Returning to School

Returning to school

For copies please contact: Cerebra Second Floor Offices The Lyric Building King Street The Royal Marsden Hospital Carmathen NHS Foundation Trust SA31 1BD, Wales Paediatric Oncology Unit Tel: +44 (0) 1267 244200 Downs Road www.cerebra.org.uk Sutton Surrey SM2 5PT www.royalmarsden.org [email protected] A TEACHERS GUIDE FOR PUPILS WITH BRAIN TUMOURS andauthors acknowledgements

Authors Bette Petersen Broyd Hospital School Teacher & Principal Researcher Dr Margaret DeJong Consultant Child and Adolescent Psychiatrist Dr Samantha Peacock Child and Adolescent Clinical Psychologist Dr Darren Hargrave Consultant Paediatric Oncologist

The Royal Marsden Hospital Foundation Trust Paediatric Oncology Unit Downs Road Sutton Surrey SM2 5PT

Foreword A special thanks to the staff at the Royal Marsden Hospital, the parents, and the schools who worked together to produce this excellent resource for teachers. We are proud to be able to fund such a worthwhile project. Cerebra

A very special thank you goes to the patients and parents who took part in the study.

Grateful thanks to the staff and pupils from the following secondary schools:

Ashburton Community School, Croydon The Ashcombe School, Dorking Bennett Memorial School, Tunbridge Wells Carwarden House School, Camberley Cheam High School, Sutton The City of London Academy, Southwark Court Moor School, Fleet Central Sussex College Dorothy Stringer High School, Brighton Dover Grammar School for Girls Eltham Green School, London Gravesend Grammar School for Girls Harris City Technology College, Upper Norwood Hayes School, Bromley Hichley Wood School, Esher Landsdowne School, Brixton Limpsfiels Grange School, Oxted Treloar College, Alton Oxted School Reigate Secondary School SEEVIC College, Benfleet Spelthorne College, Ashford St Andrews CE High School, Croydon St Andrews RC School, Leatherhead St Luke’s School, Redbourn St Paul’s RC Secondary School, Abbey Wood St Richard’s Catholic College, Bexhill-on-Sea St Simon Stock School, Maidstone St Wilfrids Catholic School, Crawley Thomas Bennett Community College, Crawley Ursuline College, Westgate-on-Sea Walthamstow School for Girls Walton Leigh School, Walton-on-Thames Warlingham School, Warlingham Wilmington Grammar School for Girls, Dartford

2 toreturning school A teachers’ guide for pupils with brain tumours

INTRODUCTION 3. DIFFICULTIES IN THE 1. BRAIN TUMOUR INFORMATION CLASSROOM Brain & spinal cord tumours p7 Fatigue p71 Brain injury and brain tumours p10 Emotional aspects p73 Behaviour p75 Individual tumour types Social needs p79 Medulloblastoma (PNET)p11 Sexuality p81 Optic pathway glioma p13 Speech, language and communication p83 Low grade glioma p16 Vision p85 High grade glioma p18 Hearing p88 Ependymoma p20 Mobility and motor skills p90 Craniopharyngioma p22 Memory p92 Treatment Concentration and attention p95 Cognitive difficulties p99 Surgery p24 Chemotherapy p27 4. CONTACTS & REFERENCES Radiotherapy p29 Medical terms p107 Follow up of brain tumour Useful contacts p110 patients p31 Infection pro forma letter p111 Recommended reading p112 2. RETURNING TO SCHOOL While absent from school p33 Note to treatment centre: Welcome back to school p36 Please tick the boxes which are Communication with the family p39 relevant to the particular pupil. Preparing and supporting staff p42 Preparing and supporting peers p45 Siblings p47 Tests and exams p50 School transition p54 Special Educational Needs and additional support p55 The role of the Learning Support Assistant p58 Physical Education and outings p63 Specialist schooling p66 Managing bad news p67 3 introduction

For children and young people who have been diagnosed with a brain tumour, successful reintegration into school life is of the utmost importance. This is true even for those whose prognosis is poor, and who may have a limited life expectancy. School represents to these pupils a resumption of normal life, with an opportunity to enjoy social relationships with peers and to benefit from the stimulation and rewards of learning. It can greatly reduce the sense of isolation and loneliness which is an inevitable part of illness and hospitalisation. For teachers and schools, meeting the needs of such pupils represents a major challenge. Most teachers reading this booklet will be faced for the first time with the prospect of a pupil with a brain tumour in their class, wanting to do their best for the pupil and yet perhaps feeling that they lack the confidence and expertise to do so. This booklet is intended to provide the guidance which teachers will need to assist them with the task of helping a young person with a brain tumour return to school. It is based on the results of interviewing teachers who have had a pupil with a brain tumour in the classroom and who have had to find ways to accommodate their special needs. Extensive classroom observations in secondary schools and parental questionnaires also formed a part of the preparation for the guidelines. We were struck during these interviews by the teachers’ ability to find creative solutions to the problems experienced by these pupils in school. We have therefore attempted to capitalise on this by giving examples of good practice in each section. We begin by providing some information about your pupil’s brain tumour and its treatment. We also describe the network of hospital and community professionals who will be providing medical and educational support, some of whom will be available to liaise with staff in schools. The main problems experienced by brain tumour patients will be outlined, including difficulties in learning, emotions, social relationships and behaviour. We give examples and case vignettes to illustrate these points. Many teachers will recognise techniques and strategies they already use successfully in class. Some of the problems exhibited by pupils with brain tumours (e.g. poor concentration or disorganisation) are commonly exhibited by other pupils. However, each child is unique and techniques must be adapted to meet their needs. There is usually no one single solution and what may work with one child may not work for another. We hope that this booklet will encourage teachers to use their creativity in finding new ways to help these pupils. Understanding and meeting the needs of a young person with a brain tumour can be frustrating, confusing and anxiety provoking even for an experienced teacher. It is certain, however, that the effort spent will bring its own rewards, and will mean a great deal to your pupil and their family while at the same time enriching the school community.

4 pupil details

Name Date of birth

Diagnosis

Dates treatment started:

Operations Radiotherapy

Chemotherapy

Medication

Special concerns

Return to school: Part time

Full time

parent details

Parents/Guardians:

Address

Postcode

Telephone: Home

Work

Mobiles

Sibling:

STRICTLY CONFIDENTIAL (Where parents and the pupil are in agreement, all teachers should carry a copy in their planners) 5 strategies for brain tumour pupils (Please refer to the full text in ‘RETURNING TO SCHOOL – A teachers’ guide for pupils with brain tumours’)

Communicate any concerns to parents and relevant parties Place the pupil on ‘School Action’, review regularly and leave on SEN register Circulate letters re Measles and Chicken Pox to all parents – if relevant Liaise with the home tutor Work through a plan of action regarding SATS and public exams Be aware of the individual needs of the pupil and their siblings Support the pupil at times of change and school transition

AREAS OF PARTICULAR CONCERN Fatigue Emotional Aspects Behaviour Social Needs Sexuality Cognitive Difficulties Concentration and Attention Memory Speech, Language and Communication Vision Hearing Mobility and Motor Skills treatment centre

Name and address

Consultant

POON Tel (Paediatric Oncology Outreach Nurse)

Hospital Teacher Tel

Paediatric Clinical Psychologist Tel

STRICTLY CONFIDENTIAL (Where parents and the pupil are in agreement, all teachers should carry a copy of this page in their planners)

6 Brain Tumour Information Tumour Brain

andbrain spinal cord tumours

Each year around 350 children and young people in the U.K. will be diagnosed with a tumour in their brain or spinal cord. Although rare, these tumours are very important as they can be difficult to treat and can cause significant disability. The symptoms that result from a tumour can be due to a build up of pressure inside the head (raised intracranial pressure) resulting in headaches, sickness and drowsiness. Other symptoms are related to where the tumour arises.

These symptoms include:

Seizures (fits) Weakness of the limbs

Unsteadiness when walking Parietal lobe Problems with speech & swallowing Frontal lobe Occcipital Back pain or disturbed sensation Temporal lobe Behavioural or learning difficulties lobe Cerebellum Vision or hearing problems Brain stem

7 ri Spinal Cord Tumours Brain &

If a tumour of the brain or spinal cord is suspected, a patient will undergo a scan (C.T. or M.R.I.) to confirm the doctor’s provisional diagnosis. After this the patient will usually be referred to a paediatric neurosurgical centre where further investigations are performed on the tumour including a biopsy and possible surgery.

Main types of brain and spinal cord tumours:

Low grade glioma (benign tumours often called astrocytomas) High grade glioma (cancerous tumours also called glioblastoma or anaplastic astrocytoma) Medulloblastoma (cancerous tumour also called a PNET) Ependymoma (can be benign or cancerous) Craniopharyngioma (benign tumour but often aggressive) Germ Cell Tumour (cancerous tumour also called a germinoma)

8 Learning problems are common and EDUCATIONAL support vital!

Brain Tumour Information Tumour Brain Frequency of childhood brain and spinal cord tumours

RHABDOID TUMOURS 1%

LOW GRADE GLIOMA 37%

MEDULLOBLASTOMA/PNE T 23%

HIGH GRADE GLIOMA 9%

PONTINE GLIOMA 8%

EPENDYMOMA 10%

GERM CELL TUMOURS 6%

CRANIOPHARYNGIOMA 6%

A large team of health care professionals is involved in the decisions as to how best to treat the child. The different treatments depend on the tumour type, its location, if the tumour has spread, whether the tumour is benign (low grade) or cancerous (malignant or high grade) and the age of the patient. Further treatment after surgery may include chemotherapy or radiotherapy. Rehabilitation is essential for all children with a brain or spinal cord tumour and many therapists may be involved. Behavioural and emotional difficulties can result both from the tumour and the effects of treatment and need to be considered during long term follow up.

Brain & Spinal Cord Tumours

0 1

Reduced attention and reaction times attention and reaction Reduced Susceptibility to distraction and reduced concentration and reduced Susceptibility to distraction Compromise of visuo-spatial processing of visuo-spatial Compromise Memory deficits Slowed physical functioning physical Slowed Non-verbal intellectual functioning Non-verbal Chemotherapy Radiotherapy (dose and extent) Radiotherapy Prolonged seizures (fits) seizures Prolonged Surgical complications (bleeding,Surgical infections, etc.) Surgery Raised pressure in the head Raised pressure or hydrocephalus) pressure (intracranial Tumour type,Tumour location and extent Early age at diagnosis age Early Therefore brain injury and associated neurocognitive deficits (learning difficulties) neurocognitive injury and associated brain Therefore monitored.need to be continuously should be applied learning strategies Appropriate child or adolescent. of the developing the impact on the performance to try to reduce Historically, a benchmark against provided have quotient (IQ) scores intelligence after treatment. development in cognitive changes to measure which One major radiotherapy, injury caused by in the brain difference to other trauma, as compared is on year. year that decline in IQ is often progressive of a period means that over This time, (i.e. further time of radiation), from and apparent deficits become more exaggerated. that is appropriate to learn at a rate of failure a result is most likely This of the child, the age for knowledge. acquired than a loss of previously rather The types of neurocognitive problems described in young people with brain tumours people with brain in young described problems types of neurocognitive The include: However, other factors also be modified by injury may a brain caused by the disability such as: school disruption, frequent and hearing), sensory deficits (vision physical limbs, of the disability such as weakness emotional and behavioural as as well difficulties. The factors associated with developing brain injury include: brain associated with developing factors The Brain tumours and their treatment can result in a distinct pattern of problems when in a distinct pattern of problems result can and their treatment tumours Brain or indeed other types of Injury (ABI) Brain Acquired of to other types compared and cancers.tumours deficits’‘neurocognitive as injury presenting Brain (processes and obviously the childsuch and family for and memory) is a major issue as thinking education. a major impact on can have injury and brain tumours and brain injury brain medulloblastoma (pnet)

Brain Tumour Information Tumour Brain A medulloblastoma is a malignant tumour (cancer) formed from primitive or poorly developed brain cells. These tumours commonly arise in the cerebellum, but are also found in other regions of the brain, where the name PNET (Primitive Neuro Ectodermal Tumour) is used. They have the potential to spread (disseminate or metastasise) to the spinal cord via the cerebrospinal fluid (CSF), but rarely spread to other organs of the body. Medulloblastoma is the most common malignant brain tumour of childhood, representing 20% of all childhood brain tumours. It is most common in children between the ages of three and eight, and slightly more common in boys than girls. They can also occur in adults but are extremely rare. Like most brain tumours the cause of medulloblastoma is unknown in the majority of cases. What are the signs and symptoms? The symptoms are usually due to increased pressure in the head (raised intracranial pressure). Common symptoms include:

Nausea and vomiting Gradual decline in school (most common) performance Lethargy and irritability Changes in personality and Headaches behaviour Clumsiness Abnormal gait (the way they walk) Difficulty with tasks like handwriting

If the tumour spreads to the spinal cord, the signs and symptoms may include: Back pain Difficulty walking Parietal lobe Problems with bowel and Frontal lobe bladder control. Occcipital Temporal lobe lobe Cerebellum Brain stem

Medulloblastoma

2 1 Common treatments include: treatments Common What are the possible long-term effects? are What and the children common in young more As medulloblastomas are at an important time of the child's development is given treatment of treatment. be some long term effects may there could include These changes, and hormonal growth changes, behavioural learning possible with coordination. and difficulties problems and visual Hearing both tumour and treatments. from disturbances can result What is the outlook (prognosis)? What and of children has been made in the management Significant progress the last 10 years. people with medulloblastoma over young Intensive and spine has to the brain dose radiation and reduced chemotherapy of patients with a localised tumour, the majority for in a cure resulted which a surgeon is able to remove. Patients,incomplete an had have who of tumour at initial surgery,removal of tumour spread, or evidence a have rate. survival reduced to be difficult. continues of infants treatment The to the entire radiation in delivering delay of the desired is because This and spine. brain Chemotherapy the tumour. to treat and/or radiotherapy with surgery type together The is given Chemotherapy the tumour has spread, to whether in intensity according varies of chemotherapy whether of the patient. will be used and the age radiotherapy Radiotherapy malignant cells. remaining any to destroy used after surgery is commonly Radiotherapy As spinal cord, the CSF to the through spread medulloblastoma may to the is given radiotherapy and spinal cord.brain However, will be delayed, radiotherapy children in young or reduced brain. child’s on a young of radiotherapy due to the significant effects avoided possibly Surgery to confirm the diagnosis, initial surgery All patients will undergo and to try pressure to relieve as much of the tumour as possible. and remove The treatment used depends on location and spread of the tumour and the age of the patient. and the age of the tumour on location and spread used depends treatment The factors. to all of these according plan developed a treatment will have person child or young The How do you treat a medulloblastoma? a treat do you How opticpathway glioma Brain Tumour Information Tumour Brain Childhood optic pathway glioma is a type of brain tumor which is usually a benign slow growing tumour, also called a low grade glioma, (gliomas are a type of astrocytoma). An optic pathway glioma occurs along the nerves that sends messages from the eye to the brain (the optic pathway) and can occur anywhere along its path. For this reason the initial problems a patient may suffer from are related mostly to vision: Reduced vision Squints Flickering eyes Eye protruding forward Double vision Head tilt Blind spots

Eye Optic Nerve

Optic Chiasm Optic Tracts

Optic Pathway Glioma

4 1 can lead to can be inherited from a parent but half a parent from can be inherited ‘neurofibromatosis (type 1)’ ‘neurofibromatosis Tendency to develop both benign and to develop Tendency tumours cancerous occasionally lesions like from types Skin lesions (several “freckles” lumps in the skin to large (neurofibroma) (e.g. bone problems Skeletal of the curvature spine “scoliosis”) (ranges and learning difficulties Behavioural none to severe) from the time the child will be the first affected in the affected the time the child will be the first family. but the widely condition varies The life: occur throughout can problems following specialist with NF-1 will be offered A child/ family a paediatrician up by counselling and be followed in the condition. with an interest Although the cause of most brain tumours is not tumours Although the cause of most brain known, condition that a genetic do know we called these tumours. it (<5 years) If the child is young that the child has not be obvious to anyone may this condition until the time of diagnosis of the glioma.optic pathway type 1 Neurofibromatosis (NF-1) These symptoms can manifest as problems in school, as problems symptoms can manifest These clumsiness, apparent sitting closer to watch etc.television scan identifies the tumour. A brain also cause other it may If the tumour is large such as headaches,problems in the pressure is increased if there or drowsiness vomiting nausea and pressure). intracranial head (raised the hormones in the to control that helps part of the brain The body, hypothalamus, the tumours. optic pathway by affected is sometimes can lead to This (either loss or gain). puberty problems such as early hormonal problems or weight Brain Tumour Information Tumour Brain How do you treat an optic pathway tumour? Observation If a patient’s symptoms are very mild (children with known NF-1 will have visual screening to pick up early problems) and the optic glioma is small and growing very slowly, observing the tumour is the only option. Occasionally, optic gliomas associated with NF-1 can be very benign and can stop growing or even shrink without treatment. However, regular eye checks and brain scans are necessary if observation is undertaken. Surgery Surgery may be considered after the diagnosis of an optic pathway glioma. The purpose of this may be a simple biopsy to confirm the type of tumour or to try to remove part of the tumour to relieve pressure. As the prime aim is to preserve vision it is rare for a neurosurgeon to try and remove all of the tumour as this operation could damage the nerves supplying the eye. Chemotherapy and Radiotherapy Both chemotherapy and radiotherapy can be used to treat the tumour with the aim of stopping the growth so that any further loss of vision is halted (sometimes vision is improved). The age of the child and how fast the tumour is growing are important in deciding whether the patient needs further treatment and which type of therapy will be used. Chemotherapy is usually given as an outpatient but lasts for up to 18 months. See the chemotherapy section for details on this type of treatment. Radiotherapy lasts up to 6 weeks as an outpatient and is very effective in controlling the tumour but does have potential significant long term side effects. What is the outlook (prognosis)? Optic pathway gliomas are usually not life threatening (aggressive tumours can be) and the aim is to preserve function. Some patients may become blind or visually impaired requiring assistance for their disability including appropriate and important educational support. They may require hormone replacement therapy throughout their lifetime. They may develop learning difficulties as a result of the tumour or its treatment. Children with NF-1 may have other problems over and above those from the tumour and these can impact on schooling!

