Preparing for school

Children with muscular dystrophy or related neuromuscular conditions face a number of challenges throughout their school life. Their condition may mean that they have difficulty learning or accessing school facilities, or some might face discrimination in their educational life. Parents share these experiences with their children and are often left fighting for an inclusive and holistic education for their child. 

The issues that parents will need to consider in ensuring that this goal is met are varied. Some questions parents will need to ask are:

• does my child need a Special Educational Needs (SEN) statement?
• does my child have any associated learning difficulties?
• which is the right school for our child - mainstream or special needs?
• is the school accessible?
• can the school be made accessible?
• does the school have the facilities to meet our child's short-term and long-term needs?

One of the most important rules to remember when it comes to educational issues is to plan ahead and to be proactive. Children with muscle-wasting conditions will often experience a progression in their condition through this stage of their life. This change could be very rapid and schools would need to be prepared and ready to deal with every eventuality. A child may be mobile and active when he or she enters the school, for example, but by the time he or she leaves the school, could be an electric wheelchair user needing help with toileting, eating and other personal care.

Working constructively with the school and professionals involved in your child's education is very important. It is essential to help them understand your child's specific needs and how these are likely to change over time, to allow for forward planning.

Special Educational Needs statements

A Special Educational Needs (SEN) statement is a statement that will describe all of your child's SEN and the special help your child should receive. Your local authority (LA) will usually make a statement if it decides that all of the special help your child needs cannot be provided from within the school's existing resources. These resources could include money, staff time and special equipment. Before a statement can be written, a statutory assessment must be carried out. The LA has a legal obligation to assess a child for a statement but does not have to act on that assessment.

If you are not happy with the LA's final decision, it is within your rights to challenge it. The Muscular Dystrophy Campaign's advocacy service (LINK) has resolved a number of cases involving SEN statements and ensuring that a child's needs are being met in the school environment. If you need support, please contact the team.

Choosing the right school

This will be one of the hardest decisions parents will have to make. You face a difficult choice between mainstream and special needs school provision. It is important to find a school that you feel will allow your child to thrive, where they will feel safe and secure, and where they will be able to develop and learn.

Recently there has been a trend of including children with special needs into local mainstream schools. Through a detailed school action plan, which includes one-to-one support, skilled teachers and an inclusive teaching style, children with special needs can fully access the curriculum and learn alongside other pupils at a level that allows them to grow and achieve their goals.

Special needs schools will be able to offer smaller class sizes and a greater staff-pupil ratio. Staff will have training in alternative teaching methods to get the best out of your child's ability. Special needs schools may also have onsite specialist provisions such as physiotherapy, speech and language therapy, occupational therapy and hydrotherapy. Having access to these provisions will ensure that your child's healthcare needs are fully met.    

Often the best source of support for parents trying to navigate the minefield that is the education system is other parents. They will be going through, or have been through, similar circumstances and will be able to offer first-hand advice. To this end, the Muscular Dystrophy Campaign created the Parents Education Network (PEN) - an online forum that puts parents in touch with other parents so they can talk about the issues they are facing in trying to ensure their child gets the best possible education. You can find PEN through our online forum, Talk MD