Jan Tippett explains how to create the ideal learning environment for a child with spina bifida and hydrocephalus
You may have a child with spina bifida and hydrocephalus in your school right now. Typically, a child with these complex conditions will often appear to have good communication skills and be friendly, keen to learn and a positive role model for their classmates. As educators, we need to know about the enormous effort that has gone into getting this child into your classroom at all. Medical staff have been life savers, as well as cognition, mobility and sight savers, by completing a series of operations and procedures to stabilise a child’s condition in order to help them attend school. Parents have acted as their child’s advocate through consultations, appointments, meetings and emergency admissions to hospital, sometimes under frightening circumstances. And now their child is here in your class this year, so you need to know how to provide them with the best possible environment for learning.
Spina bifida is a pre-natal condition affecting the spine so, in extreme cases, it can lead to severe lower limb paralysis and continence control issues. Some children maintain their movement and physical independence yet may still have continence management difficulties. There may also be differences in brain development arising from spina bifida.
Hydrocephalus can result from some forms of spina bifida, causing a build-up of cerebrospinal fluid in the brain. Hydrocephalus can also be caused by conditions other than spina bifida – such as infections, brain injuries, brain cysts, tumours or genetic conditions – or by an unknown cause. The resulting increased pressure in the brain, followed by treatments and procedures, can have a minimal or a profound effect on cognition, communication, mobility and sensory needs with a resulting impact on self-esteem and social, emotional and mental health.
A child with spina bifida and hydrocephalus has the double difficulty of gaining physical access to school life, as well as the full school curriculum. Education lecturers often say to student teachers, “In order to teach the child, we must first ‘learn’ the child”, so teachers today must also learn how these two complex conditions can affect a child’s development and their learning in education settings.
As educators, we recognise the individual needs of each unique child. It is certainly a good idea to view spina bifida and hydrocephalus as spectrum conditions with very severely affected children at one end of the continuum and relatively unaffected ones at the other.
Many medical professionals will adopt a “wait and see” approach, but educators cannot use the same strategy because we only have the limited time of each school year to help a child to make progress. From the outset of the new academic year, teachers must work hard to understand how best to support children.
Physical and sensory needs
When a pupil has mobility difficulties arising from spina bifida and hydrocephalus, one of the first considerations for education settings is physical access to classrooms, toilets, dining rooms and outside spaces. Schools should have an accessibility plan on their websites, making buildings accessible for physically disabled pupils, and “reasonable adjustments”, promoting inclusion in all aspects of school life. Schools also have an “anticipatory duty” to take note of changes that need to be made in advance so that every child is fully included.
Pupils with spina bifida and hydrocephalus can have visual perception problems affecting their tracking from left to right, judging distances, figure-ground discrimination and their internal map when finding their way around a new space. Pupils need practice moving about in a new environment, with supervision to become confident when getting around school. Classroom re-organisation should be kept to a minimum, along with seating plan changes, to provide feelings of security.
Some pupils have sensory processing problems, which appear similar to those experienced by children with autism. Hypersensitivity to noise, lighting levels, tastes, textures and being in crowds are quite common. When making sense of sensory behaviour, schools may wish to conduct a sensory audit so supportive strategies are in place at an early stage as part of children’s daily routine.
Medical needs should be closely considered because pupils with spina bifida and hydrocephalus can also have additional health concerns like epilepsy or vision difficulties, which can affect their educational opportunities and their health throughout life. Personal care can also be an issue for some pupils because of the complicated aspects of their support. Self-help and independence skills can take longer to learn than for neuro-typical children because children don’t remember to stay hydrated for health and take charge of other personal care.
Due to the sheer effort of moving around over long distances around a school setting, pupils often need rest breaks and opportunities to stay hydrated factored into the school day, along with continence management time. Dignity when addressing medical needs should also be carefully considered. The daily routine and timetable of a pupil can become focused on physical and health needs rather than learning, but even here there are opportunities for teaching pupils counting, concentrating and sequencing.