Low Grade Glioma

6 1 Nausea and vomiting Nausea and vomiting and irritability Lethargy Headaches Clumsiness handwriting with tasks like Difficulty decline in school performance Gradual and behaviour in personality Changes Seizures Abnormal gait What are the signs and symptoms? are What location signs and symptoms depend on the The of the patient.of the tumour and age Some in the pressure increased from symptoms result pressure). intracranial head (raised symptoms include: Common Occcipital lobe Parietal Parietal lobe Cerebellum Temporal lobe

Frontal lobe Frontal

Brain stem Brain

Problems with bowel and bladder control with bowel Problems Difficulty walking Difficulty Back pain Low grade gliomas are benign tumours that arise from brain cells called brain from that arise benign tumours gliomas are grade Low astrocytes. glial cells, from Gliomas originate also called astrocytes. will You and glioma used interchangeably. astrocytoma often hear the term In children, grade. low are than 80% of astrocytomas more Low-grade of a period over slowly and grow localised well usually are astrocytomas time. or spinal cord; in the brain anywhere can arise tumours These the (frontal, hemispheres the cerebral are most common areas parietal, lobes) and the cerebellum. temporal or spinal cord of the brain (disseminate) to other areas spread rarely They fluid (CSF).via the cerebrospinal can be solid or part cystic Tumours (fluid filled).

If the tumour spreads to the spinal cord,If the tumour spreads the signs include: and symptoms may

glioma low grade low Brain Tumour Information Tumour Brain

How do you treat a low grade glioma? The treatment used depends on location of the tumour and the age of the patient.

Common treatments include: Surgery All patients will undergo initial surgery to confirm the diagnosis, relieve pressure and to try to remove as much of the tumour as possible. Radiotherapy Radiotherapy is commonly used after surgery to destroy any remaining tumour cells in patients older than 8-10 years of age. Radiotherapy is usually directed locally to where the tumour is / was. See the radiotherapy section for more details on this type of treatment. Chemotherapy Chemotherapy is given together with surgery and/or radiotherapy to treat the tumour. Chemotherapy is usually outpatient based and lasts over a year but is quite well tolerated and pupils can usually continue to attend school. See the chemotherapy section for more details on this type of treatment. What is the outlook (prognosis)? The majority of low grade gliomas are not life threatening but some inoperable tumours (often in young children) can prove to be difficult to treat. In up to half of the cases of low grade gliomas, despite initial control, they can re-grow and need further therapy. What are the possible long-term effects? Low grade gliomas cause long term problems related to where they are located. Tumours can result in growth, hormonal and behavioural changes with possible learning problems and difficulties with coordination. Hearing and visual disturbances can result from both tumour and treatments.

High Grade Glioma

8 1 Occcipital lobe Parietal Parietal lobe Cerebellum Temporal lobe Frontal Frontal lobe Brain stem Brain Back pain walking Difficulty and bladder control with bowel Problems Nausea and vomiting Nausea and vomiting and irritability Lethargy Headaches Clumsiness handwriting with tasks like Difficulty decline in school performance Gradual and behaviour in personality Changes Seizures Abnormal gait If the tumour spreads to the spinal cord,If the tumour spreads the signs include: and symptoms may Common symptoms include: Common What are the signs and symptoms? are What location signs and symptoms depend on the The of the patient.of the tumour and age Some in the pressure increased from symptoms result pressure). intracranial head (raised glioma

High grade gliomas are malignant (cancer) tumours that arise from brain from that arise tumours malignant (cancer) gliomas are grade High cells called astrocytes. 20% of people only and young In children high grade. are astrocytomas classified according gliomas are grade High III) (grade either anaplastic astrocytomas as of aggressiveness to the grade multiforme.or glioblastoma the healthy into often spread tumours These remove to the tumour making them difficult tissue that surrounds (frontal, hemispheres surgically. in the cerebral arise most commonly They (thalamus). of the brain lobes) or centre and temporal parietal tumour The spinal cord. and to other partscan spread brain of the high grade high Brain Tumour Information Tumour Brain How do you treat a high grade glioma? These are very difficult tumours to treat due to the difficulty in completely removing the tumour and their resistance to radiotherapy and chemotherapy. As there is no ideal therapy patients are often treated on clinical trials investigating new therapies. Common treatments include: Surgery All patients will undergo initial surgery to confirm the diagnosis and if necessary to relieve pressure. The surgeon will try to remove as much of the tumour as possible without causing severe disability to the patient. Radiotherapy Radiotherapy is commonly used after surgery to try to destroy any remaining tumour cells. Radiotherapy is usually directed locally to where the tumour is / was. In young children (less than 3 years) radiotherapy may be avoided due to the potential damage on the early developing brain. See the radiotherapy section for more details on this type of treatment. Chemotherapy Chemotherapy has been shown to be of some benefit in the treatment of high grade gliomas but researchers are still investigating the best drugs and treatment schedules. See the chemotherapy section for more details on this type of treatment. What is the outlook (prognosis)? Unfortunately the prognosis is poor for many patients with high grade gliomas. However, some are long term survivors and these are usually characterised by a lower grade (anaplastic astrocytoma) and a complete removal by surgery. Clinical trials are on-going to improve the outcome. What are the possible long-term effects? High grade gliomas can cause long term problems related to where they are located and the treatment received. Tumours can result in growth, hormonal and behavioural changes with possible learning problems and difficulties with coordination. Physical disabilities and seizures can be a problem, even when the tumour is controlled, and will need to be monitored.

Ependymoma

0 2 Occcipital lobe Parietal Parietal lobe Cerebellum Temporal lobe Frontal Frontal lobe Brain stem Brain is a type of brain tumour that arises from the cells that from arises tumour that is a type of brain

ependymoma Problems with bowel and bladder with bowel Problems control Difficulty walking Difficulty Back pain Abnormal gait Changes in personality and behaviour in personality Changes Gradual decline in school performance Gradual Difficulty with tasks like handwriting with tasks like Difficulty Clumsiness Headaches Lethargy and irritability Lethargy Nausea and vomiting (most common) Nausea and vomiting ependymoma Approximately 60% of all patients diagnosed with this tumour type are 60% of all patients diagnosed with Approximately of age.less than 5 years to occur in the twice as likely are Ependymomas back of the at the lower (this is the area of the brain region fossa posterior head). is unknown. the cause of ependymoma tumours most brain Like line the brain’s fluid spaces,line the brain’s as the ventricles. known It can be classified as depending on how (cancer) or benign (non-cancerous) either malignant is. the tumour aggressive (disseminate the potential to spread have They fluid (CSF). via the cerebrospinal to the spinal cord or metastasise) If the tumour spreads to the spinal cord, If the tumour spreads include: the signs and symptoms may Common symptoms include: Common What are the signs and symptoms? are What in the head (raised pressure due to increased usually symptoms are The pressure). intracranial An Brain Tumour Information Tumour Brain How do you treat an ependymoma? Current treatment aims at achieving a complete surgical removal of the tumour. However, this is only possible in approximately 30-50% of cases, as these tumours have a tendency to infiltrate or spread into healthy brain tissue that surrounds the tumour. In addition, further treatment is usually required and varies according to location of the tumour and age of the patient.

Common treatments include: Surgery All patients will undergo initial surgery to confirm the diagnosis, relieve pressure and to try to remove as much of the tumour as possible. Sometimes multiple operations will be needed. Radiotherapy Radiotherapy is commonly used after surgery to destroy any remaining tumour cells. Radiotherapy is usually directed locally to the area of the tumour. However, in young children (especially under the age of 3 years), radiotherapy will be delayed, reduced or possibly avoided due to the significant effects of radiotherapy on a young child’s brain. See the radiotherapy section for more details on this type of treatment. Chemotherapy Chemotherapy is usually given to either facilitate further surgery by shrinking any remaining tumour or to avoid / delay radiotherapy in young children. The type of chemotherapy varies in intensity and duration according to the age of the child. See the chemotherapy section for more details on this type of treatment. What is the outlook (prognosis)? This is very closely related to whether the neurosurgeon can remove all of the tumour, its spread and aggressiveness. Patients who have had an incomplete removal of tumour at initial surgery, or evidence of tumour spread, have a reduced survival rate. The treatment of infants is difficult but results with intensive chemotherapy have been very encouraging. What are the possible long-term effects? As ependymomas can occur in young children and the treatment is given at an important time of the child's development there may be some long term effects of treatment. These could include growth and hormonal changes, behavioural changes, possible learning problems and difficulties with coordination. Hearing and visual disturbances can result from both tumour and treatments.

Craniopharyngioma

2 2

Headaches (sometimes accompanied by Headaches by (sometimes accompanied nausea or vomiting) Hormone disturbances Disturbed sleep patterns disturbance Visual changes Behavioural growth Slow sensitivity to cold or heat Increased puberty or delayed Early variations Appetite and weight Symptoms include: Symptoms What are the signs and symptoms? are What the tumour causing either from result Symptoms the of fluid surrounding of the flow blockage brain, pressure intracranial in increased resulting to the and damage pressure direct or from pituitary gland, the eyes. from or nerves Pituitary gland craniopharyngioma Craniopharyngiomas are benign tumours that do not spread, benign tumours are Craniopharyngiomas but may near them, with important structures interfere problems. causing serious and tumors of childhood brain 5-10 percent represent Craniopharyngiomas can be solid, cystic (full of fluid), calcified, or full of debris. are They to manifest (or longer) 2-3 years that can take tumours slow-growing a diagnosis is made. before themselves Craniopharyngiomas result from the growth of cells that early in fetal in of cells that early the growth from result Craniopharyngiomas to their usual area. to migrate failed have development tumors These the pituitary gland. occur just above generally of the Located at the bottom brain, vital many of a pea and controls pituitary gland is about the size the functions. Brain Tumour Information Tumour Brain How do you treat a craniopharyngioma? Surgery is the main treatment strategy and if possible the neurosurgeon will try to cure the patient by completely removing the tumour. However, surgery can cause significant damage to the surrounding brain and often tumour will be left behind to avoid further damage to the patient. Radiotherapy may be administered to stop the tumour from growing.

What is the outlook (prognosis)? Most children and young people are cured from their tumour by surgery and radiotherapy but many suffer from serious long term problems some of which can be life threatening. What are the possible long-term effects? Craniopharyngiomas, although benign, have many potential serious effects on a child and young person’s health and development. These include growth, hormonal and behavioural changes as well as learning difficulties. Visual disturbances can result from the tumour and are sometimes severe. An endocrinologist (specialist hormone doctor) will need to be involved in the long term care of patients to replace hormones that are deficient (either in the form of tablets or injections). The patient may need urgent medical attention if they become unwell as they may not be able to control fluid balance and blood pressure normally. Children and young people can develop severe obesity problems due to hormone problems and damage to the hypothalamus of the brain which is the region controlling appetite. This needs complex multi-disciplinary management and can be very difficult to control. Behavioural problems and educational difficulties can be severe!

Surgery

4 2 cerebro-spinal fluid cerebro-spinal catheter brain valve In some cases, lead tubing may to the heart heart tubing to the abdominal cavity for brain brain for & tumours spinal cord

Making a new pathway for fluid to flow in the brain without a shunt in the brain fluid to flow for pathway Making a new ventriculostomy) (3rd from the brain to the abdomen). the brain from or permanent can be temporary This Removing the tumour,Removing if possible Giving steroid drugs Giving steroid Insertion of a shunt (this is a mechanical device that drains excess fluid excess Insertion that drains mechanical (this is a of a shunt device The length of time spent in hospital after the length The and of surgery depends on the extent operation the condition of the patient. A biopsy may be performed to find out exactly be performed A biopsy may type of tumour it is.which is In some cases this all that is possible or required. However, in many tumour or spinal cord cases of childhood brain all or attempt to remove will the neurosurgeon part of the tumour. skull is opened The to the tumour and access to allow (craniotomy) replaced. the bone is usually after the operation If the child has a build up of pressure in the head (raised intracranial the head (raised in If the child pressure has a build up of to be required may operation a preliminary or hydrocephalus) pressure the tumour. attempt to remove any before this pressure This relieve by: can be relieved pressure A child or young person who has a brain or spinal cord tumour will usually or spinal cord has a brain who person A child or young centre. neurosurgical paediatric regional to a these urgently At be referred patient and stabilise their the will review specialist teams centres requires the patient a decision on whether making condition whilst surgery. surgery Brain Tumour Information Tumour Brain

If a pupil has a shunt inserted, teachers should be aware of signs of acute shunt malfunction or blockage and if concerned inform the parents: Vomiting or nausea Photophobia (sensitivity to light) Dizziness Fits Headache Other visual disturbances Drowsiness Abdominal pain In many cases the neuro-surgeon will attempt to remove the brain or spinal cord tumour entirely, or at least as much as possible. Whether this is achievable and what damage may be caused depends on the area of the brain the tumour is located in and also whether it is in the dominant hemisphere or not. The dominant hemisphere is the side of the brain that is more important for higher functions such as speech and is usually the opposite side to the handedness (i.e. left if right handed) of the patient.

Surgery

6 2 Parietal lobe Parietal area comprehension Reading Occipital lobe Sensory speech area of Wernicke Cerebellum Medulla oblongata Function areas of the brain areas Function Pons and medulla - motor control,Pons sensory analysis, of level consciousness, functions, vital body and heart such as breathing rate. Cerebellum - regulation and coordination of movement, and coordination - regulation Cerebellum and posture balance. Occipital Lobe - visual processing Temporal lobe – perception and recognition of auditory stimuli, and recognition lobe – perception Temporal memory and speech Parietal lobe – movement,Parietal orientation, recognition, of stimuli perception Frontal lobe - reasoning,Frontal planning, parts of speech, movement, emotions solving and problem Specific areas of the brain are not separate working units but part working of an not separate are of the brain Specific areas system and dependent on each other.inter-related means that if the This that a particular it is to be expected parttumour has damaged of the brain be affected.certain skills may However, means that the inter-connection skills could also be affected.unexpected Similarly, to certain damage parts each for in the same problems result does not necessarily of the brain is different. brain as every person Pons Temporal lobe Temporal Motor speech area of Broca Frontal lobe Frontal The diagram below shows the areas of the brain with their the brain of the areas shows below diagram The associated functions. chemotherapyfor brain & spinal cord

Brain Tumour Information Tumour Brain tumours Chemotherapy drugs work by interfering with the ability of a tumour (cancer) cell to divide and reproduce itself. The cancer cells become damaged and eventually die. As the drugs are carried in the blood, they can reach tumour cells within the brain. Chemotherapy can be given in different ways, either by mouth or intravenously. Treatment has to be carefully planned so that it progressively destroys the tumour during the course of treatment, but not the normal cells and tissues. The duration of chemotherapy varies from as little as eight weeks to as long as two years. Children and young people undergoing treatment for tumours (cancer) will often require repeated blood tests and insertion of needles to enable chemotherapy and other drug treatment to be given. Many patients therefore have a special device called a central line, which is used to take samples of blood and to administer chemotherapy and other drugs (such as antibiotics). It can also be used to give blood or platelet transfusions. A central line is a fine plastic tube, which is inserted into a vein in the patient's chest. This procedure is carried out under a general anaesthetic. There are two types of line; one that comes out of the skin (Hickman line) and one that is buried under the skin (Port-a-Cath). In the treatment of aggressive brain tumours higher doses of chemotherapy are sometimes given, to improve the chances of completely curing the disease. As chemotherapy interferes with the production of the blood (in the bone marrow), very high doses can only be used if the bone marrow and blood are supported by initially collecting and then giving back “stem cells” to rescue the patient from the effects of high dose treatment. High dose chemotherapy requires the patient to stay in hospital for several weeks to receive supportive care.

