Schools For parents and families

What about schools?

Some children are already at school when they are diagnosed with a muscle-wasting condition, while others may not yet be at nursery school age.

A diagnosis of a muscle-wasting condition does not mean your child cannot attend a mainstream school. This will depend on a variety of factors, including your preference and the inclusiveness of the school. Most children with muscle-wasting conditions are able to attend a local primary school along with their friends.

When selecting a school for your child it is important to explain to the Head Teacher that your child has a musclewasting condition. Knowing this will be helpful for the teaching staff, enabling them to plan appropriately for your child. Every school has a Special Educational Needs Co-ordinator (SENCo), who will need to be involved to ensure your child’s needs are met in school.

The clinic staff or therapists who work with your child could also talk to school staff about your child’s condition and how it will affect them while at school. This may be the case for nursery schools too.

It is important to raise any concerns you have about access. The school you choose needs to be right for your child throughout their time there and as their condition progresses. Local Education Authorities (LEAs), or Education Authorities (EAs) in Scotland, can usually make minor adaptations to buildings. They are not legally required to make every school in the area fully accessible.

Staff at your preferred school should seek expert advice from the LEA/EA if they have any concerns.

The LEA/EA should assess any additional needs your child may have for learning or physical management. They may issue an EHCP or, in Scotland, a Co-ordinated Support Plan.

Most parents of young children don’t want their children to be treated any differently from other children, and most schools try to respect these wishes. Allowances will sometimes have to be made, however, to ensure your child’s wellbeing. Agree with teachers what these will be and review them on a regular basis.

Other children in the class may ask about your child’s additional needs. Discuss with teachers, and your child, what explanation should be given. You may want someone to explain to the class that your child has a medical condition that causes their muscles to weaken and waste, and which makes certain activities difficult or impossible. Let the class know how they can be supportive by, for example, holding doors open. Only do this with your child’s consent.

A few children with muscle-wasting conditions may prefer to be in a school for special educational needs, particularly if they have a significant learning difficulty. Classes tend to be smaller, and physiotherapy and other therapy services will probably be available on site. Some parents also find a this school environment more supportive.

Will our child get upset or angry? How will he/she cope?

You may be surprised at how well young children cope with their diagnosis. However, as the condition progresses and changes occur, they will have to adapt. Children may express their anger or frustration by displaying challenging behaviour.

Try to keep life as ‘normal’ as possible, and don’t treat your child, who has a muscle-wasting condition, any differently from your other children. Have clear guidelines about what is acceptable behaviour and what is not.

It may be appropriate to give your child more information about their condition to help them make sense of the changes taking place. Try to involve your child in decision-making and give them the space to develop friendships. When you talk to your child, ensure you really listen, otherwise you could assume he/she has the same anxieties you have. They are more likely to be concerned with today, rather than tomorrow (or next year). Avoid being ‘over-protective’; as all children do, he/she needs some adult-free time.

If your child is being teased or bullied at school, seek advice from school staff and work with them. With your child’s permission, consider telling classmates about the situation. This is often the best way to gain support and respect.

It can be very helpful to get a health professional to do this, for example the care advisor or the clinical nurse specialist. Some children like to do this themselves, with their teacher supervising.

Some children may benefit from talking to a counsellor. Art or music therapy can also be helpful and fun. Sometimes relatives and friends may treat your child differently – this can create tensions within the family and between siblings, so be clear about your wishes in this area.

What about puberty and sexual issues?

Children with muscle-wasting conditions experience puberty in the same way as others their age do. As they get older, they will require an increasing amount of physical care so think about ways of maintaining privacy and dignity.

Your child will need opportunities to learn about sexual issues and form relationships with others, as any other child their age would. Being physically dependent on others should not prevent your child increasing their independence in thought and actions.