Finding out your child has a disability
Gathering information
When you're working through the emotions that come with being told your child has a disability, you may keep thinking about the need for a cause or a cure. This can make you vulnerable to misinformation. It's important to gather information from a range of sources and explore the options about the disability, as well as the services and supports that are available.
Finding information online
There is so much information online—including helpful resources, and advice from less credible sources. Here are some hints to help you work out whether a website is relevant and reliable:
- Is the website run by a reputable organisation?
- When was the information updated? Is it current?
- Is the information balanced, and does it list benefits and risks of therapies or treatments?
- Is anyone trying to sell products or services? Recognise the difference between 'advertising' and 'information'.
- Refine your search and make it specific to your needs. For example, search for 'my 3-year-old is not talking much' rather than 'speech therapy for 3-year-old'. From these initial results, related links may come up.
- Online parent forums and blogs can be useful, but remember they are personal experiences. Balance these with information from professionals, organisations, governments and academic sources to gain a range of views.
What to do next
Share your internet findings with your GP or health professional. Openness is important. That includes your health professional having an open mind to advances and initiatives. If you find something they haven't heard about, ask them to check into it, rather than ignoring or discounting it.
Keeping records
It's a good idea to keep all of your child's information in a file you can refer to when accessing services. You may like to keep the following information together:
- birth certificate
- original diagnosis details
- medical reports
- pathology results
- therapy reports
- medical and allied health receipts
- individual education plans.
You may also like to keep a file with information about you—such as proof of residency, proof of address and proof of income—in a convenient location.
More information
Information about disability facts and terms, as well as some types of disability—including Down syndrome, cerebral palsy, Asperger's syndrome and spinal injury—is available on Disability Online.
For further reading, the following websites have reliable information on a range of disabilities and conditions.