1. Central line inserted into the chest here 2. The line is tunnelled under the skin The line comes out here Box underneath skin

Hickman Line Port-a-Cath Line

Chemotherapy

8 2 Fatigue or spinal cord a brain for of patients being treated majority The at some point. fatigue from tumour will suffer Chemotherapy and both physically easily more in them tiring will result mentally. need school attendance and activities may Therefore this. for to be modified to allow Hair loss hair the pupil’s make used in chemotherapy of the drugs Many out.fall within a few quite normally again grows It usually months of stopping treatment. can be an upsetting This a wig, wish to wear and the pupil may problem baseball cap, hat or scarf. that for to be modified have may School rules particular pupil. Loss of appetite and weight affect sick and directly the pupil feel make may Chemotherapy to eat and will the lining of his gut so that he will not want lose weight. effective. very now are Modern anti-sickness drugs will be checked regularly. weight Their If he/she is losing too a naso-gastric through need to be fed he may much weight (tubes passing into the stomach). tube or a gastrostomy is over. treatment to normal when returns usually weight The Risk of infection of infection. at risk be more will person the child or young chemotherapy All through When his or her own from germs absorb may the patient (neutropenic) cell count is low the white skin or gut. perfectly most minor infections will be able to cope with In spite of this they can attend school. he/she is well person and if the child or young normally However, some serious. more prove may cause little trouble that usually infections Measles and chicken pox is not immune. if the patient can be particularly serious to either of exposed are If they these (this means close contact e.g. with an infected directly in the same class or playing person), injection or medication can so that a protective away straight know let the parents be given. or has a fever, unwell If the pupil is generally immediately. the parents inform 111. Letter on page Pox See Measles and Chicken Bone marrow suppression (Low blood count) blood count) (Low suppression Bone marrow suppression. causes bone marrow Almost all chemotherapy means that the bone This may or platelet transfusion of cells and a blood the usual number cannot make marrow be necessary. cell count is low, the white When quite common. are infections Side effects of chemotherapy Side effects cells, killing dividing by works Since chemotherapy cells dividing normally affect will they as tumour cells.as well those are in the body divide most rapidly normal cells which The in the bone marrow, the hair follicles. the gut and the main temporary are following The treatment. of as a result be experienced may which side effects forradiotherapy brain & spinal cord

Brain Tumour Information Tumour Brain tumours Radiotherapy uses high energy x-rays which destroy tumour cells. It is used to treat the site of the brain or spinal cord where the tumour is located but sometimes the whole brain and spine so as to prevent the tumour from spreading to these sites. Radiotherapy is given each day Monday to Friday with weekends off. How long a course of treatment lasts is variable, but it may be anything up to six weeks. Before treatment begins it is necessary to undergo what is known as 'planning'. This allows the radiographer to work out the exact position in which to place the patient, and ensures that treatment is given to exactly the right place each time. Radiotherapy is painless and usually only takes a few minutes each day. During the treatment the patient must lie perfectly still to ensure precise delivery of the radiotherapy. In order to facilitate this, a “mask” is often made by a mould which the patient wears during treatment and this fixes their position to the radiotherapy machine. Sometimes it is necessary to give an anaesthetic to help the patient lie still. Radiotherapy is a very effective treatment against cancer cells but it can cause some damage to healthy cells close to the area being treated. The immediate side effects of radiation are usually mild and include: The skin may become sore as if it were sunburnt Hair loss which can be permanent Nausea and sickness Sore mouth and diarrhoea Headache Fatigue ‘Somnolence syndrome’ develops 6-8 weeks after radiotherapy to the brain resulting in irritability, fatigue, mild headache and high temperatures. Radiotherapy can cause some longer term side effects which will not be instantly apparent. As time goes by the effect of radiation to any growing tissues may become more noticeable.

Radiotherapy

0 3 y change over time. over y change Children treated for brain tumours may develop learning difficulties and learning difficulties develop may tumours brain for treated Children help at school. special require may will of these difficulties extent The tumour,depend on the type of brain of age the the child, treated, were they when and the received. they dose and volume treatment It is radiation caused by thought that the damage in the ability of the child to leads to a decrease peers. to healthy tasks compared learn new Thus not static but gradually on intellect are the effects time. over prominent become more gap The tumour and his or the child with a brain between widen. therefore may her peers Intellectual development and education Intellectual development Sensory impairment of visual problems can lead to the development radiotherapy Occasionally forming. or cataract to the optic nerves damage either from However, this is unusual. a combination of the tumour, by can be impaired Hearing and radiotherapy.chemotherapy checks vision and hearing are Regular performed. Radiotherapy to the brain may affect production of growth hormone in the of growth production affect may to the brain Radiotherapy pituitary gland. and development growth pituitary gland helps regulate The childhood to adulthood.from hormones. producing It does this by a If the hormone from enough growth does not produce person young treatment need and may normally pituitary gland he/she will not grow injections. of daily hormone in the form with synthetic growth Other including thyroid,hormones can be affected cortisol hormones and the pubertycontrolling and the kidneys. and also need replacing may These regularly. tablets to be taken require may Endocrine and growth problems and growth Endocrine and development. on growth important effects can have Radiotherapy bones: growing affect It may example, for to the is given if radiotherapy spine, quite as tall as expected. not grow may person the child or young Longer Term Side Effects of Radiotherapy Side Effects Term Longer and young tumour children or spinal cord a brain for treatment After identify to monitor their health and up clinic a follow people will attend and its treatment. the tumour from resulting long term effects Long term tumour and particularly the from can result which side effects include: radiotherapy It is vital to continually assess and reassess pupils as their learning difficulties their learning pupils as and reassess assess to continually It is vital ma and needs offollow brain & spinal up cord tumours

Brain Tumour Information Tumour Brain The end of treatment is obviously a time of mixed emotions for the patient and their family. On the one hand is the delight of finishing treatment and on the other, the uncertainty of the future and the reality of further struggles to achieve a normal family life. Unfortunately many children and young people with a brain or spinal cord tumour will relapse with re-growth of the tumour. Therefore they require regular follow up visits to the oncologist (tumour specialist), and often regular brain scans are required. These visits can create stress in the patient and their family. The timing of follow up visits vary but initially they are every 3 months.

Follow up of Brain and Spinal Cord Tumours

2 3 . Oncologist Endocrinologist Paediatrician Community Ophthalmologist Audiologist Child Psychiatrist Social Worker Clinical Psychologist Physiotherapist Therapist Speech & Language Occupational Therapist Nurse Outreach Hospital Teacher With time the focus of follow up becomes less of follow time the focus With on and more tumour relapse on trying to detect tumour and of the the side effects addressing its treatment. means that the child may This health care more with even come in to contact treatment, than during professionals including: clinical supervision co-ordinated ensure To often seen in a special clinic known patients are as a ‘long term’ or ‘late effects’ clinic. Here they health, for assessed periodically are growth, and behavioural,development emotional or education problems. be will usually person child or young The until adulthood (18-19 up in this clinic followed up will be their follow when of age) years adult clinic for to a specialist transferred and spinal cord of childhood brain survivors tumours. of time (often 10 years a period After patients to for be appropriate it may or more) practitioner the general up by be followed The recovering pupil may be too poorly to work but will still be interested in school ‘gossip’. while absent from school Few brain tumour patients spend a Returning to School Returning long time in hospital but they may still be absent from school due to the severity of the treatment and the daily practical demands of radiotherapy, etc. However, quite a lot can be done to include the pupil: Visit the patient – small groups are best and always check with the hospital, the pupil and parents first Send get well cards and letters – not just when the class finds out about the illness but at regular intervals Encourage individual pupils to make contact, particularly close friends Make a video-diary or take photographs Send E-mails, MSN or mobile phone texts

While Absent from School

4 3 ” The help offered by the hospital by help offered The One teacher commented, One teacher invaluable.Westaff was all were the shock of Mary’s from reeling illness and quite unable to think and should we about what straight shouldn’t do or say.Talking it helped and instead of through helpless feeling totally positive had ideas of suddenly we things to do. “ ”

When Emma’s registration, is called during name When someone and behaviour sibling. their adjustments while huge to make Some will have supporting or sister in hospital the sick brother away are parents school informed if you have their permission to do so have if you school informed are away.are them It helps the class to remember informed of activities at school this will help them all to still and informed included feel Be aware that there may be changes in the ill pupil’s appearance appearance ill pupil’s in the be changes may that there Be aware Make contact with the parents for regular updates and keep the updates and keep regular for contact with the parents Make Send circular letters to the home; letters Send circular to be kept still want the family Support brothers and sisters who may be anxious about their ailing about their be anxious may who and sisters Support brothers

Continue to call their name on the register even if you know they know if you even to call their name on the register Continue “ usually provides an update. an provides usually Having a home tutor should not stop the pupil from getting to school now and then for mainly social reasons.

A member of the hospital staff will usually make contact with school in order to discuss the following: Treatment plan and information about a possible return to school Measles and chicken pox can be life threatening to a pupil receiving chemotherapy or radiotherapy. It is advisable to send out letters to all parents asking them to alert the school if their child, or anyone they are in contact with, falls ill with one of these diseases. (A measles and chicken pox pro forma letter can be found at the back of this publication.) In-patients are usually taught by hospital teachers. They may liaise with you and ask you to send home some work so that the pupil is covering the same syllabus as the rest of the class

Returning to School Returning Creating a link for further communication between school and hospital. As a teacher you should feel able to ring the hospital for advice and information on how best to manage the pupil’s reintegration or any concerns which occur regarding the pupil generally Supporting the family and school is important. Immediate strategies will be shared between hospital staff and teachers Home-tuition may need to be put in place. The school will have to liaise with the parents, the LEA and possibly the hospital teacher. A pupil is entitled to a home tutor after 15 days’ absence from school. They can reasonably (and legally!) expect to receive a minimum of 5 hours tuition per week. In some education authorities or in circumstances where a pupil is due to sit public exams it is often more than 5 hours. Having a home tutor should not stop the pupil from getting in to school now and then for mainly social reasons. Attendance at school is always to be encouraged and social visits should not jeopardise the arrangement for home tutoring. Educational support and / or statementing issues may have to be looked into at this very early stage A part-time timetable should be considered Special considerations and arrangements regarding exams will need to be planned

“”Visiting him in hospital made it all more real.

Welcome Back to School

6 3 ” ” The pupils have The actually learnt learnt actually from deal a great all this.Valuable lessons for the future! “ I dreaded going back to school – I dreaded but they were all so nice about it. were but they oe was physically and mentally physically oe was “ unprepared for school so he and his for school unprepared with came to an agreement parents Year. of and Head Joe Tutor his Form he felt able to come and go as was to return enough able to until well schooling. to regular turn would Joe On occasional days to meet his friends up at lunchtime and spend the first lesson of the class.The in afternoon teachers all knew not to expect regular Joe. from attendance or work understanding sympathetic Their meant that of his limited energy into reintegration eventual Joe’s easier and he was school experienced less social isolation, in increasing factors all invaluable confidenceJoe’s and recovery. J

Some pupils still harbour a genuine fear of a relapse and this may and of a relapse fear Some pupils still harbour a genuine aspect of school life.undermine every need to be may worry Their and to the attention of parents and brought acknowledged repeatedly health professionals, after the acute illness. years even To minimise negative outcomes the young person is encouraged to return is encouraged person outcomes the young negative minimise To to school after initial treatment, as soon as possible a few for if only even each week. or half days hours to school routine Socialising and re-adjusting in physical changes over enough without the additional worry is hard appearance, or bullying. behind with work falling Returning to school can be daunting for a brain tumour pupil and also for a brain to school for can be daunting Returning the school itself. of worry isolated after a period socially feel pupil may The treatment.and debilitating as physical altered self will have sense of Their place. taken have changes and psychological and motivation Confidence nonexistent. level their energy be at rock bottom and may worry Many deadlines. meeting coursework and about missing work back to school back to welcome Open and frank discussion about cancer and questions answered honestly can provide a new level of awareness and learning for both staff and pupils.

Possible strategies At the onset of the disease find out how much information the family wants to share with staff and pupils at school. The family may change their views as treatment progresses Try to meet with the pupil and his / her parents before returning to school, either in hospital or at home Listen to concerns – arrange for regular progress checks. Arrange for the pupil to feed back to an identified member of staff with whom they have a good relationship Reassure by informing them of possible strategies to put in place, whether adapting the physical surroundings or allowing special considerations Returning to School Returning Invite outreach nurses or hospital teachers to speak to the staff, class or entire school about the pupil’s brain tumour, treatment and side effects. (Discussed beforehand with the family)

Welcome Back to School

8 3 ” ”

We had no idea what to tell the other pupils. to tell the other what had no idea We

Brian’s teacher arranged for the outreach nurse and the hospital nurse for the outreach Brian’s teacher arranged related anxiety may escalate to school refusal or escalate to school refusal may anxiety related ‘school phobia’. be sought Specialist advice should is used to dealing with staff the hospital where from this problem. hospital teacher nurse or outreach The helpful advice and ideas can often offer accommodate for individual circumstances may be may individual circumstances accommodate for needed at first and the pupil could start by attending their favourite attending and the pupil could start by lessons and / or lunchtimes. can then be Attendance depending on their confidence increased gradually of fatigue.and level will pace of re-integration The one pupil to another from greatly vary friend in lessons to begin with in lessons to begin friend classes, teachers, support staff and supply problems can be discussed – by the pupil, – by can be discussed problems their parents, and pupils other teachers and their schooling A separate and individualised timetable to A separate Ensure as much continuity as possible regarding as much continuity Ensure Try to create an atmosphere of support an atmosphere where to create Try Be aware of the impact of a brain tumour on siblings of the impact of a brain Be aware For some pupils,For to school and returning difficulties Re-integration to school may need to be gradual need to be gradual to school may Re-integration Make sure that the pupil can sit next to an identified that the pupil can sit next sure Make teacher to visit Brian’s class before his return to school. his return Brian’s class before teacher to visit was Brian not to.The but he decided to be present invited told the class nurse and side-effects.A the treatment tumour and about Brian’s brain rag Brian how to the class used to illustrate was the hospital doll from had no hair,now had a Hickman line in the chest and could not go and asked interested very rugby.The or play pupils were swimming their understanding.Thelots of questions to increase hospital to and supportive friend could be a good teacher they told them how Brian, the or getting around work might help him with they how catch school.They would Brian about how concerned genuinely were to find and keen to say exams out what were and up and cope with to Brian. not to say what

“ “ Returning to School

9 communication performance. istoopreparedschool toacceptalow level of aparent may feel thatthe Alternatively, due totreatment for abrain tumour. sufficiently afterapupil’s cognitive decline parents have notadjustedtheirexpectations teachers may feel thatthe For example, expectations regarding academicperformance. themselves may holddifferent each Parents andteachers aswell asthepupil may have adifferent perspective onthepupil. possible difficulty where parents andteachers areas of however, There are, needs inschool. understood inorder tosuccessfully meettheir person’s educationalandsocialneedsare fully teachers inmakingsure thattheyoung Parents are potentially very usefulalliesto need for asociallife aswell. difficulties and cutacross the young person’s Homework may thencreate real after school. butare tired andstressed athome are coping, Some pupilsdomanage toappearasifthey which may besuccessfully masked inschool. aware ofayoung person’s internalstruggles Parents are oftenmore educational practice. ofgoodwith parents isan essentialpart Establishing openlinesofcommunication with thefamily deal tohim. would meanagreat range andthis average’ perform inthe ‘above he would beableto with abitmore support His parents feltthat achievement. lower academic esteem becauseofhis suffered aloss ofself and disappointed himself was bitterly John sit hisGCSE’s. was even planningto delighted thatJohn The schoolwere range. within the ‘average’ attainment fellto tumour hislevel of treatment forhisbrain to schoolfollowing Onhisreturn subjects. with topmarks inall academicallyhigh flyer John was previously a

