For this to be effective, schools must fully understand both the diagnosis and prognosis of the condition, and the physical changes that are likely to take place in the child during his or her time at school. SEN advisors and physical difficulties teaching advisors are employed by the LA, and can offer advice and information. The NCA and healthcare professionals will visit schools to give specific advice.
They can also provide information towards the formulating of an EHCP (SEN Statement in Northern Ireland, Co-ordinated Care Plan in Scotland).
Dealing with diagnosis
Everyone handles news of a diagnosis with a muscle-wasting condition in their own way. Where the prognosis of the condition is life- limiting, there is likely to be a wide range of reactions. What all parents must face, however, is the reality of living with their child’s progressive condition. Coming to terms with a diagnosis can often mean a period of fluctuating emotions for the entire family, and this could continue for a long time. Some feelings may re-surface as the condition progresses and the child begins to lose specific skills.
Most families will have been given an accurate diagnosis and prognosis, but may be unable to emotionally process and deal with the information they have received. Some families choose to tell their child everything about the condition, some say nothing, and others give their son or daughter limited information. There is no right or wrong way. Each family finds their own way of managing this with the support of professionals, as and when needed, for direction and support.
Some parents find being active on social media offers them a form of support and another way of being in contact with other parents for peer support and guidance.
Families are likely to have strong views on what their children should and should not know about their condition. It is vital that schools sensitively raise the issue with the family about what the child has been told, and find out whether the information he or she has been given is age-appropriate. Staff members need to understand what the parents’ views are about sharing information, and the importance of working together with professionals to develop a plan to support their child and the wider family.
Difficulties can arise, for example, if an older child searches on the internet for information about his or her condition and begins to ask questions that require honest answers. Similarly, schools also need to be aware of how much the affected child’s siblings understand.
Agree with the parents on appropriate and consistent responses to be given to questions asked by the child. These responses should be included in the whole school plan, so other staff members are aware of what to say. A few parents want to protect their children from the reality of the situation and, in these cases, it may be necessary to seek specialist advice to ensure that the needs of the child are being met.
General support for the child, family, staff and pupils
Muscular Dystrophy UK has developed helpful guides for parents and/or carers of children recently diagnosed with a muscle-wasting condition. The aim is to offer support and information to families at this difficult time, and to answer the questions most parents/carers ask. (See Resource list.)
The family should have access to support from a specialist medical team via their local paediatrician, and health and social care professionals. In some areas, there may be support groups that enable families to meet other families in similar situations. In addition, they may be offered psychological support, via their GP, from a clinical psychologist or EP. Many families with children with life-limiting conditions access support from their local children’s hospice, where they may go for respite care and to meet other children with the same condition. Hospices offer a wide range of services to support the whole family, including siblings groups, counselling, training and professionals that can offer support through different stages of the child’s life especially around the difficult times such as end-of-life, or when the condition deteriorates.
The child's needs
Support for the child’s mental health and wellbeing is essential. Professionals can provide this, but children will often seek support from those people they feel comfortable with at school. It may be that they will ask an ESA or a lunchtime carer searching questions about their condition.
Often valuable support for a pupil with a muscle-wasting condition comes from another pupil with a similar condition. Liaison with a NCA/specialist nurse or local paediatrician can provide opportunities for this connection, or events and support groups organised by MDUK.
Understanding a child’s condition is important in creating realistic expectations for him or her. It is essential to concentrate on what children can do rather than what they can no longer do. Let them make their own decisions, even when they are physically unable to perform certain tasks. Allow them, for example, to make their own choices at lunchtime, rather than having decisions imposed on them by an adult.
Working towards social inclusion can be difficult and it is important to give children the opportunity to integrate with their peers, without adult supervision. A ‘buddy’ or peer support system can be particularly helpful during break and lunchtimes to promote positive social interaction. Schools should also promote positive role models of disabled people throughout the curriculum.