Sarah Oakley BA (Hons), RGN, RHV, IBCLC, Cert HP (Open)

Nursing Nurture

As the mother of an autistic teenage boy I am passionate about ensuring families with disabled children get the support they need.

For parents, particularly those whose children are newly diagnosed, the whole experience can be extremely distressing and bewildering. It is often difficult to know who to turn to for help. Whilst your child may have several professionals involved in their care the focus is often on their needs, with the impact on the parents and other children in the family being overlooked.

There is an array of voluntary, statutory and private services available but finding out about them isn’t always easy. Most parents learn about services from other parents.

Having identified a service which may be of help you may then find accessing the service is problematic and time consuming. This can be the case with mainstream services, including those provided by statutory organisations, as well as specialist services which are in short supply and usually have tight entry criteria.

As an experienced health visitor, I have supported many families through the process of diagnosis, living with the child’s condition and accessing support and services.

Because of my experience as a parent, as well as a health visitor, I have a good working knowledge of local service provision and have worked with or know many of the professionals working within health, education, social care and voluntary agencies. I have knowledge and experience of the Early Support Programme and the statementing process for special educational need.

Having a disabled child can be extremely mentally and physically draining. It can be exhausting and have a negative effect on wider family relationships, as well as your relationship with your child. I can support you through the emotional and psychological difficulties that come with having a disabled child.

When my son was first diagnosed I did the National Autistic Society Early Bird Programme for parents. I have experience in using PECs and visual scheduling. I have undertaken professional training in behaviour management and have personal, as well as professional, experience of managing challenging behaviour.

I can provide guidance on the services and help available and help you to successfully access these. I am able to liaise with other professionals and convene multi agency meetings to aid in getting everyone working together. I can also write reports and letters of referral. Because I am independent and there to represent your interests and those of your child I can ask the difficult questions and challenge professionals on their decision making if necessary. I also have experience in applying to charities for grants, which may be helpful if you need particular items of equipment, and in completing DLA forms.