Communication with the Family

0 4 ” ”

The last thing they need is for school last thing they The share worries.share to appear not want may Parents demanding or overanxious. Teachers, on the other hand, to parents’ sensitive are difficulties worries. additional not wish to raise and may to communication. as a barrier serve If happy and the pupil concerned are parents within the to be shared information for school, it should be disseminated to all updated. staff and be regularly relevant A misguided concern over confidentiality can A misguided concern over Both parents and teachers may be reluctant to be reluctant may and teachers Both parents to get in touch – or so I thought! “ Parents should be encouraged to pass on should be encouraged Parents all relevant regarding to teachers information medical care.aspects of the pupil’s Some parents about reservations real have people may or young about the illness and openly communicating difficulties.related a desire stem from may This to normal’‘return to and so try to minimise the of illness. stigmatising effects potentially Their a be it may although wish needs to be respected of tension,source feel particularly if teachers to help the young in their efforts thwarted person. time, Over become willing may the family openly. more information to share in their children’s role a critical play Parents and information hold key education because they insights. unique knowledge, have They strengths to and should be encouraged and experience them with teachers. share It is hard to know what to expect. to what to know It is hard soft? or too demanding I too Am “ Returning to School

1 “ “ Be aware that: They have allbeenbrilliant! expect metosay?expect details! gory What doesshe her mothertellsmeallthe utr,religion andcustomsoften Culture, Privacy andacomfortableenvironment The entire family isexperiencing severe Arrange for asympatheticinterpreter in coping alldeserve respect Different ways of talk aboutillness. influence theway families dealwithand English cases where thefamily speaklittleorno direct andnonverbal communication young person aspossiblewith asmuch across from thefamily andincludethe Sitwithrather than issues are discussed. can helpinsituationswhere difficult plans for thefuture and confusedfindithard toconsider They may feel isolated stress andtrauma. We hadnoideajusthow theschoolcouldbe. supportive I don’t quiteknow why I don’t ” ” “ helpful atall. areexpectations not and herunrealistic any more thannecessary not want toworry her butIreallysupportive do Mum isvery ability. conditionand pupil’s accurate picture ofthe issues andgetamore todiscusssuch staff contact with hospital I would like tohave direct hormonal teenagers! than you getfrom other simply nomore orless illness ormedication episode isduetothe what a extent ‘snappy’ sometimes unsure to As a teacher Iam As ateacher ”

Preparing and Supporting Staff

2 4 ” Jane had been reassured by her Head of her Head by had been reassured Jane “ Year that she could wear a cap to school. that she could wear Year of the all her hair as a result She had lost chemo and radiotherapy. She was teacher to the a new when distressed school shouted at her and insisted that it was off cap the as wearing she take against school rules.

between staff is important staff as between Often the information remains Often the information a photo of the pupil with relevant

and

Attending PE and going outside at break time outside at break PE and going Attending Amounts of work or homework Amounts of work Seating plans Unusual behaviour Unusual Drinking or snacking Drinking Parents or supporters in class Parents Coming and going – attendance and going Coming Coursework deadlines Coursework Wearing a hat,Wearing cap or bandana Visits to the toilet Visits information in the staffroom for teachers’ for in the staffroom information planners, via the school information or distribute intranet. of staff supply to acquaint any Be sure illness and needs. the pupil’s Display Communication Be flexible about: Be flexible

Normality, routine, and inclusion goals achievable tumours, with brain important all pupils are for those with a poor prognosis.even All staff, ladies and helpers,including dinner should be of the illness and consequences as long as aware to this. agreed have the family school may The and procedures. rules review need to temporarily preparing It is important to have an effective way of way an effective It is important to have communicating individual pupils’ needs to all staff. relevant is communication with the pupil,is communication and the parents peers.able to cope may or is the pupil feels How to day. day from fluctuate greatly Some get a check-up at hospital before nervous increasingly about work. or worry Year, other with the SENCO or Head of leaving in the dark. teachers supporting staff Returning to School

3 “ with thepupil’s permission. ifappropriate andonly classroom activities, other members ofstaff oroutsideagencies. so butbeabletodraw ontheexperience of Teachers shouldnotfeel compelledtodo dying. effectively topupilsabout illnessandfear of Some teachers may have difficulty talking to offer support. torecognise feelingsIt isimportant such and them. cancer andthismay bring upraw emotionsfor Some staff may have personal experience of thestaff.Support emotional orprone totears andtantrums. and are likely tobegenuinely sensitive and They may finditdifficult toreadjust hospital. after having beenthecentre ofattentionin Some pupilsmay trytoexploit theirsituation and discipline. Maintain expectations ofbehaviour well being. behaviour oremotional academic performance, Staff may noticechanges in and friends. whileto attendschool looked afterby family Siblingsmay findithard parents andrelatives. resentment atexperiencing lessattentionfrom emotions ofworry and concernmixed with There canbevaried their sibling’s illness. They commonly experience stress asaresult of siblings. Make staffaware oftheneeds Integrate Prayers justdonotitforeveryone! I told the head that as a staff weI toldtheheadthatasastaff needtotalk. discussion oftheillnessinto ” “ himself orus. taking itouton very frustrated, limitations sohegets ofhis teachers keep reminding self-conscious to Paul istoo teacher. individual subject down tothe not filter giving themjustdoes information we keep somehow the But arrangements. individual Paul tohave are very willing for They sympathiseand really understanding. the deputyhead found theheadand commented, One mum We have always have We ”

Preparing and Supporting Staff

4 4 ” A relative of hers of A relative Miss Jones was so was Miss Jones upset. has just been through a through has just been a with similar scenario negative outcome! “ ”

As soon as his mum told me he was due for a progress scan at scan progress for a due he was me told mum as his As soon and cultures within a school and cultures Some matters are outside the mandate and expertise outside the mandate and of teachers are Some matters Confidentiality issues can sometimes conflict with the need for issues can sometimes Confidentiality advice sound and practical Staff may find that strong emotions are being stirred in themselves being stirred are emotions find that strong may Staff or their colleagues. need to be available Support may Bullying and teasing is always a potential problem and teasing is always Bullying There can be potential conflicts between the values, can be potential conflicts between There beliefs, customs “ the hospital it clicked why he had been so ‘stroppy’ so he had been why it clicked the hospital lately. Be aware that: Be aware Returning to School

5 supporting peerssupporting the family. in totalagreement withthepupiland information passedtopupilsmustbe Any discussionsinclassor Important: from thetreatment centre. nurses andespecially hospitalteachers local community nurse ortheoutreach nurse theschool or tumour patient, theparents ofthebrain able tohelp: others may be what tosay toaclass, findsitdifficultthe school toknow If Preparation ofclassmatesisimportant. when thatgap isbridged. It canbeahuge relief toallparties trauma they are going through. no knowledge orunderstanding ofthe from theirpeersthem apart who have sets hospitalisation andtreatment, the anxiety, brain tumour, find thattheexperience ofhaving a Someyoung people before they occur. may beanticipatedandprevented even Avariety ofproblems be invaluable. can or totheentire class oryear group, friends ofapupilwithbrain tumour, Talking sensitively totheimmediate passive role. the young person even ifonly ina shouldbemadetoinclude opportunity Every into thegroup onceagain. upwithpeersto catch andtofitback The brain tumourpatientislikely keen preparing “ i,though. him, still tease with Paul.We we know nottowrestle and Because ofthetubes ” “ “ “ around theschool. someone tohelpRichard get volunteers when Iasked for lessons sooner! Getsmeoutof for him. important forhim. important and was socially very oftheteam him tofeelpart allowed and scoring.This and assistwith refereeing him toturn upformatches The encouraged PEteacher football matches. season’s not physically joininthat There was of noshortage I like tocarry hisbags James was upsethecould ” ” ” “ I was amazed to see how genuinely concerned and supportive the class could be.”

Points to address when talking about how to be a good friend: “ I let them all Realise that wearing a cap / hat is partly to keep warm, but most importantly look at the to cover a traumatic loss of hair. All teenagers worry about their looks, bump from the particularly hair, so quiet acceptance or compliments about the hat would be in shunt and told Preparing Peers and Supporting order! them about it. Understand that mood swings are likely and not to take them personally Some of the Be aware that when the brain tumour pupil snaps, ’I don’t want to talk about girls were very it!’ it usually means just then and not forever squeamish at first but now Keep in contact if the pupil is absent. If they are too poorly to chat on the it’s cool. phone or receive a brief visit you will be told by the parent. Try again later. A ” text message, MSN or Hotmail is another good way to maintain contact If they are too poorly to consider work they may still welcome ‘gossip’ from school. Keep them informed, even if they cannot take part Invite the friend to parties, etc. but understand if it may only be for a short while or not at all. Continue to invite them every time If a supply teacher unfamiliar with the situation begins to hassle the pupil for wearing a cap or leaving the room, explain the situation so the brain tumour pupil does not have to defend themselves – again! The pupil could carry a note in their planner with a brief indication of the situation and special provision required Do not bump in to or wrestle with the pupil. They may have a Hickman line or Port-a-cath in the chest or a shunt in the head. Or they may just be feeling delicate Try to include the pupil in activities such as drama or swimming even if they cannot actively take part Offer to carry bags or books for your friend if they are weak, tired or unsteady Allow the pupil to photocopy your notes, give them access to homework or help them catch up. They have usually missed a great deal and their pace of work may be slower Be prepared to escort your friend to the medical room or elsewhere Never stop supporting your friend – even when they are boring or grumpy. They still need you to be supportive Stand up for your friend if others in the school make insensitive comments or take the Mickey. Report name-calling to staff It is important for the school to support the sick pupil’s peers. Allow them opportunities to talk about their feelings and worries. Reassure them that brain tumours are not contagious and are very rare! 46 Returning to School

7 or pupils. tospeakstaff in to school teacher invite anoutreach nurse orahospital In somecasesitmay beappropriate to and cruel commentsare notuncommon. Teasing shown how toprovide support. and understanding butmay needtobe Friends canbevery atschool supportive about thesituationtowhole class. agrees itmay beappropriate totalk Ifthe pupil just sympathetichandling. pupil may needspaceortimetotalk The should beinformed ofthesituation. With parental permissionallteachers the family candoagreat dealtohelp. a pupilmay befacing during illnessin Teachers who are aware oftheproblems relatives andneighbours. home orby achanging successionof they are beingcared for away from complete homework simply because inappropriate clothesorisunableto wears to bring itemstoschool, Teachers may findthatthepupilfails Daily routines are oftendisrupted. resentment and guilt. including anxiety, uncomfortable mixture ofemotions, Siblingsmay beleftwithan siblings. andlessattentionfor presence athome, inevitably meanslessofaparental it but whatever arrangement ismade, Someparents share thisrole, at atime. sometimesfor months with anillchild, Often aparent will live inthehospital huge changes totheirusualway oflife. Families ofvery illchildren have tomake problems. for themtoexperience adjustment Research hasshown thatitiscommon deeply affected inavariety ofways. person diagnosedwithcancercanbe The brothers andsisters ofayoung siblings “ tears ofrelief. the holdingback difficulty –Ihadreal place.” same half anhourlater, that shewill collectyou “Your neighbourrang tosay bent down andwhispered, She walked towards me. sheer terror when Miss I was trembling with me. too busyandupsettotell and thatmy parents were that my brother haddied AllIcouldthinkwas fear. and my with mouthfeltdry Ihadgoose bumps knot, immediately tiedintoa with apassion!Mystomach a look Ihave cometoresent heads slantedinsympathy, direction with sadfacesand They bothlooked inmy message forMissJohnson. walked intoourclasswith a day theschoolsecretary The sisterofapatient: I clearly remember the ”

Siblings

8 4 ” After the nurse spoke to the class she spoke pop in to to agreed Lauren’s sister’s class. just as had They questions to many ask.The sister looked I almost so relieved! don’t I feel who know for! sorry most “ ”

We don’t seem to have much of a family any more. don’t any of a family much We to have seem parents about their achievements parents number of different ways. of different number Anxiety, mood, low or angry outbursts all common achesomatic symptoms such are as headache or tummy conversely, already not to worry in order illness symptoms ignore parents overburdened what is happening to their sibling.what hold to take likely more are Fantasies to date medical picture. about the up informed if the sibling is not kept pass they information a dilemma about what experience may Parents on to siblings, point in time. and at what be on this must views Parental respected, to report to parents staff for be appropriate although it may in their pupils observe they which undue anxiety any illness is their fault, unsettled issues or have being healthy guilty for feel or sister with their brother feelings of resentment feelings be very hurtful,be very isolate pupils. cause panic or to prevent way best The is to be honest, or deal with them rumours questions frankly answer empathy and create Channel attention towards the pupil’s interests and provide feedback to feedback provide and interests the pupil’s Channel attention towards If appropriate, outlook a positive pupil in keeping help the The additional stress experienced by siblings can manifest itself in a siblings can manifest by experienced additional stress The The pupil may irrationally imagine they are ill like their sibling or ill like are they imagine irrationally pupil may The Some pupils may be very scared and have frightening fantasies about fantasies frightening and have scared be very Some pupils may Feelings of guilt can be strong and debilitating. of guilt can be strong Feelings the feel pupil may The Pupils may feel keenly the loss of parental attention, the loss of parental keenly feel Pupils may can lead to which Rumours about illness can quickly gather momentum in school. gather can quickly about illness Rumours can This “ Some points to be aware of: to be aware Some points I can understand why everyone always asks after “my brother, but I sometimes wish they would also worry a bit about me.”

If the treatment ultimately fails the sick bother or sister may die. Their sibling is probably left in a whirlpool of emotions and may need sensitive support for a long time. The school will need to inform the student body, but the sibling’s needs must be sensitively considered before announcements in class or in assembly are made, or at future memorial ceremonies such as a tree-planting.

Organisation offering support for brothers and sisters: ‘Siblinks’ Website: www.siblinks.org Email: [email protected] Returning to School Returning

Tests and Exams

0 5 ount of work. Her Sophie returned to school after to school Sophie returned six months absence at the start 11.Year of clear she It was up to keep be struggling would studying the demands of with and attending lessons for 9 GCSE subjects. After discussion Year and Tutor her Form with Head, decided that she it was 5 only with should continue GCSE subjects. tutor Her contacted the college Sophie to attend to findwanted out essential 5 subjects were which course.Thefor her chosen other leaving dropped subjects were on a Sophie time to concentrate manageable am the understood had clearly school of not setting Sophie importance up to fail.

