Finding out your child has a disability

One in 20 children in the UK is born with a disability. The early days after your child has been diagnosed can be incredibly tough as you try to understand what it means for your family. However mild or severe the disability, whether you were prepared for the news or it came out of the blue, you will need time and help to come to terms with what lies ahead.

The good news is that you're not alone: there’s lots of support out there. Many people find it helpful to make contact with other parents who understand what they’re going through, especially those whose child has a similar condition. You’ll probably be bursting with questions and be full of fear about what the future holds: What’s the prognosis for my child? How will I cope? Who can help me?

Where to go for help

There are organisations available to support families coping with every disorder from autism and Down’s syndrome to rare chromosome disorders and conditions such as phenylketonuria.

Caring for a child with disabilities involves negotiating your way through a maze of new stuff, from working out how to ensure they get the best opportunities in life to claiming benefits you’re entitled to such as Disability Living Allowance, organising respite care and learning which equipment will make your lives easier. Most important of all, you need to believe there is light at the end of the tunnel and take steps – however small – towards it.

The following organisations are here to help

Contact a family will help you find other families in your area. As Isabel discovered, getting in touch with families whose children have similar disabilities to yours can be a lifeline.

KIDS helps children and young people with disabilities to get the most out of life while supporting the whole family.

Mencap helps people with learning disability.

Sense is the UK’s leading organisation for deaf-blind people.

Scope offers support and advice on all aspects of living with cerebral palsy.

The Children’s Trust supports the families of children with acquired brain injury, multiple disabilities and complex health needs.

Whizz-Kidz aims to empower children with disabilities and help them lead a full, fun life.

Read Isabel's logart about her daughter Eve, who has a rare genetic disease caused by a chromosome 14 disorder.

Tell your own story on the Storyboard.

Come and chat on Logarty talk.

Having been through the

Having been through the assessment process with one of my children, this is a really useful list of links!

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