, shock, sadness, blame, disbelief, anger, questioning why it happened to you and your child, and panic or fear that you won’t be able to cope.
These feelings can come back at times through your child’s life as new losses happen like if your child can’t make friends, go to the local school, 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.
Remember many parents feel this way at times. Take time to grieve when you need to. If you have negative feelings towards your child that won’t go away it’s important to get help.
Dealing with grief
Grief can be short-lived but more often it’s a long journey of downs and ups. Even there is hope, there may be times when it seems your grief will never really go away. It’s helpful to realize how far you have come.
Remember the time when you first found out your child had a problem. How did you feel then? How were you coping? 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, your relationships and yourself. If this happens, seek help to work through your feelings.
Your rights and needs
You have the right to expect the same support and standard of health care for your child with a disability as for any other child.
You have the right to say what you want for your child and to be heard. You have the right to an explanation of what has happened and why. You need to hear information about your child’s condition and how it will be managed, and to feel you can have some control of this.
Take care of your health and wellbeing. Make sure you get breaks when you can – caring for a child with a disability can be very demanding. Accept offers of help.