In some cases the only realistic solution for a pupil who has who a pupil solution for realistic In some cases the only year. a amounts of schooling is to repeat missed large some For a sigh of will breathe others idea while this will be an abhorrent relief. about and be flexible Discuss the possibility sensitively joined. groups and year subjects taken also need to be It may in the L.E.A. staff discussed with senior education have may who placing in education. out-of-age a policy of not allowing A sympathetic discussion between the school’s exam officer, exam school’s the A sympathetic discussion between forward the best way regarding the candidate and the family worry to reduce as possible in order as early should be arranged and uncertainty. so, Even the concessions cannot remove exam some provide the candidate but may by faced difficulties time. anxious assistance at a very It is important that the school or exam board gain an accurate gain It is important board that the school or exam amounts of talents and abilities if large of that pupil’s picture been missed due to prolonged have schooling and coursework illness. All tests and exams present their own problems and difficulties problems their own present All tests and exams tumour. people with a brain young for how fear may pupil The about the future worry as well as will cope in an exam they a poor performance.consequences of to accept having face They were they before hoped for might have than they results lower ill. might shatter their morale. This and exams tests Returning to School

1 “ for theillness. .Access arrangements delegated to 1. There are two typesofaccessarrangements: effects willfall intothiscategory. a brain tumourwithsignificantandlastingside- Someonetreated for willbeeligible. disabilities, orwithavariety oflearning impairment, profound hearing lossorsight disabilities, Those withphysical must alsomeettherequirements oftheassessment. They are basedonahistoryofwell establishedneedbut early aspossible. Access arrangements cover theentire course andshouldbeappliedfor as Access Arrangements strategiesSchool for publicexams: I know he would have donesomuch betterhaditnotbeen the examination centre: Bilingual Dictionaryfor useby candidates Prompter Transcript Separate room Rest breaks andfood ordrink Additional orextra time-up to25% Arrange for enhancedgrading ortransfer ofcandidateincase thepupil Apply for specialconsideration immediately following thestudent’s Apply toorinform awarding bodiesofaccessarrangements well Arrange for up lessonstoenablethepupilcatch curriculum support Reduce thenumber ofsubjectstaken tothemostelementaryonesor (Not for Englishandforeign language exams) arrived in Britain lessthan two years ago Welsh and25%extra timefor pupilswho Irish or whose first language isnotEnglish, recognised examination centres Many are hospitalschools is hospitalisedortooilltosittheexam. exams. able tooffer assistanceintheform ofadviceormedical documentation The treatment centre shouldbe in advance oftheexams ifpossible. ifappropriate stage, Perhaps they canre-sit atalater those mostenjoyed by thepupil. ” instantly userfriendly. to photo-copy and itwas easy planned, on work missedor required information hospital teacher home tutoror absent orifaparent, If any pupilwas potential inspectors. learning rather than at pupilsandtheir The folderwas geared assignments. course work and over-view oftopics, of noteswith an kept adetailedfile visited theteacher In oneoftheschools

Tests and Exams

2 5 body for approval for body Use of British Sign Language Use of British Word Processor Word Practical assistance Practical Scribe (previously known as amanuensis) known (previously Scribe Modified examination question paper Modified examination Reader Additional time over 25% time over Additional Always apply for access arrangements as early as possible. as early access arrangements for apply Always Rules and guidelines to the next. one year from change may should consult the Joint Council Teachers “Rules and in published annually are (JCQ) guidelines which Qualifications for in Adjustments Reasonable for Candidates Eligible to Guidance Relating Examinations”. Transfer of candidate Transfer the made for are their school but arrangements by exams for is entered pupil The elsewhere,pupil to sit the exam such as in hospital. Where a candidate has missed an exam or unit of work altogether, or unit of work has missed an exam a candidate Where an adjustment to been satisfied. have requirements can be made as long as minimum the final grade 35 between – usually greatly vary enhanced grading for requirements minimum The – 50%. not met an exceptional are requirements minimum where In cases be made. may award circumstance Enhanced grading Apply for this if you consider that a ‘health crisis’, consider that a this if you for Apply the long-term caused by possibly illness,occurred. has to the assessment and relate itself during manifest must This conducted. was the specific time the exam of marks up to a maximum An allowance cases exceptional in be given of 5% may Special consideration 2. application to the awarding requiring arrangements Access Returning to School

3 “ “ group onceagain. He was sograteful nottohave tostand outfrom the helped. otherpupilsdidnotalways know how Simonwas system.The without oncemakingSimonfeelthathewas adrain onthe Simon really neededthatextra timeandtheschoolprovided it was notthesameas ‘cheating’. that ‘special consideration’ problems He andreassured anticipatedSimon’s him easier. pluck up the confidence tobendthe ‘rules’. uptheconfidence pluck I’monly sorry ittook mesolongto than inthecorrect set. for herlearning andwell-being tobewith herfriends rather Teacher strategies for testsandexams: Make sure thepupilisfamiliar withany exam concessionsthathave Do notmake promises regarding grades without first having discussed It canbedifficult for pupilswithabrain tumourtoconcentrate and Liaise withthehospitalteachers orhometutors regarding course work Help thepupilplantheirrevision andprovide asummaryofwork Where possibleyou mightarrange for coursework totake theplace only testingwork Adjust your markingsystemtoallow for thegaps, Encourage themtodotheirbestandusethetestasameans Reassure thepupilthatallowances canbemadeinjudging their Mr Smith is the kind of teacher whoMr Smithisthekindofteacher justmakes lifesomuch skill thatneedstobedeveloped orpractised prior toasignificantexam For instance working withascribe –orbeing one –isa been agreed. the situationwithexam board. where frequent breaks willbepossible Arrange for aquietroom sustain attentionandthey may easily tire. covered of tests covered by thepupil show upwhere thegaps are academic performance I’ve realised now withI’ve Fatima thatitismore important ” ”

School Transitions

4 5 Based on working with Laura with Based on working her before the summer during transfer, the SENRA produced an Induction Document for it to her and distributed Laura subject teachers and to school to be in contact staff likely her.with left on was A copy to notice board the staffroom or support staff. new inform document had a picture The and at the front of Laura under contained information headings: the following Special Educational Needs, to the Site,Access Social Integration, in Position Classroom, and Concentration Work, Quantity of Differentiation,Worksheets, Laptop Computer, Literacy, Numeracy, PE and Outings. – document,The including the photograph, updated was annually! initiative a brilliant Such belongs in an ideal clearly world. Laura, For in year now 11, at secondary her years and been happy school have fulfilled and she has been able deal within a great to achieve of ability. her level ” I never really felt it was a teacher’s a felt it was really I never job to visit the home – but I am so glad – but I am the home job to visit I did. “

recommendations and strategies recommendations homework diaries and timetables is useful prior to start 7/key and timetables is useful prior in year diaries homework 3 stage clearer picture of the pupil’s abilities and circumstances and help abilities and circumstances of the pupil’s picture clearer home and between barriers communication future down break school much better to foresee potential difficulties rather than wait for than wait rather potential difficulties much better to foresee them to happen! are shared between all relevant agencies all relevant between shared are their present and future teacher or LSA and future their present pupil and parents as well as the previous teacher school. or as the previous as well pupil and parents Contact an update, for the hospital staff with the family. if cleared In particular, any a note of and disseminate it is important to make coping used at home or at school for successful strategies to meeting social and emotional needs as it can supportto meeting social and emotional and enhance of an individual pupil the academic progress e.g. physical any to check or mobility team impaired over visually in school layout problems necessary. change any teacher before them to meet with a new Allow or working patterns or working Inform all staff of the pupil’s needs, of the pupil’s all staff Inform special circumstances, useful Familiarisation with secondary school features such as lockers, with secondary school features Familiarisation Make a home visit or arrange for the LSA to do so. for home visit or arrange a Make a will give This Share information and prepare in advance as far as possible. as far in advance and prepare information Share It is Ensure that reports and written communication regarding the pupil regarding communication that reports and written Ensure Allow pre-transfer visits by the young person and wherever possible and wherever person the young visits by pre-transfer Allow Find out as much background information as possible. out as much information background Find to the Speak When ‘setting’When or ‘streaming’ try to ensure that consideration is given Secure the assistance of outside agencies to assist with preparations, to the assistance of outside agencies Secure Prepare your pupil in advance of any change and arrange support if and arrange change of any pupil in advance your Prepare Keep change to a minimum, change Keep layout, classroom whether seating plan Further Strategies: Further Strategies:

Transitions within school and between schools or college can be a time of worry and anxiety for any for and anxiety a time of worry can be schools within school or college and between Transitions person.young tumour. those with a brain is particularly so for This ability to adapt to changing natural Their and become impaired. have overwhelming may environments circumstances find different may They confusing or pupils. teachers new to know a long time to get or take transitions school Returning to School

5 and additionalsupport special Sho cin level oftheSENCode ofPractice ‘School Action’ comparisons canbemadeatalaterdate. toassessthepupilatthisstageIt isimportant sothat level oftheSpecialEducational NeedsCode ofPractice. ‘School Action’ young person returning aftertreatment toschool for abrain tumouron For thesereasons we recommend thatsteps are taken toplaceany subtle changes have occurred andmay continue tomanifest themselves. afterseriousschool andlife threatening illnessmay maskthefact that The at initialelationatseeingthepupilback oftenundetected. continues, inothers the decline sadly, Inmany casesthey improve while, effects. they may well besuffering from invisible injuryorsubtleside However, Treatment for abrain tumourmay leave your pupilseemingly ‘cured’. a year. should begiven acopy oftheIEPand itshouldbereviewed atleasttwice Parents physical oremotional. social, whether cognitive, delayed reaction, Regular reviews oftheIEPshouldreveal any lateeffects oftreatment or strategies putinplaceby tomeetidentifiedtargets theschool and goals. It shoulddescribe thepupil’s difficulties andtheprovision and up. AnIndividualEducation Plan(IEP)shouldbedrawn help thatisnecessary. The provides school any extra responsibility for theyoung person’s needs. willtake (SENCO), The SpecialEducational Needs Co-ordinator, educational need

Special Educational Need

6 5 ” years after years 2 / 1 If only we had we If only returning to school Sandra to returning LSA support offered was needed to be increased which years. the over When Sandra returned to returned Sandra When joy was 8 there school in year she had that all around of and been cured survived her tumour. to keen She was very catch up and worked despite her problems hard fatigue.with 9 SATS year Her fell short of her results clear and it was predictions had slowed that progress down.right found it Sandra difficult skills new to learn and concepts and lacked confidence and drive.The for SENCO arranged extensive testing of Sandra’s memory and concentration. than 1 – More started the sooner! process “ ” ”

Finally now I am now Finally Mohammed’s LSA is superb! He is happy every morning morning every Mohammed’s is happy He LSA is superb!

happy that the happy support she is getting matches her needs - finally! “ ‘School Action Plus’Action ‘School of Practice the SEN Code of he goes to school.That is all I want! Your pupil may return to school with severe deficits or, deficits to school with severe return pupil may Your a period over of time, with school or overwhelmed are it becomes clear that they progress.making insufficient what and above support over Additional be required. may the school is able to provide In such cases the local must,education authority consent, with parental a statutory make assessment of their needs. ‘Statementing’Assessment of Special or Statutory Need Educational With parental consent the school might benefit from speaking to the consent the schoolbenefit from might parental With a pupil after educational concerns over regarding hospital teachers treatment. and be able to offer the pupil well know already may They agencies. placed to liaise with relevant well advice and are The Local Education Authority (LEA) or health authority is able to or health authority (LEA) Authority Local Education The Therapist, such assist with specialist staff as a Speech and Language Psychologist. or Educational Teacher try to SENCO must The Specialist help the pupil. best to discussions about how in any include parents When your pupil returns to school with more complex needs, complex to school with more pupil returns your When does enough progress,not make up at a later stage, show or if problems Plus’Action ‘School need to be put on the they of of the Code level Practice. in outside the school will be involved from Specialist staff assessing or advising the school in terms of meeting the needs of the pupil.

We recommend that any young person treated for a for treated person young any that recommend We Action’‘School the on remain should tumour brain level their school of career. duration the for “ Returning to School

7 “ with allparties. it isalways best if thisisdoneincollaboration However, theparents orby professionals. school, for thepupilcanbeinitiatedeitherby the Any request for additionaleducationalsupport Education Plan)tobedrawn upandbacked up. as possibleinorder for anIEP(Individual we suggestthattheLEAisinformed assoon andeducationalresources,specialist support Given thelengthoftimeittakes toobtain that willberequired inschool. provide someadviceastothelevel ofsupport Hospitalstaffwillbeableto needs tobemet. inorderhelp withinschool for theirindividual people withabrain tumourrequire specialist themajority ofyoung In ourexperience, an annual basis. education uptotheage of19andisreviewed on The theyoung person’s statementsupports Schooling) (Seeseparate sectiononSpecialist here. The Educational Psychologist may behelpful suited tomeetthespecificneedsoftheirchild. preference better toattendanotherschool In somecasestheparents canexpress a examples ofhelpavailable. hearing impaired unitsormobility unitare all fromadvice andteaching thelocalvisually and psychological or support physiotherapy, therapy, Speech requiredhelp andsupport tomeetthem. describes allthepupil’s needsandthespecial agreed withthe parents, The LEA’s statement, Statement ofSpecialEducational Need the process of ‘statementing’! h em‘otoeltey certainly seemstoapply to The term ‘postcode lottery’ ” “ can cope. son now feelshe not give upandour Thankfully we did scream –again! almost makes me hopelessness it abandonment and of total the feeling caused, frustration it I thinkofthe butwhen support, We gotsome finally including ourMP. we couldthinkof, writing toanyone pestering and years ofwrangling, Ittook us deserved. he support battled togetthe struggled and Insteadwe all. it university tocap with A-levelsand been plainsailing probability have would inall schooling our son’s the brain tumour, Had itnotbeenfor a different person. your isalmost child hard toacceptthat As aparent itisso ”

The Role of the Learning Support Assistant

8 5

tumour. additional support need and supervision may They assessed as part of classwork and withhold inappropriate support at assessed as part and withhold inappropriate of classwork the teacher to be able to assess the pupil fairly for such times in order accurately reflects the pupil’s ability pupil’s the reflects accurately independence and confidence of any pupil and therefore needs to be needs and therefore pupil any independence and confidence of managed carefully A LSA is unlikely to have experience of young people with a brain of young experience to have A LSA is unlikely The LSA should be aware of any particular skills or knowledge being particular skills or knowledge of any should be aware LSA The The support given should be recorded support given The LSAs need to ensure pupils are supported in such a way that the work supported pupils are in suchLSAs need to ensure a way Reliance on a LSA has implications for the social isolation, on a LSA has implications for Reliance welfare, Some young people are reluctant to be ‘singled out’ to be reluctant Some people are young by their peers from support. additional classroom receiving necessary to consider how It is always LSA funded time can best help each individual pupil and meet their needs. The LSA should be involved in the planning and review of the child’s in the planning and review LSA should be involved The aims overall clear about the are Plan (IEP) so that they Individual Education will be expected that they and the strategies of their work and objectives these.to use to achieve adapting will involve work Much of the LSA’s need non- will they needs and to meet the child’s materials curriculum these,contact time to prepare as 1:1 time with the teacher where as well that will be required. the materials shown are they It is sometimes better for LSAs to work with their pupil as part helps the as this of a small group individual strengths all pupils have less isolated and to see that pupil to feel and weaknesses. fun, more working It can also make as it can be too intensive much the day. of 1:1 with an adult for pupils to be working for A Learning Support Assistant (LSA) or Teaching Assistant (TA) can provide (TA) Assistant Teaching Assistant (LSA) or A Learning Support support a pupil. for invaluable informed fully It is important are that they the pupil they surrounding about the particular needs and circumstances to supportare and, appropriate, where they the detailed information share of the staff, with the rest gather has been given. permission parental provided of the learning supportof the assistant the role the Returning to School

9 “ LSAs donot: Simon’s individual needs. Simon’s Without theLSAthere Icould noteven tomeet begin Help inappropriately Make contributions Offer hintsand Write ordraw Fail toinform Carry outpractical Make decisionsfor Complete assessed Allow pupilstotake - itcanbedisabling process to thecreative responses carefully instead elicit but suggestions, them todo pupil hasnottold anything the assistance given of the teacher tasks beingassessed the pupildecide buthelp the pupil, the pupil written work for is nottheirown credit for work which ocnetae tointeract andtoachieve. to concentrate, The calmatmosphere meansthatPaul isable Paul doesnotfeelsingledout. needs. the assistanceofLSA orotherpupilsashe He cancallon appropriately with hispeers. up hishandtoanswer questionsandinteracts heputs lessons; far happierinhisChemistry Paul is assisting theteacherinhisteaching. the LSAmoves around helpingany pupiland while surrounded by pupils, visual problems, the front inthemiddletoaccommodatehis Paul sitsat needs asprovided by theSENCO. informed by informationofindividualpupils’ has arranged aboy /girl seatingplan theteacher however, lessons, In Chemistry mainstream. He works inneartotalisolationfrom the butmeantforPaul only. subject teacher, practically runs alessoninparallel with the LSA innoisysurroundings.The ‘overloaded’ Paul isnoisesensitive andquickly feels Like many brain tumourpatients distractions. himfrom from thenoiseand ‘buffer’ to sitonhisright inorder toseparate him He wants theLSA left oftheclassaspossible. Paul chooses tositasfarthefront class. with inappropriate chattingorcallingoutin lessonsare very noisy where they want.The In Physics theteacherallows pupilstosit and Paul’s skillsinthatsubject. according tothestyleofteaching another, The LSA’s role isdifferent from onelessonto Paul isreceiving inmost lessons. LSAsupport ”

The Role of the Learning Support Assistant

0 6 Some LSAs see their role as primarily sustaining as primarily role Some LSAs see their comfort, in their being well contentment and assigned pupil.When to or is delivered Megan mother and the LSA her school collected from chat. a brief have always nearly Mum, or Megan another of events, one the LSA inform moods, they and in this process or concerns achievements and relaxed friendly a very developed have relationship. Megan’s individual and very LSA in focus and the fluctuating always needs are is able to adapt support to inform teaching or appropriate. staff where At the beginning year, academic of every the LSA, the SENCO,with up a detailed profile draws of and difficulties,Megan’s strengths a with on the front.This Megan by chosen photograph is in their member of staffhanded to every to keep the brief file and above professional is over and needs. individual summary of all pupils with able to track and observe a pupil coping brilliantly and observe able to track struggling in others. in some subjects while one person. LSAs attached to a department can subject expertise, extra provide particularly in LSAs may classes.exam several by input Various the pupil and create for relief welcome provide less dependency on the support of the LSA. pupil flounder with a task, it is sometimes interest own necessary and in the pupil’s sense of achievement pupil to work to the same speed as the rest of rest to the same speed as the pupil to work the class pupil’s strengths and independence strengths pupil’s constructive criticism constructive The flipside is that an LSA will not necessarily be flipside is that an LSA will not necessarily The LSA support need not necessarily be provided by provided be LSA support need not necessarily Although it is hard to sit back and watch a to sit back and watch Although it is hard Allow the pupil to try their best and gain a the pupil to try their best and gain Allow Show patience – it may not be realistic for the for not be realistic patience – it may Show Praise ideas and work well done – build up a done – build well ideas and work Praise Discuss problems and offer offer and Discuss problems LSAs do: Returning to School

