We found out about statementing when the social worker from the Children with Disabilities Team talked us through the process and produced the paperwork. We discussed the specialisms of various schools and where they thought our daughter would get the best support in the right environment. We were also told about occupational therapy, and wheelchair and speech and language services.
The local authority had given us a list of special schools which we then visited and made a decision on. We informed them which one we thought was best for our daughter and they arranged it. At this stage we worked mainly with the social worker, the nursery nurse and the head teacher from our chosen school - who is now a personal friend. We didn't get any information about the parent partnership service, but we were quite happy with the whole process and how it worked out for us. The teachers we dealt with were all very supportive.
Through the school we found it easy to make contact with other parents in a similar situation to our own, through informal chats and get togethers. In leisure terms, the school runs some after schools clubs and acts as a venue for voluntary sector activities. Our daughter also has access to specialist play services, and we were recommended the Play and Resource Centre and the Chelmsford Mencap Daybreak Scheme by other parents.
Through the school we found it easy to make contact with other parents in a similar situation to our own, through informal chats and get togethers.
During the holidays we employ a personal assistant, and our daughter goes to PARC and Daybreak. Although the time we have to spend with the rest of the family is never enough, using direct payments and employing our own help does make it easier. The level of support we provide means my wife and I have little time and energy for anything else, and we often feel like we are leading separate lives. We tend to turn to our friends for support.
We found out about person centred planning through the Partners In Policymaking course. We plan for our daughter's future as a family, with input from her school and personal assistants. This really works for us, so my advice for other parents would be don't panic - start making plans for every stage of your child's life and keep these plans up to date. Fight for everything your child needs and deserves.
The level of support I provide for my daughter hasn't affected my relationship with her - she is the most important person in my life. My only hope for the future is that she will be happy and that the family will survive.
Direct payments: in some cases, individuals may be able to receive support for their local council as cash, allowing them to choose the services they want for themselves.
Person centred planning: an approach that involves listening to what someone wants from life and helping them to achieve it.