It's normal to feel shocked and upset when your child is diagnosed with a disability or a long-term condition. You may also have feelings of guilt or denial. If you have no experience of your child's condition, you'll probably feel scared and unprepared.
Talking about your feelings can help. It may sound simple, but voicing your concerns and thoughts to your partner, parents or a friend may help you feel less isolated. Some people will struggle with their child’s diagnosis to the extent that they become depressed. If you think you're depressed, consult your GP. You can read about the signs and symptoms of depression in the Health A-Z.
Carer's tip from Netbuddy
"If you have a diagnosis you can find the appropriate support group by looking on the internet or asking help from your health or social worker. Most syndromes run their own specific support groups which you can access on the internet".
Visit Netbuddy to read more carers' tips like this.
Although everyone's experience will be different, it can be reassuring to speak to other parents who have children with the same disability or condition as yours. They're likely to have been through the same emotions and processes as you. Many condition-specific organisations have online forums or message boards for parents. There may also be local groups for parent carers in your area. For more information, see our article about parent support groups.
If you want to speak to an advisor about support services for parent carers, you can contact Carers Direct free on 0808 802 0202 from 8am to 9pm Monday to Friday, and 11am to 4pm on weekends. Or you can email your enquiry to Carers Direct.
Family and friends are also a great source of support. Although they may not have exactly the same experience as you, they'll be able to help you with the practical everyday things that may be forgotten when a new diagnosis is made and you and your child are attending appointments. They could help with the shopping or look after your other children or simply be there for a chat. Any practical support you can get from family and friends will relieve some of the tension and stresses you may be feeling.
Getting information about your child’s condition
Once you have a clear diagnosis, you'll probably want to find out as much about the condition as you can. Only use reliable sources when researching your child’s condition as some websites may contain biased, inaccurate or misleading information, which could be upsetting for you. The health professional involved in your child’s care will be able to tell you where to find good information. They may also have leaflets or DVDs that they can give to you. If you're looking for health information online, look out for the Information Standard mark, which confirms that the information is reliable.
You can also contact condition-specific organisations for advice and guidance on your child’s condition. The Carers Direct helpline can provide contact information on condition-specific referrals, plus contact details of local carers’ centres that can also support you and your family.
After a diagnosis, you may wonder why your child has a disability or a long-term condition, especially if their diagnosis was a complete shock. For example, if there were no complications in pregnancy or if your child hadn’t been unwell.
For many reasons, some illnesses or disabilities can be difficult to diagnose. If you're not happy with your child’s diagnosis or can't be given a diagnosis, you can ask your GP or the healthcare professional looking after your child for a second opinion.
Financial support
Many parents with a disabled child worry about how they're going to cope financially. You may feel that you need to give up work or decrease your hours so that you can spend more time caring for your child. If this is the case, it's worth finding out about any benefits you may be entitled to. If your child has a disability, they may be able to get Disability Living Allowance when they're three months old. This may add a premium to any income-related benefits that you receive, including child tax credits.
If you earn less than £100 a week and meet the other criteria, you may also be able to get Carers Allowance. To see what benefits you could be entitled to, use the Work and Pensions benefits advisor tool or phone the Benefit Enquiry Line on 0800 882 200. Contact a Family also provides advice, information and support to families with disabled children about finances, benefits and debt issues.