1 should bethemainaim. socialskillsandinteraction For somebrain tumourpupils, Some practical points Homework clubsrun by LSAsprovide alogical continuation ofwork for thepupil. 1:1 interaction may insomerespects beconsidered ‘best’ The extra Enable theLSAtogo onoutingsandresidential trips. LSA keeps aworking orbluemarker black for thewhiteboard intheir Teachers needtogive theLSAplentyofadvance warning oftestsand Teachers shouldencourage LSAstowrite down how longapieceof covered inclass. slim. where particularly thepupil’s oflongtermsurvival chances are school, socialskillsandinteraction shouldbethemainaimof pupils, For somebrain tumour thismay make thepupilfeel isolated. However, apupilonresidential tripsto support andoutings. theLSAisfundeddirectly Insomeschools by theschool assessments. The LSAmay needtobeinvolved inany prior arrangements andrisk curricular learningandsocialinteraction trips onsuch canbeinvaluable. bag sothatthey can always ensure useslegible theteacher ink exams inorder tomake specialarrangements asrequired work hastaken was thepupilandwhat support given “ are herparents. happy –andso butsheis cards, really onthe progress is not Educational of friends. of herlittlegang feel almost part with Molly andI pleasure towork It is such a It issuch ”

The Role of the Learning Support Assistant

2 6 ” ” At first I was I try to help the others in class also. to be hates Shay singled out, and the also needy are friends ways. in different really tempted to really for just do the work her. It is frustrating to see her struggle so hard, but she has to – for her good. own “ “ Fred easily becomes easily Fred dizzy or disorientated work if he has to copy the board.Thefrom constant up and down of his head movement and neck is painful and debilitating after his and operation treatment radiotherapy to the back of the head. His LSA helps him out dictating or writing by to textdown for Fred copy.Whenever she can, Fred she provides a gap-fillingwith or questions worksheet to fill in on the sheet as it possible this makes the to cover for Fred of as the rest same work the class without laborious copying him down slows which unnecessarily. Many brain tumour patients suffer from severe fatigue, severe tumour patients suffer from brain Many idea that and the is unrealistic. at school after a full day homework with the pupil can cope for 1 set was tumour pupil pick-up time for a brain the taxi In one school finished after school.hour after school than immediately rather This a week. one evening after school club a drama the pupil to attend allowed the LSAs. by run club attended a homework the pupil On the other days when homework eliminated the battles at home over entirely almost This tired. too much Returning to School

3 “ “ “ physical have hadforyears. goal shooter we Andrea isthebest off! were we shunt with a ‘upside down’ about notbeing had understood it isallabout. of agameiswhat a smileattheend being abletoswim. As soon aswe all Rosy and cheeks I really missnot ” education andoutings ” ” severity orpermanent: temporary while others may beofincreasing Someare only it hard totake inactivities. part There may beotherreasons why pupilsmay find blockage. position withtheheaddown asthismay causea for thatyoung person nottoget intoaninverted may bepermanently inplaceanditisimportant The shunt fluid from thebrain intothestomach. draining Some pupil’s are fittedwithashunt, referee orscore-keeper. Barry would beinvolved as games were played, Towards theendofsessions when actual all pre-match warm upsandskillstraining. Barry would take in For part football andrugby, understood thisandfoundways toinclude him. teacher P.E. Barry’s Fortunately, illness. thiswas theworst aspectofhis and outofschool, bothin Beingsporty lessons. inP.E. participation return toschoolwith restrictions onhis resentedBarry fiercely theideaofhaving to aspossible. much they shouldbeincludedinactivitiesas However, for thepupiltotake incontactsports. part During thistimeitisinadvisable Hickman line). with askintunnelledcatheter(alsoknown asa may betemporary while thepupilisstillfitted These difficulties campsandoutings. (P.E.) lessons, find itdifficult totake inPhysical part Education treatment for abrain orspinalcord tumourwill Some young peoplereturning after toschool Hemiplegia (onesidedweakness) Poor selfconfidenceafterchanged body image Fatigue Fear injury offurther Poor fitnessafterhospitalisation Muscle weakness Balance orcoordination difficulties I hate it when people tell me what I can and cannot do. “I almost know more about my illness than the doctors. If they can trust me so should the teachers.”

Swimming While still having a Hickman Line inserted the pupil will not be able to go swimming. However, with a Port-a-Cath or a shunt, straightforward swimming should not be a problem. Physical Education and Outings Reintroduction to swimming may need to be carefully monitored. A previously competent swimmer may have become slow or weak and so needs specialist teaching to re-gain ability. They should be assessed for water safety and all staff made aware of the potential risks involved. Seizures can be a particular potential risk when in the water. Warm-up and cool-down It is good educational practice for all to take time to warm up and cool down before and after sport as this decreases the risk of strains and muscle injury. If a young person has balance and co-ordination difficulties or muscle weakness following treatment for a brain or spinal cord tumour this is even more essential. 5-10 minutes including jogging on the spot and a series of stretches at the beginning and end of every lesson is advisable. Appropriate sports and activities The benefits associated with a successful return to sports and leisure activities include fitness and physical skills as well as improved self confidence through socialising and interacting with other young people. To make participation possible and successful the teacher should:

Adapt the activity to meet individual needs Allow the pupil to build up participation at a speed appropriate to them Consider activities from a practical and social viewpoint – both are important Set different rules and goals for an individual in order to be able to participate Use yoga techniques such as visualisation and relaxation Build up skills gradually, i.e. practise arm and leg movements separately before putting them together Use verbal cues such as instructions as well as visual cues or demonstrations Ask the pupil’s physiotherapist to give advice on appropriate activities Create a ‘Can do’ culture by being creative, adapting activities, motivating and offering choices

Some pupils will try to avoid PE / Games when they are in fact well enough to participate. They may use their illness as an excuse. Hormonal or tumour related problems may alter the pupil’s weight or physical appearance. This might be a factor in not wanting to do PE/Games. 64 Returning to School

5 www.efds.net 01612475294 Tel: Stoke-on-Trent ST72HL Alsager Hassall Road Alsager Campus MetropolitanManchester University English Federation ofDisabilitySport on how toadaptactivities. The Organiser LocalDisabilitySports shouldbeabletogive teachers information www.londonsportsforum.org.uk 02073548666 Tel: London N13QP 436 Essex Road ForumLondon Sports for DisabledPeople Useful Contacts: assessment canbecarried out. to take theparent orLSAalongonany preliminary visitswhere risk It would alsobeagood idea activities canbeorganised where appropriate. Preferably they shouldbeincludedinany planningsothatalternative inviting thepupilwithdifficulties. aparent orLSAalongtosupport Instead itispossibletoattemptincludeallpupilsby discriminatory. To exclude thepupilwithdifficulties is impossible ordifficult. altogether becausetheobstaclesforfrom allseem fullparticipation Itisareal trips shameifsuch are avoided and outingsare numerous. The educationalandsocialbenefitsofwell plannedandappropriate trips tripsSchool andoutings “ on xrie Itisalifeskill! doing exercise. ALL my pupilshave tolearn tolistentheirbodieswhen ”

Specialist Schooling

6 6 ” ” As the head teacher I had to accept that we failing Daniel. were we much However just to help we wanted the did not have expertise and the resources. all It took parties a long time and a lot of anguish to come that. with to terms “ for practical life skills life practical for A sense of belonging to therapies Access Specialist facilities Specific preparation is a long way from home. from is a long way be especially may This from patients suffering tumour brain for difficult fatigue Travelling issues,Travelling particularly if the special school friends contact with existing Loss of regular specialist schooling: specialist schooling include: ainst or schooling

The first time someone mentioned Greenwood School for Alice we were horrified! were Alice we first for School The Greenwood mentioned someone time

protected view of the world view protected to be included Segregation can lead to isolation or a Segregation A feeling of being valued and understood of being valued A feeling not as discrimination It can be perceived Fully differentiated curriculum differentiated Fully Small classes Specialist tuition We could not have been more wrong. more been have not could We it. she loves and brilliant It is just Ultimately, and individual. complex the issues are of abilities, awareness A sensitive decisions taken. opportunities should guide any and fairness Arguments ag Arguments Arguments f Arguments Emotional and Behavioural Difficulty (EBD) Emotional and Behavioural Learning Difficulty (SLD) Severe Learning Difficulty (MLD) Moderate (PMLD) and Multiple Learning Difficulties Profound (VI) Impaired Visually (HI) Impaired Hearing Handicap (PH) Physical Dyslexia (ASD) Disorder Spectrum Autistic / Autistic ‘delicate’ School for vulnerable or emotionally – Physically children There are many types of specialist schools. many are There specialist units attached to them: Some schools have Ultimately the decision should,Ultimately of course, family. and their person be up to the young However, of schools,provision different between greatly will vary to meet demand funding and a readiness education authorities. Where there is an emphasis on inclusion it may be considered best for the needs of the pupil to best for be considered is an emphasis on inclusion it may there Where classroom.be met in the mainstream specialist expertise this can appropriate up by backed When met. needs are educational and social solution if the pupil’s be a good Schools and parents may consider whether a young person severely affected by a brain tumour a brain by affected severely person a young consider whether may Schools parents and in a specialist school. be better placed would education, If struggling mainstream within despite to supportall efforts and include the pupil, to consider their best interest be deemed in it may specialist schooling. treatment the tumour or the by wrought the changes circumstances In some person. a different now are terms they that in educational can be so devastating into Reintegration be inappropriate. therefore school setting may their former

specialist “ Returning to School

7 relationship totheperson dying ortotheirsiblings. may needadditionalunderstanding close aswillthosewithaparticularly Those who recognise similarhealthproblems inthemselves ortheirfamily culture andhomecanbetraumatising. For refugees thelossoflanguage, of aloved onebutcanalsobeseparation through thebreak-up offamilies. Significantlossneednotonly bethrough thedeath andcomfort. support already experienced significantlossintheirlives tendtoneedgreater Those who have person isgreatly affected by theirown experiences. The way pupilsandstaff respond totheillnessanddeathofayoung gap between time. individualsatthisvery important customsandreligious practices canbeinvaluable inbridging the cultures, An awareness ofdifferent hopeanddignityare respected. independence, The community shouldtrytocreate school aclimatewhere thepupil’s videosorMSN. E-mails, texts, cards andletters, thatcontactismaintainedthrough brief visitswhere possible, permission, withthepupil’s orparental longer thenensure, abletoattendschool Ifthepupilisno in mainly for breaks lunch ortheirfavourite classes. The pupilmay timeorcome sick only part beabletoattendschool and maintained. may isinvolved alsofinditcomfortingthattheirsocialnetwork ofsupport The parents andsiblings nurture thechild’s socialandemotionalwellbeing. With careful can planningandcommunication theschool maintained. aregular routine andnormalitycanbe relationships, important Through these young person’s relationships outsidethefamily exist. The isafamiliar school placewhere mostofthe them toattendschool. they andtheirparents may wish Even thoughayoung person isdying, group over theimpendingdeathofapupil: The may teacher have toperform several roles thepeer when supporting life aspossible andtodiepeacefully. asmuch toenablethemenjoy palliative care istomake thepatientcomfortable, The focus mostimportant in patient changes from curative topalliative. Medicalcare ofthe diefrom thedisease. sadly, somewill, cord tumour, Despite mostyoung peoplebeingsuccessfully treated for abrain orspinal managing bad news Deal withtheirown grief andissuessurrounding death Answer questionsfrom pupils thepeersUnderstand andteachers andsupport who are grieving Accommodate theneedsandwishesofdying pupilandhisfamily

Managing Bad News

8 6 ”

Our school is huge and it was the first was and it is huge school Our I felt time

from staff and pupils staff from parents to understand and support to understand in line with the school. their children parents (As always, with the family.) this will need to be agreed sympathy in any form they find suitable. find they form in any words’sympathy ‘right no are There and is valid of sympathy gesture any using euphemisms such as ‘passed away’,using euphemisms such as to sleep’, ‘gone God’ by ‘taken to Heaven’ ‘gone or and admit to not being able to answer all questions and admit to not being able to answer should it be told? - It is quite important told at the same that all are ‘rumours’time so that among not circulating are stories and different the school community share information,share to pupils and to support each to say to plan what other. able to feel to speak to classes if they be asked should only Staff pupils’deal with and manage and questions reactions and offer advice and counselling (see below) and offer consent for all action or information passed around school should be passed around all action or information consent for sought sensitively. and support done in should be All preparation with their wishes and beliefs accordance information and support? Do all know who it is? Do all know how to how it is? Do all know who and support? Do all know information hold of them? get Consider the best way to send condolences from the school and letters from to send condolences way the best Consider Sending home to all parents a letter explaining the situation will enable a letter explaining Sending home to all parents Enable pupils to share their feelings.Enable pupils to share their them to express Encourage Use a normal voice and words such as ‘dead’, such as and words Use a normal voice ‘death’‘dying’. and Avoid Be prepared for questions, for Be prepared as possible and honestly directly as answer Small groups are usually better than assembly for breaking bad news breaking for better than assembly usually are Small groups Who should be told? What should be told? When, should be told? What should be told? Who and where how Make sure all staff tell the same story all staff sure Make Consider what teachers need to know and what pupils should know and what need to know teachers what Consider Allow staff the space and time to discuss among themselves how to how themselves the space and time to discuss among staff Allow Make contact with professionals who will be able to support who the school contact with professionals Make A named member of staff should keep in touch with the family. should keep A named member of staff Their Who will be the key member of staff responsible for co-ordinating for responsible member of staff will be the key Who we were ONE community. ONE were we

Communication Communication A school will need of their community with the death of a member dealing communication. a system of good to plan and set up “ Grief does not progress logically through stages but resembles an ever churning whirlpool of emotion.

Further points to consider “ It was so Is there a private space which can be used for important that groups or individuals to talk or to go to for time we were given on their own? both time and Is there a named member of staff to whom pupils space. It made it can talk? dignified when Acknowledge the powerful learning experience for it could so easily pupils and teachers. Allow time for talk and have been reflection. Be a good listener anything but.” Include issues in the curriculum if appropriate, particularly where pupils raise the topic. It may need revisiting again and again over time Returning to School Returning “I really miss Are there practical ways the pupils can engage in my friend. expressions of grief and sympathy i.e. attending ” funeral or memorial service, creating an area of remembrance, raising money for charity, etc.? Should anniversaries, birthdays, etc. be marked? Experience has shown that families really appreciate the fact that their relatives are not forgotten on these special occasions

After Sandra died, friends from school continued to visit the family now and then just as they used to do when Sandra was alive. Her group of best friends would pop in on birthdays or anniversaries, encouraged by the fact that Sandra’s Mum always gave them a warm welcome.They laughed and cried together about the things they all used to get up to, sharing memories.

Please see the list at the back of the booklet of recommended books and organisations able to support the school in the bereavement process.