Hydrocephalus, and its resulting treatment, needs to be constantly considered and monitored throughout life, both medically and in every pupil’s educational setting.
Given all the professionals involved in the care of a pupil with spina bifida and hydrocephalus it is easy to lose sight of the child. Fortunately, children with these conditions are generally able to communicate at some level, be a positive presence and often a shining light in the classroom. Having a good vocabulary often hides the difficulties children have with pragmatic meanings. Educators needs to consider literal understanding and rigid thinking that can make communication with peers and school staff difficult at times. Role play activities help pupils to learn language norms expected in school.
An inclusive school provides pupils with a range of conditions with opportunities for self-advocacy. Understanding and describing their own condition, learning to speak up for themselves and expressing their needs and responsibilities are important skills, which pupils with spina bifida and hydrocephalus can master with repetition, time and patience.
Social, emotional and mental health needs
A child with physical needs can often feel isolated and cut off from other pupils by their physical environment, so inclusion should be considered when creating the right learning environment for pupils. Emotional factors can affect concentration, so a happy child has a better chance of learning. Every child has a right to sit with their class, be called upon to answer questions, not have an assistant as their group partner, develop authentic friendships, experience being a group leader and be a pupil in their class, not a guest.
Not only will there need to be physical adaptations for limited mobility and continence management differences, spina bifida can also affect cognition and social, emotional and mental health.
Being a verbally fluent speaker and able to read at an age-appropriate level during Key Stage 1 often masks the problems that a pupil with spina bifida and hydrocephalus faces in the classroom. School staff should consider a range of potential neuro-cognitive effects such as issues with memory, attention, concentration, flexibility of thinking, assembling and processing information, time management and executive functioning.
These difficulties have many overlaps with other neurological conditions. Teachers need to consider the precise effects of these conditions in order to modify teaching methods and make small changes to classroom management to enable every child to thrive.
As a child with spina bifida and hydrocephalus develops, you might notice that the way they think, learn and behave has similarities to other conditions, such as autistic spectrum condition (ASC) or attention deficit hyperactivity disorder (ADHD). Sometimes, it can be useful to have a diagnosis, as this can effectively describe the way a child learns that educators will easily recognise and points us towards resources and strategies to support children’s learning. It isn’t that there is an “extra” condition on top of spina bifida and hydrocephalus, but it is a description of how a child’s neurological development is affecting them.
Let’s consider the cognitive effects of just one aspect of these conditions, memory, and how school staff can create a positive learning environment. Children with spina bifida and hydrocephalus are often rule-governed and can be very good at remembering through regular practice so that it passes from their short-term memory (their “post-it notes”) to their long-term memory (their “library”).
The learning environment needs to be less busy, with fewer visual, auditory and sensory distractions. Working memory – being able to hold information in mind and manipulate it – will need the scaffolding of memory aids that are simple, prominent and regularly brought to the child’s attention in a positive way.
Rehearsal and repetition are necessary to store information in our long-term memory, so time and providing cues for retrieval are vital for information to be accessed. Pupils may have genuine recall difficulties, filling the gaps with confabulation. Helpful technology is important in the classroom, such as evidence-store software, visual timetable apps for organisation and social stories to embed routines and reminders.
The low profile of spina bifida and hydrocephalus and the complex subtleties of how the conditions present in different children can lead to difficulties in education settings. By “learning the child”, educators can provide the same learning experiences as they do to typically developing children, explicitly teaching pupils in an ideal learning environment, so expected development is not derailed. The adaptive capacity of the brain gives us as educators the opportunity to teach children how to adjust to their conditions, by helping them to form new neural connections in order to function in mainstream life.
About the author
Jan Tippett is National Education Officer for Shine charity, which works with children and young people with spina bifida and/or hydrocephalus, and families and professionals, in England, Wales and Northern Ireland. Information about supporting children with spina bifida and hydrocephalus is available on the charity’s website.