How can I come to terms with the diagnosis of disability?
How does a disabled child affect a family?
What benefits and services are available to families with disabled children?
Who can I contact for more information?

How can I come to terms with the diagnosis of disability?
Disabled children are very rare, and the diagnosis or birth of a disabled child is an unexpected event which will alter your life forever. But for many people, it is not a tragedy.
"It's like a trip to Holland" says Emily Perl, a mother who chose to keep her disabled child.
Read her testimony.

It is important to know that you didn't do anything wrong that led to your having a disabled baby. Worrying about how it happened and why it happened can bring distress to you and your baby. Feelings of guilt may prevent you enjoying your pregnancy. You may have some extra monitoring during pregnancy. But you should be able to carry on a normal pregnancy and you can still feel proud and happy to be expecting a child.
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How does a disabled child affect a family?
Any child born brings a new dynamic to a family. A disabled child can add a new and different dynamic. Coping with the stress and difficulties of disability can be hard.

People often believe that having a disabled child is something they just couldn't cope with. There is a frequent belief that being a parent of a disabled child takes a special person and many people don't feel they have this special quality within them. Every parent of a disabled child starts out with these beliefs, yet time and time again, parents find the strength and resources to survive and succeed.

Disability varies from minor problems or differences - such as cleft lip and palate or other minor deformities - to major diseases from which children may die early in life, or which may limit their ability to interact or live independently. For children and adults who need a lot of support, the opportunities may still be quite limited. Where a child is disabled, one parent may have to give up work to provide the necessary support and care. Together with the extra costs caused by some impairment, this may have negative impact on the family income. Parents continue to be the main providers of care for their adult disabled children in many cases, despite new schemes to offer independent living for disabled adults.

Having a disabled child can bring pleasure and joy, but also responsibility and anxiety. This may affect other siblings, as well as parents and other carers. Having a child with special needs may sometimes be a little having a child who is exceptionally gifted. They may require special treatment; they may need to be taken to appointments or activities; they may require equipment or expenditure; they may require special attention. All of this might affect other family members, causing stress for parents and sometimes leading siblings to feel neglected.
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What benefits and services are available to families with disabled children?
A range of professionals can offer specialist support with different aspects of disability, such as speech and language services, physiotherapy and other inteventions.

Voluntary groups can also offer support and advice. They may provide opportunities for families to meet other families in the same situation, and to learn from each other. They may also offer opportunities for children and young people to meet other people who are going through the same experiences.

Different agencies can offer the option of respite care to families with disabled children. This can allow parents to have a break, or to give concentrated attention to other siblings. It can also be a welcome change of scene for a disabled child, and give them the opportunity of meeting other adults and children.

There are a range of grants and benefits available to families with disabled child, and to disabled adults.
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Who can I contact for more information?

Contact a Family
A UK charity organization providing information, support and advice to families with disabled children
http://www.cafamily.org.uk/index.html
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