Managing Bad News

0 7 ” ” If it is this tough for us what must If it is this tough for us what it be like for his family! it be like “

memorial garden are popular choices. are garden memorial included designing and making a stained have Others vane, or a weather glass window putting on a concert as a memorial, setting up a sports speech day, for prize or endeavour trophy to pass a collection or book of memories creating on to the family know that the sorrow is shared the sorrow that know they are in your thoughts, in your are they them a part conversation of your make Where can they go? they can Where Involve pupils in arranging for an appropriate memorial for their friend. for memorial an appropriate for pupils in arranging Involve A bench, or a a tree Don’t change the subject when someone mentions their loss or becomes emotional the subject when change Don’t Do not try to avoid those who grieve more than you. more grieve those who Do not try to avoid add to their pain will only Isolation Discourage punishing oneself with notions such as ‘I should have…..’ punishing oneself with notions such as Discourage I…..’ ‘if only or Be prepared to show your own grief. own your to show Be prepared comfort to and provides affected It will touch others Talking about the dead person helps the grieving. about the dead person Talking it a normal part of conversation. Make If Let your genuine care and concern show care genuine Let your Work out what to do if people feel upset. feel to do if people out what Work The only thing I felt able to do was make cups of tea and provide tissues. provide tea and cups of make do was able to I felt thing only The Strategies for grief support grief for Strategies Young people often turn to their peers for support which can leave adults feeling helpless and adults feeling support can leave for which to their peers people often turn Young older ones of death whereas concepts or vague rejected. strange adolescents can have Young of death. definite concept of the finality and inevitability a more have necessarily Neither are outlet of grief. emotional acceptance or a constructive accompanied by

Adolescents and grief Adolescents intense in adolescence, seem to become more Feelings difficult. them can be expressing yet about death than showing anger comfortable expressing be more may person young A grieving to be childish. perceive may sadness or hurt they which joking about to cope by Some try death, of coping. as a way act as if nothing has happened or some may be particularly may This and less expressive. controlled tend to be more who boys so for to openly likely more Girls are and cry, grief express and comfort they the sympathy to get likely more consequently and are need. life. in a teenager’s change at a time of great that this is happening Acknowledge “ Difficulties in the Classroom

1 ● ● ● What mightIsee? and concentration. Fatigue cancompromise otherareas asmemory oflearningsuch school. They may beunabletodohomework afterafullday at exhausted. which previously involved littleeffort may make apupilfeel mentally TasksMental orcognitive fatigue orover stimulation islessobvious. months oryears. Itcanlastfor afterradiotherapy. particularly tumours experience this, Pupilstreated for brain We are usedtothinkingoffatigue asphysical. affect everything they do. Pupils may suffer from mental/cognitive orphysical fatigue which can fatigue ● ● ● ● ● Poor concentration ordifficulty remembering Irritability Poor appetite Not interacting withpeers arriving latefor lessons Difficulty getting around ontimeand school andbehaviour speech or Apathetic ‘lazy’ Work may beslow orlacking or ‘confused’ The pupilmay complainusingwords as such ‘fuzzy’ present as irritability, headaches andtemperatures. headaches present asirritability, from anexcessiveApart desire tosleepitcanalso 6-8 weeks afterradiotherapy. oftendevelops between ‘Somnolence Syndrome’

Fatigue

2 7 ” Simon’s biggest When Holly is Holly When by overwhelmed tiredness she lies her desk until across she feels better. Sometimes she her coloured shows card. is a signal for the This teacher to arrange to take for a friend her to the medical she can where room to sleep. lie down is fatigue. problem It stops him doing things and being part of a group. “ ”

Ask how they feel – even then they may find it hard to articulate. find it hard may then they – even feel they Ask how worries and fears discussing benefit from may They Allow the pupil snacks or energy drinks in class if appetite is affected pupil snacks the drinks or energy Allow Use puzzles as a relaxing activity between work work activity between Use puzzles as a relaxing Provide a calm and restful environment like the library like environment and restful a calm Provide Reduce the time table or number of subjects studied or number the time table Reduce Modify time limits in tests and with coursework Provide a coloured card for the pupil to indicate when they need time they the pupil to indicate when for card a coloured Provide ‘switching off’ out of class or just out – physically Allow the pupil to leave class 5 minutes early in order to get around to get in order early class 5 minutes the pupil to leave Allow easily school more Reduce expectations of homework and class work – provide the pupil – provide and class work of homework expectations Reduce is late or homework a teacher when to show card with an information incomplete Arrange bursts of work with frequent rests rests with frequent of work bursts Arrange I hate not being able to do the things I used to! I used things do the to being able not I hate

Strategies “ Difficulties in the Classroom

3 the relevant people. role mayimportant betocommunicate his/her concernsto althoughtheteacher’s most these potentialdifficulties, inherworkIt willhelpateacher withapupiltobeaware of type andlocationofthe young person’s brain tumouritself. andthe the influenceofthetreatment onthebrain, tumour, history ofearlieremotionaldifficulties preceding thebrain dependingontheindividual’s temperament, enormously, thepatternwillvary When difficulties dooccur, difficulties. Not allyoung peoplewithbrain tumours willexhibit emotional in asensitive manner. isdealtwith realistic orotherwise, of theirown performance, Itiscrucial thattheissueofexpectations and painfulprocess. This may beaslow acceptance ofanew identitytakes place. inwhich gradual A grieving process thenoccurs, disheartening. fresheach realisation ofanewly acquired limitationextremely butothers willfind inadvertently protected by ofinsight, alack Somemay be athletic)may have deteriorated. academic, (e.g. confront thefact thattheirperformance onanumber oflevels Upon returning theyoung toschool person willneedto need careful handlingandnurturing by thosearound them. Others willemerge withafragile self-esteem which will intact. andwillsurvive withtheirself-confidence are very resilient, Someyoung people harder for themtofeel thatthey belong. returning thattheirunusual experience toschool may make it They may well have anxieties on within theirpeergroup. as ‘one ofthecrowd’ desperately tobeacceptedasnormal, person amI?How dootherpeopleseeme? They want of What sort All teenagers are preoccupied withidentityissues. to it. share thisbackground andwho may have difficulty inrelating from peers which setsthemapart who donot experience, through atraumatic andpotentially life-threatening They willhave come capabilities –they may alsofeel different. Not only mightthey lookdifferent andhave different are likelyparticular tofeel acutely sensitive. aboutwhich teenagers in with changes inphysical appearance, The pupilmay inadditionhave tocope personality are seen. Sometimessubtlechanges in pattern ofcognitive abilities. withadifferent there willbeachange inintellectualcapacity, Inmostcases with amajorreadjustment following treatment. Young peoplewho have hadabrain tumourare oftenfaced emotional aspects “ Compared tohispeersheissoyoung andvulnerable. “ “ herself. with frustrated even more then gets hard but She tries so for Bev. r more. I amany know who seem to eally sorry ” I feel I don’t ” ”

Emotional Aspects

4 7 ” ” My hair ‘unit’ My hair To be honest To om HDC cost she does not life any make easier for herself or for else. anyone all She whinges the time and her classmates just get fed up it. with fr a fortune. It is glued to my head and I can it and brush real it like wash hair. Nobody in college has my a clue that I am totally almost bald – and that I is the way it! like “ “ ” totally different from my friends’. my from different totally

My experiencesMy are

Did the young person have emotional difficulties prior to their illness? Long- prior emotional difficulties have person Did the young not be may that the problem suggest would standing emotional difficulties tumour. brain to the pupil’s related that directly factors be other may There to the individual or their family. relating relevant are Similarly, pre-existing illness. life-threatening a serious by be exacerbated may emotional difficulties describe to medical reports and liaison with the hospital may Access tumour itself and its treatment. to the brain related emotional difficulties management, implications for has This should be sought. advice and professional talking to a counsellor or someone benefit from people may Some young trust. they whom them writing by their worries to share prefer Some may down. concerns is important to the pupil about your as Speaking sensitively support. or to accept any is a problem to admit there be reluctant may they of self-harm, to be at risk If the pupil appears and possibly the parents will need to become involved. professionals Depressed mood,Depressed mood swings, withdrawal, or motivation lack of enjoyment tearfulness. activities) and favoured (particularly in previously Anxiety, agitation, peers, about things suchby as acceptability worries keeping and the future.up with school work to school are about returning Anxieties or truanting. escalate to school refusal common and may who people Young attitude, a perfectionist develop may about their work particularly worried are up in class. to keep it difficult can make which may Obsessional behaviour result. self-confidence, self-esteem / low Low enhanced sensitivity Emotional immaturity, and clinginess over-dependence Somatisation (i.e. complaints of headaches, pain). abdominal In a child with medical or physical any exclude a history of cancer it is important to firstly an ailment cause for in the poor concentration as might also manifest Emotional difficulties classroom, and poor motivation academic underperformance Frustration, anger, aggression, irritability themselves isolate socially may with an emotional difficulty person A young help appropriate to ask for also be reluctant and may their peers from I sometimes think we inhabit different worlds and however much I try I much however and worlds different inhabit we think I sometimes understand. never will to explain they Strategies causes of an all the potential underlying It is important to try to explore assessment. an accurate to gain in order exhibited emotional difficulty The be considered: should following

What might I see in the classroom? What include: may patterns of emotional difficulties Common “ Difficulties in the Classroom

5 develop for anumber ofreasons: They can Behavioural changes may present aproblem intheclassroom. of thepupil. torecogniseimportant thatsomebehaviour may bebeyond thecontrol Itisalso more subtlebehaviours aswithdrawal such anddependency. canincludedisruption andaggressionaswell asthe ‘behavioural problems’ Itshouldbestressed that followingschool treatment for abrain tumour. Teachers may noticechanges inapupil’s behaviour ontheirreturn to behaviour language impairment. and ofinsightorspeech lack rigidity, attention span, difficulties asshort such cognitive deficitsand/orcommunication Difficult behaviour may beduetospecific or inkeeping upwiththeirpeers. they are withtheiracademicwork struggling or for children tobecomeunmotivated when behaviour todeteriorate intheclassroom Itisnotuncommonfor academic difficulty. The behaviour may maskanunderlying underlying emotionaldifficulty. require professional andadvicefor seekingfurther support the Goodmanagement may andbeingmanaged incorrectly. as ‘difficult’ recognise thismay leadtothepupilbeinginappropriately mislabelled Afailure to irritability asaresponse tohaving difficulties coping. withdrawal or there may befrustration, For example, from theillness. The behaviour may maskanunderlying emotionaldifficulty resulting These may beexacerbated uponthepupil’s return toschool. There may have beenbehavioural difficulties prior totheillness. inflexibility. nodisinhibitionand result inchanged behaviour asaggression, such ofthebrain atumourlocated inthefrontal part may For example, brain tumourand/orassociatedmedicalandtreatment complications. They may berelated tothetypeandlocationofyoung person’s “ sorry forhim. because we feel with thingsjust let himgetaway rules!cannot We but rules are him, know itishard for former self.We compared with his ofability his lack frustrated about Peter isclearly ”

Behaviour

6 7 ” If I am busy she will findIf I am busy she will an excuse ” She much prefers the company of the company prefers She much to go to the office or the medical room. adults. “

I don’t I am. that I know but be a pain to mean What happens as a result of the behaviour? happens as a result What attention as a result more Does the pupil get to it? response and people’s of the behaviour Define the behaviour clearly (i.e. clearly Define the behaviour of description frequency, intensity and duration) What triggers the behaviour? Is it in a the behaviour? triggers What particular lesson, at a particular time, in the of particular pupils,company etc? School phobia Attention-seeking Obsessive behaviours Obsessive Inappropriate behaviour such as sexualised behaviour Inappropriate behaviour Impaired social skills,Impaired egocentricity Inflexibility, thinking, or concrete literal overly lack of insight Inappropriately dependent or overly compliant dependent or overly Inappropriately behaviour, reassurance-seeking Poor concentration and attention span, concentration Poor being distracted,easily and impulsive restlessness behaviour Angry outbursts, frustration, irritability, verbal aggression,and/or physical or oppositional behaviour challenging “ Strategies to is the key the behaviour Understanding successful management. this careful For necessary. is observation to identify the Try following, diary over perhaps using a behavioural of a week: the course What might I see in the classroom? What changes patterns of behaviour Common include: may Difficulties in the Classroom

7 Behavioural Serviceasanadditionalresource. Support may Someschools have accesstoa implement abehavioural programme. especially where cognitive difficulties may make itdifficult to advise, The Educational Psychologist may beableto management strategies. It may benecessarytoseekprofessional adviceonbehavioural These may include: behavioural management strategies canbeputinplace. basic Once there issome understanding of thenature oftheproblem, andincomparison totheirpeergroup. adolescent development, The willneedtoconsiderthepupil’s teacher behaviour inlightofnormal goigdfiuto nprpit eaiu,where appropriate Ignoring difficult orinappropriate behaviour, Model calmbehaviour difficultfind itparticularly toadjustchange especially for pupilswho may Try toprovide consistencyandroutine, Eliminating ormodifyingtriggers totheproblematic behaviour Giving praise andattentiontopositive andappropriate behaviours “ he isscared. and hell andback boy hasbeento alot.That such parents helped Simon andhis through with Talking things ”

Behaviour

8 7 Mark had a frontal brain a frontal had Mark in specifictumour resulting difficulties in temper control, and dis- emotional outbursts inhibited behaviour. Head His his respective asked Year of subject teachers to record specific incidents, noting to difficultiespotential triggers in class displayed that Mark of his and the frequency outbursts. that It emerged to become appeared Mark and frustrated particularly angry in his maths lesson, and his teacher noted that difficulties if he began to arise or his work to share asked was a question out loud to answer of his peers.in front Further with questioning individually revealed and his parents Mark subjects that that these were felt very he had previously competent in, but that he was findingnow difficult. more of the analysis A careful of Mark’s behavioural pattern difficulties led to a sensitive him about his discussion with expectations of himself in these subject areas. His to use teachers also agreed of monitoring ways alternative to as opposed his progress of in front responses verbal the class. School refusal or phobia School refusal it becomes a long before need to be caught quickly will This standing problem. is Speaking to the pupil and the family to become also have may essential but outside agencies involved. a for treatment following It is a common problem tumour. brain Individuality management that behavioural It is important to recognise not be appropriate may one pupil for work that may strategies another.for is required. Individual assessment It is not uncommon for behaviour to get worse before it gets before worse to get behaviour It is not uncommon for better. at a time behaviour on a single problematic to focus Try and patiently. consistently the same strategy and apply Any improvement, slight, no matter how should be noted and praised. Perseverance and patience Perseverance Finding the right balance the right Finding lenient tendency to be overly can be an understandable There tumour. with a brain person of a young or protective can This problems. behavioural maintain or exacerbate unwittingly It is in the person important the young in some instances to treat as their peers.same way However, be inappropriate well it may and is organic which behaviour for person to discipline a young control. their beyond Good communication young with the of the problem acknowledgement A sensitive place. take should ideally person will A discussion with parents difficulty. a school-related this is exclusively whether clarify is important members both to with other staff Communication to ensure and of the difficulty picture establish a thorough management. consistency in behavioural Important principles of good behavioural Important of good principles management Difficulties in the Classroom

9 These children are atrisk ofsocialisolationandbullying. They may have difficulties with: social functioning. pupilsmay have alower levelFollowing of treatment for abrain tumour, social needs Understanding jokes Interpreting thesubtletiesofnon-verbal communication Making new friends orkeeping oldones Behaving inasocially inappropriate manner Controlling impulsive behaviour andoutbursts Taking turnsorsharing Being abletolistenothers inasensitive manner etc.) toneofvoice, facial expressions, body language, (e.g. Reading socialcues

Social Needs

0 8 ” ” iends at school ” Sarah cannot Sarah His small group now read facial read now or tone expressions of voice. to be have You in what quite literal do and say. you are very patient and very are to how learnt have him with interact – and successfully them he makes laugh! of fr “ “ .

