Author: George Fox brings over 25 years of specialist education and SEND leadership experience, alongside a deep, practice-based professional understanding of SMS…. Read more
Understanding the whole child is fundamental to supporting person centred planning. They are a person first and whatever comes after is important but secondary to the individual we are supporting. In my previous article (Why Person Centred Planning Matters In Smith Magenis Syndrome) I talked about what happens when we misunderstand people with Smith Magenis Syndrome (SMS). When this happens we can see escalating costs for support, challenging situations and, at the centre of it all, misunderstood individuals.
Often this leads to fragmented provision, parental frustration and limited cohesion in the support around the person with SMS. Person centred planning offers us the opportunity to hear the perspectives of everyone involved. Once we understand the family, education, health, and social care needs we begin to develop a fuller picture of the individual with SMS. When people have extremely complex needs, effective person centred planning becomes central to providing the right support.
Why regulation must come before attainment
In order to build on the previous article it is important to look more closely at the needs of the SMS community and how these influence learning. Based on my experience of working with people with SMS and other associated special educational needs and neurodivergent individuals, regulation is one of the fundamental components that supports young people to remain balanced and ready to engage.
The nervous system runs throughout the entire body, with the brain and spinal cord forming the central control system and nerves extending to every organ and muscle. An unregulated nervous system places a child or adult into survival mode. When this happens, they are unlikely to attend to even the most basic routines or demands. Behaviour often becomes a form of communication that there is an unmet need, and this is when we begin to see challenges emerge.
I was recently speaking with a fellow special needs teacher who described how the underlying focus in her school for children entering Early Years is ensuring that their regulation systems are calm and well supported. She explained that it may sound simple, but if children are not regulated the impact can be immediate and significant. Initial behaviour, the associations children make with certain environments and times of day, and the exhaustion that builds later in the day can all stem from this state of dysregulation.
When we remain in a state of dysregulation we use a huge amount of energy simply trying to stay balanced. This is stressful, and we will naturally do whatever we can to reduce that stress. Without emotional and physiological regulation it becomes extremely difficult to learn. Imagine trying to learn something new while confronting your greatest fear.
Recently I had to undergo fairly invasive dental treatment. It was tolerable, but if someone had asked me to concentrate on learning something complex or respond to pressure at that moment, it would have been very difficult to retain any information. Learning requires a regulated nervous system. When planning for the SMS community, and considering what helps someone remain calm, settled and balanced, regulation should sit at the top of our priorities. It is the foundation for supporting concentration, engagement and learning.
Circadian rhythm disruption and its impact on learning
One of the biological factors that can strongly influence regulation in people with SMS is circadian rhythm disruption.
Circadian rhythms are the natural bodily routines that regulate many of our internal processes, including the release of hormones and chemicals throughout the day and night. One of the best known hormones in relation to the SMS community is melatonin. In most people melatonin is released in the evening when it becomes dark, helping the body prepare for sleep.
For people with SMS, however, this rhythm is often disrupted. Rather than melatonin rising in the evening, many individuals with SMS experience an inversion of this rhythm, meaning melatonin may be released during the day instead of at night. The result is significant disruption to sleep patterns.
Just as many families are settling down for the evening, it can feel as though someone with SMS is only just beginning their day. This is not because they do not want to sleep, but because the hormone that normally signals the body to rest is not working in the same way as it does for most of us.
Anyone who has experienced sleep deprivation knows how significantly this can affect daily life. I can certainly relate to this through my own experience. For a long period my sister would start her day at 3.30 in the morning. She might begin with singing, then a bath, and soon needed attention because something was not working out how she wanted, all before 5.00 in the morning. I spoke in the previous section about dysregulation, and this is exactly how we can begin to see it appear in ourselves. I know I am not quite myself when I am operating on very little sleep.
For individuals with SMS, disrupted sleep is not simply an inconvenience. Emotional regulation, attention and stamina are all likely to be affected. In school settings this can sometimes feel confusing or frustrating for staff, particularly if the underlying biological cause is not fully understood. It can appear as though behaviour has come from nowhere, when in reality it is linked to factors beyond the control of the individual or their family.
Sleep disruption can also contribute to increased dysregulation. We may see reduced impulse control, irritability and fatigue, which can lead to more challenging behaviour. As educators we are often encouraged to understand the function of behaviour and the reasons behind it. However, it can still be difficult to respond when the underlying cause is something we cannot fully control.
During my time working in residential schools we were fortunate to have waking night staff and other staff sleeping in who could help manage the impact of children being awake during the night. For families, and particularly for parents supporting other siblings as well, this can be incredibly demanding. Some families manage split nights simply to ensure that everyone in the household is able to function the following day, including themselves!
