National Reyes Syndrome Foundation UK

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Life after Reye's Syndrome or a Reye-Like Disorder

Dealing with disability

Discovering that your child has a special need or disability is probably one of the most devastating experiences that a parent will live through. The feeling of isolation - both physically and emotional – can often be acute. However, in time it will be found that some of the pain can be relieved by sharing thoughts and fears with other families in a similar situation.

Although brain damage is not reversible, it is true that much progress is possible. Parents must remember that their child has the capacity to grow and change, and that he or she must be given room to do so. Treatment options should be discussed and when a decision is reached it can hopefully be supported by all members of the family. It is very important that a sense of balance be reached and maintained by the family as soon as possible.

Local authorities have a legal responsibility to help families with disabled children.  Many children have additional needs and disabilities, and some are more severely affected than others.  Some disabled children and their parents will need practical support both inside the home and outside it.

Advice on Children's care services can be found by visiting the “Contact – for families with disabled children” website, then click on to the box "Advice on Children's social services – Read more".  This website can be found by consulting Resources and Reports shown opposite.

Contact-a-Family also publishes a comprehensive guide which explains your right to get the support you need from your local authority through departments like social services, sometimes known as 'children with disabilities teams' , 'children's' or social care services'.

This guide titled "Services and support from your local authority" (England) can be viewed by visiting "Resource Library – Contact a Family" website: click on to "download a publications list" (PDF): then on to "Social care services" which will display the guide.  The website can be found by consulting Reports and Resources shown opposite.   There is also a separate publication in this section titled "Carers assessments – help for parent carers England" which may be of interest.

There can also be found in the Resource Library of Contact a Family a guide on getting help in education, titled "Special educational needs in England". On 1st September 2014 the government introduced changes in the way children and young people with special educational needs are supported. These changes were introduced through a new law –The Children's and Families Act 2014 – which applies to England only.

To view this guide – visit "Resource Library" – Contact a Family website: click on to "download a publication list" (PDF) then on to "Education and child care" which will display the guide. Two further guides - "Special Educational Needs - Wales" and "Additional Support for Learning – Scotland" may also be of interest. If you live in Northern Ireland, phone the Contact a Family helpline 0808 808 3555.

Further information can be found by consulting the Internal link "Disabled Children's Services" to view a list of the guides and supplementary pamphlets that are published by Contact a Family. 

Many voluntary organisations also exist to support families in their search for information and service provision.  

 

 Next review: December 2019