So what can schools do in response to this? The answer often lies in flexibility and understanding. Working closely with parents and other professionals through a person centred approach allows schools to develop routines that acknowledge the realities of disrupted sleep. This might involve a more flexible start to the day, a gradual transition into learning or an increased focus on regulation before academic expectations begin. When schools understand the biological factors influencing behaviour, they are better able to create environments where children with SMS have the opportunity to succeed.
Executive functioning and impulse control
One of the characteristics often seen in people with SMS is difficulty with executive functioning. Executive functioning refers to the set of mental processes that help us plan, organise, control impulses, manage emotions and shift our attention so that we can complete tasks and respond appropriately to situations. These processes are largely managed by the prefrontal cortex, the area at the front of the brain responsible for planning, organising behaviour, controlling impulses and regulating emotional responses.
When we consider this and place the person with SMS at the centre, it becomes easier to understand why challenges may arise. How often do we hear comments such as “he knows what he is doing” or “they are doing it on purpose”? In some ways that may be true, but when someone struggles with impulse control, finds it difficult to wait, cannot easily shift attention and becomes overwhelmed by frustration, their behaviour can quickly appear intentional or oppositional when in reality it reflects difficulties with executive functioning.
For many individuals with SMS, differences in executive functioning may present in several ways, including:
- reduced impulse control
- needs around planning, waiting, shifting attention and managing frustration
- responses that may appear as refusal or oppositional behaviour, particularly when demands feel overwhelming, unclear or poorly timed
When we return to thinking about support and planning, this raises an important question for professionals and families. How much explicit teaching and support has been provided to help the person learn alternative ways to respond? When someone experiences barriers with executive functioning, expecting them to manage these situations independently is unlikely to be successful.
Instead, support needs to include clear routines, structured activities and predictable transitions. By offering this kind of scaffolded support we increase the chances of success for someone who finds executive functioning difficult.
In some ways it is a little like being told not to press a large red button placed directly in front of you while someone repeatedly reminds you not to touch it. Most of us would eventually feel the urge to press it. For someone with difficulties in impulse control and regulation, resisting that urge becomes significantly harder.
Social communication, anxiety and attachment
Relationships are not an optional extra for people with Smith Magenis Syndrome. They are central to learning and to supporting this community. Most of us who have had positive experiences in school or the workplace will recognise that relationships often make the difference. They can influence whether we remain in a job we are unsure about or continue studying a subject we may initially find difficult.
People with SMS commonly have a strong desire for connection and interaction. Many are highly sociable in their approach to others. However, this can sometimes become challenging if they find it difficult to read social situations or interpret the circumstances they are in. Relationships rely on subtle social cues, emotional regulation and an understanding of how others may be feeling. When these elements are difficult to interpret, misunderstandings can occur.
Within educational settings we often talk about the importance of “trusted adults”. In my own experience working in schools this refers to adults that a young person feels safe with and can turn to for support when situations become challenging. For individuals with SMS, these trusted relationships can be particularly important in helping them navigate the social and emotional demands of daily life.
However, these relationships need to be managed carefully. Many individuals with SMS can develop strong attachment patterns with certain adults, which can sometimes make it harder for them to accept support from others. This is not a negative trait in itself, but it does mean that schools and families need to plan thoughtfully so that support is shared and sustainable.
When trusted relationships are developed well, they can provide emotional safety, predictability and understanding. These elements are essential for regulation and confidence. When someone feels safe and understood, they are far more able to engage with learning and respond positively to the environment around them.
The role of person centred planning in schools
We have touched on this throughout this article, but it is important to place person centred planning at the heart of the decisions we make for the SMS community.
When person centred planning is used well, it allows us to:
- manage expectations carefully, ensuring we focus on the areas that matter most
- build predictable routines that have meaning and purpose
- identify the people who can help interpret the world for the person with SMS and support others to understand their needs
- understand how the child communicates most effectively
- set expectations that are both ambitious and realistic
This is where we begin to see readiness to learn becoming a reality for a person with SMS.
Person centred planning is ultimately about translating the child’s needs into everyday practice. It ensures that support is practical, collaborative and focused on what will genuinely help the child succeed. When schools, families and professionals work together in this way, we create environments where regulation, relationships and learning can develop together.
Evidence and closing reflection
When we consider the areas included in this article, we begin to see how readiness to learn can be created. This gives individuals with SMS the opportunity to access the different areas of learning that a curriculum offers. It is not a formula, however, and we often find ourselves navigating a careful balance between regulation, executive functioning and social relationships.
Improving outcomes for children with SMS does not begin with curriculum targets. It begins with understanding how the child experiences the world.
The Child Before the Plan: Why Person Centred Planning Matters in SEND Education