The LSA knows just how to control the agitation before it escalates. it before the agitation to control just how knows LSA The

upset or agitated “ Sally has visual and social problems following her treatment for a brain for her treatment following has visual and social problems Sally her inside stay to she is allowed tumour. problems any reduce To her. with stay to 2 of her friends times and for at break classroom On pleasant, to a particular to go bench in she is encouraged days sunny the playground. a chat with Sally, for there to go Pupils know duty staff of knocking into on her and she is in no danger an eye keep can easily people in the playground 9. confrontations Avoid 8. in the playground on interactions eye watchful a Keeping 7. policy anti-bullying A strong 6. (e.g. behaviour appropriate discussions around Classroom PSHE) 5. Social skills tuition, either individual or in groups 4. situation in a given is expected Giving the pupil a clear idea of what 3. Using simple, language concrete 2. the pupil is becoming in situations where to intervene quickly Moving Possible strategies Possible 1. system A buddy Difficulties in the Classroom

1 Psychological Physiological in anumber ofways. A brain tumourcanaffect sexual development sexuality as altered body weight andshape. skinconditionsaswell hairloss, stature, short Changes may include have aprofound effect. can brain tumourandsubsequenttreatment, duetoa Changes intheirphysical appearance, preoccupied withtheirlooksandselfimage. Adolescents are usually development. aspectofsexual animportant which issuch negative impactonselfesteemandconfidence problems insexual behaviour. effect ofabrain tumourwhich canleadto Impulsiveness may beaside- the young person. andthismay bevery upsettingfor permanent, of thecancertreatment asinfertility are such Somelongtermcomplications usually for life. treatment intheform oftabletsorinjections, The young person may receive hormonal doctor who specialisesinhormonalproblems. a This canbetreated by anendocrinologist, inhibition orheightenedsexual drive. sexual problems asprecocious such puberty, create ahormonal imbalanceleadingto This can treatment (radiotherapy orsurgery). location ofthebrain tumourortothe “ crude –asusual! despite theboys being she was really good - embarrassment but I would have diedof ofthings. all sorts Jones toldusabout In Biology Miss In Biology effects are dueeithertothe factors includethefrequently ” “ or offend others. or offend and doesnotembarrass discreet andmodest iskeptaffection display ofsuch Allwe askisthat other. foreach affection develop genuine They are likely to ”

Sexuality

2 8 can be affected by cognitive impairment such as cognitive by can be affected

skills difficulties can create problems in developing age appropriate age in developing problems create can skills difficulties

I know exactly where to kick someone who gets fresh with me! with fresh gets to kick who someone where exactly I know Enhance self esteem and focus on strengths on strengths Enhance self esteem and focus and skills Provide assertiveness and social skills training Provide Identify models of appropriate behaviour Identify models of appropriate Make all subject staff aware of individual concerns, aware subject staff all Make particularly PHSE, Citizenship and Biology teachers Offer supplementary sex education supplementary sex Offer Provide opportunities to develop structured group activities, group structured opportunities to develop Provide e.g. or discussion of pupils in drama grouping Teach or practise appropriate behaviour, appropriate or practise Teach play role through possibly “” sexual relationships. Young people with a brain tumour may appear relationships.sexual tumour may a brain people with Young immature, injury. brain of actual partly as a result also be other may There interpersonal reading impairment suchsubtle signs of social as difficulty inferences.cues and understanding on their a major effect can have This relationships.capacity to develop missed a also have may They less social have school therefore and amount of time from considerable to their peers. and confidence compared experience memory loss and difficulties in processing new information. new in processing memory loss and difficulties the Mastering difficulty. pose a real can therefore knowledge aspects of sexual factual The people might be further if they of these young compromised safety sexual persuaded, easily are send out or if they the skills to resist do not have and uninhibited behaviour. impulsive through messages inappropriate Maggie unexpectedly burst into tears Maggie unexpectedly a human during and left the classroom biology lesson.The theme of the lesson reproduction.had been human It that Maggie had been told that emerged not be she would of treatment as a result children. able to have Strategies to consider Strategies Sexual knowledge Sexual Social Difficulties in the Classroom

3 Changes insocialcommunication Changes inlanguage Changes inspeech What mightIseeintheclassroom social isolation. low morale and can prevent secondaryproblems asfrustration, such Early recognition and sympatheticattitudecanhelptoidentifyaproblem. Ateacher’s vigilance language difficulties which may fluctuateover time. After treatment for abrain tumoursomepupilsexperience and speech speech and sarcasm humour Problems ininterpreting abstract language asmetaphors, such Difficulty inholdingaconversation Difficulty intakingturnsandreading verbal andnonverbal cues take inmore complex communication bothspeedofprocessing andabilityto Difficulties withcomprehension, expressing thoughtsandideasinwords reduced fluencyandotherdifficulties in Trouble findingthe right word, Slow orhesitantspeech difficulties Articulation Poor voice qualityorintonation Slurred speech Increased ordecreased volume language &communication

Speech, Language & Communication

4 8 ” There is There ” David is just David You just have to just have You different – in speechdifferent – and and behaviour that’s that. does He up not get hung about it and nor at do his friends school. be patient. always a slight delay always Lucy starts to before a question – answer long a bit like distance calls in the And she speaks past! very slowly. “ “ Mark had a well developed vocabulary and developed had a well Mark skills regarding comprehension good factual information. However, following tumour his social for a brain treatment impaired.language skills were Pupils in his standing too class complained that he was loudly. and speaking too to them close did not seem to notice that this bothered He them. to be one desperately wanted Mark misjudged but his efforts of the crowd were more. his peers even alienated and only ‘weird’ complained that he had a They sense ‘geek’. him off as a and wrote of humour social isolation caused Mark’s increasing unhappiness. him considerable pupil an unobtrusive way to signal to the teacher that they have have to signal to the teacher that they way pupil an unobtrusive not understood. Provide the pupil with a framework to break down communication into communication down to break the pupil with a framework Provide chunks,manageable e.g. who, what, where, when, why Offer feedback on the information they have given you so far and so far you given have they on the information feedback Offer them to fill in the gaps. prompt gently Where word finding is a difficulty it is worth trying to introduce the it is worth trying to introduce finding is a difficulty word Where descriptions the pupil to complete or to give for sound of the word first the word. might trigger which stuck it is better to If a pupil is genuinely tell them the word. simply If comprehension is a particularIf comprehension difficulty, the be useful to give it may Some specific strategies can be put in place in the classroom: can be put in place in the Some specific strategies Strategies important people with are in dealing with young principles Some general difficulties.speechlanguage and and speak slowly must teachers The themselves.clearly into short and down should be broken Instructions understand. the pupil can easily which simple commands If the teacher his/her by or frustrated pupil is becoming flustered senses that the in communicating,difficulties a calm and reassuring should adopt they attitude, or start again. down that the pupil slow suggesting gently It is for the need respecting the pupil by off pressure important to take additional time to communicate. helpful. is extremely praise Frequent A speech and language therapist will be able to provide be able will therapist A speech language and guidance. specific more any for be made should A referral difficulties. speechsignificant language and Difficulties in the Classroom

5 What mightIsee? team toschools. Advice willbegiven by theophthalmic squints. Occasionally surgery canhelpcorrect fixed prisms orpatching). problems (glasses, may beabletohelpcorrect someofthe An ophthalmologist willassessthepupiland vision affected inanumber ofdifferent ways: A pupilwithabrain tumourmay have their vision Poor co-ordination (eyes may flicker andbe Odd headmovements oreye movements slow tofollow objects) together) Squints anddoublevision(eyes donot move eyes orjustone) canbeboth Visual fielddefect (“blindspots”, sighted) blindorpartially reduced, Decreased visual acuity (direct vision pupil cannotread instructions ifthe misunderstanding or ‘switching-off’ Difficulties gettingonwork, started overload noisy –thepupilmay suffer from sensory Confusion ifthegroup islarge ortheclass effective non-verbal cues and are therefore unabletosendout they cannotread gestures andsocialcues The pupilmay besocially isolatedbecause together. somewhere tosit they found menu andmadesure read outthatday’s In thecanteenthey reading. were they where inthebook and showed her recorded accurately that homework was checked her.They they mightbesthelp had briefed onhow whom herteacher friendssupportive several have to Nina was lucky “ her disorientated. tunnel vision makes position buther are intheright She canseeifthings you would think. are greater than Sally’s problems ”

Vision

6 8 ” At first we were all totally devastated.Then to adapt learn you and to compensate. now. is doing well He School is not so daunting. “ The most suitable colour of paper for printing is very individual, is very printing suitable colour of paper for most The but buff partially the sighted by often preferred are or light green Make sure worksheets are clear, are worksheets sure Make copies. good turning and page Avoid as opposed to a more vertical positioning and numbering ensure of information spread horizontal Provide the pupil with their own text book – sharing can be a problem book – sharing text with their own the pupil Provide Only use blue or black pen on the whiteboard Only Give verbal commentary on all classroom demonstrations and activities and demonstrations commentary on all classroom verbal Give Use ‘Low Vision Aid’ Vision print ‘Low enlarges enhances or which is a device which Use Provide notes in suitable font size if unable to see work on the board on the size if unable to see work notes in suitable font Provide Enlarge worksheets to desired size before lessons and provide personal lessons and provide size before to desired worksheets Enlarge work (OHP) Head Projector and Over copies of planned board Use font Ariel Black and assess the font size needed for all print size needed for Black and assess the font Ariel Use font Work in small,Work sympathetic groups Encourage teachers and pupils to address the pupil by name before the pupil by and pupils to address teachers Encourage expressions facial to read be unable asking a question – the pupil may and gestures Sit next to a helpful pupil (left side depending on dominant side right Sit next or of vision) Sit on the front left of the class if tunnel vision is directed towards the towards the class if tunnel vision is directed left of Sit on the front (and visa versa) right Sit at the front of the class. of the Sit at the front at sensitively, be arrived needs to This the pupil with his peers perhaps seating Peter’s small and neat handwriting was often praised by the by often praised small and neat handwritingPeter’s was teacher. However, for to use his essays wanted Peter when writing. his own to read his exams he struggled before revision laptop for class work he used it a new familiar with Once he was as homework.as well able to as he was better coped much He size. font to a readable the print enlarge Using print Position in class in Position Difficulties in the Classroom

7 “ Movement around school Other Laptop computer was used. work much more quickly thanwhen conventional white paper bold blacksquares meantthatNigelwas abletocompletehis Over coloured with teacherfoundthatbuff paper timeNigel’s We don’t. Practise moving from classtowithoutpupilspresent Encourage friends to protect thepupil from collision incorridors and There are use. somany gizmos andgadgetsyou CAN Use coloured rulers rather thanseethrough clearplastic Consider theuseofadictaphonefor notesinclass school. Team willhelpassesstheneedsofpupilsandpotentialhazards in (The Visually Impaired etc. Arrange for linestobepainted onsteps, playground Arrange for thepupiltoborrow thevideotowatch athome Watching canbetoodifficultTV /videoatschool inarestless group. Allow stickers andcolours inworkbooks asanaidtolocatingtopics Shapes onpapermay needtobeshadedin vision inarapidly moving crowd canbeproblematic Reduced pushing inthebusycorridors atchangeover between lessons. inorder toreduce withafriend, Allow thepupiltoleave theclassearly, clarity oflinesandbackground colour Ensure Use centimetre squared paperinsteadofnormalgraph paper. tremor ormotorskillproblems Use extra large diceandcubesinMaths–alsohelpfulfor pupilswitha removed!)a laptop(withthespellcheck Seek permissionwell inadvance oftestsandexams for thepupiltouse Arrange for typing thepupiltolearntouch revision notetakingand Encourage thepupiltousetheirlaptopfor enlarging, ”

Hearing

8 8 ” I sometimes tell my friends that I am friends my not stupid – only of hearing. hard “ Total communication Total Sign bilingualism Finger spelling Finger British Sign Language (BSL) Sign Language British Lip reading Lip reading Maternal reflective and auditory verbal theory and auditory verbal Maternal reflective Structured oral approach oral Structured Natural aural approach aural Natural Additional sign systems include:Additional Sign Supported English (SSE), Signed English (SE), Gorman Signed Speech (PGSS), Paget Cued speech, Signalong and Makaton. There are a number of other communication options available. of other communication a number are There A Hearing detailed advice on these: Specialist will give Impaired Direct audio input Direct aid or cochlear hearing as a teacher to connect the pupil’s you allows This or computer or to a to audio equipment such as a radio implant directly of other devices. number All hearing aids have a microphone which will receive sounds and then will receive which a microphone aids have All hearing amplify them. However, completely. hearing not restore aids do hearing All noise, noise, background including distracting is amplified so such as a environments in noisy still be compromised may communication classroom. Hearing aids Hearing Contact the Hearing Impaired Service in your Local Education in your Service Impaired the Hearing Contact specific help and information. for Authority

After treatment for a brain tumour, a brain for treatment After hearing people develop some young mild to severe. from can range which problems deafness can acquired This and will need both time and and socially both educationally be devastating to,patience to adapt the teacher. but also for the pupil not just for development, impact on language Deafness has a major at so the age is crucial. occurs the deafness which Speech patterns and sentence up, picked are structures almost automatically, listening to people from talking. sound in a or every spoken word not hear every may A deaf person word. this. reflect English may and written spoken Their instance it is For more as these are endings of words off deaf people to leave common for to discern,difficult ‘hat’‘hats’ than rather ‘walk’ or ‘walked’. than rather hearing Difficulties in the Classroom

9 “ ● A CSWassistsby translating Englishintosignlanguage. Communication worker support (CSW) Strategies for theclassroom: socially isolated. language Allow timefor demonstrations orexperiments tobeexplained insign nottheCSW Speak directly tothedeafchild, There willalways beabrief timelag to them. aquestionbeingsigned Allow sufficient timefor thedeafpupilto ‘read’ Ask the CSW to teach youAsk theCSWtoteach afew signs Provide transcripts ofvideomaterial usedintheclassroom Provide handouts–takingnoteswhilst lipreading isdifficult Keep unnecessarynoisetoaminimum Use visualaidsasoftenpossible communicated /written down inthepupil’s homework diary. Ensure homework andinformation activitiesare aboutschool hearing tofocus andensures only oneperson isspeakingatatime Insist thatpupilsputtheirhanduptospeak–itenablesthehard of Can they seewho isspeakingandwhat they are saying? Consider where thepupilshouldsitandwhom they shouldsitnext to. hearing pupils Introduce communication and signlanguage classes /sessionsfor by actingasarole modelfor hearing pupils Promote being ‘deaf aware’ Poor hearing means you cansoeasily become ” “ embarrassment. great dealof skill which saves a Awonderful reading. quite skilledatlip Paul hasbecome ” mobility& motor skills

Most young people with a brain tumour make good physical recovery after We could do with treatment for a brain tumour. However, some are left with impairments “having a new lift which can affect both fine and gross motor skills. The complex interaction installed. Apart from of mobility and stability may be affected by factors such as balance and coordination, muscle tone and strength, attention and concentration as well that there are hardly as mood and motivation. any problems with Gross motor skills involve the whole body in activities such as walking, movement around running and jumping and are needed for general mobility around the the school. school, in the playground and in P.E. / Games. The young person may appear ” awkward, clumsy, slow or weak. More severely affected pupils may have a At school I have a weakness down one side of the body, called hemiparesis or hemiplegia. “tray with special Where coordination and weakness affects all four limbs of the body, called equipment such as quadriplegia, the young person may need assistance, aids or a wheelchair to scissors and pens and move about. we have the same Jim is in a wheelchair and has very limited at home. movement and control of his hands. At the ” special school he attends, the home economics department is fully geared up for any problems which might occur. Anti-slip mats are placed

under bowls when stirring, utensils have Mobility and Motor Skills ergonomically correct grips and the tabletop, including the sink and cooker can be raised or lowered to suit the needs of individual pupils. The workshop technicians at the school pointed out that while most schools cannot go to such lengths to accommodate individual pupils, there is still a great deal that can be achieved through the acquisition of off-the-peg learning aids. Strategies to consider Use classrooms on the ground floor or which involve a limited number of stairs Limit or adapt expectations Get a friend or buddy to carry bags around school Allow the pupil to leave class five minutes early in order to negotiate the corridors without the rush and noise of crowds Have procedures in place for the safe evacuation of a pupil with mobility problems See separate section on P.E. and Outings 90 Some pupils may have to learn to use a different hand altogether!

Fine motor skills are the smaller hand movements which include the ability to use tools such as pencils and scissors. The ability to grasp, manipulate and release may be slow, weak or unsteady to the point where the pupil will need assistance in the classroom with certain activities. A young person with fine motor skill problems may find any of the following difficult: Writing and drawing “ Without imaginative Folding paper and using scissors technology Ian would not have been able to return Doing up buttons and shoe-laces to this school. Eating and drinking ” Carrying out science experiments Operating tools and machinery in Craft Design &Technology (CDT) Strategies to consider Use specific aids where possible such as pencil grips, adapted scissors and equipment Ensure a good sitting position. Consider table height, chair and how well the body is supported Use equipment of an appropriate size, with a non slip surface or convenient grips or handles, particularly in food technology, CDT and for Science experiments Use paper with larger lines or squares For writing, a sloping board may be useful

Ask for advice and specific strategies from the pupil’s physiotherapist, Difficulties in the Classroom occupational therapist or neurologist.

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Memory

2 9

The young person may confabulate (fill in gaps or make up information) if they cannot if they up information) or make (fill in gaps confabulate may person young The to sustain a conversation it difficult make and this may remember Attention lapses may be difficult to distinguish from a memory deficit and the two often co- a memory deficit and the two to distinguish from be difficult lapses may Attention exist. and vice versa memory problems by can be exacerbated concentration Poor Memory difficulties may fluctuate from day to day and can vary if the pupil is tired or unable to if the pupil is tired and can vary to day day fluctuate from may Memory difficulties concentrate Difficulty getting to the right lesson with the correct belongings at the right time at the right belongings lesson with the correct to the right getting Difficulty Difficulties following homework instructions which may lead to incomplete work may which instructions homework following Difficulties The pupil may ask for repetition of instructions or may say they do not understand they say or may of instructions repetition ask for pupil may The Difficulties retaining new information and learning new concepts and learning new information new retaining Difficulties Some young people may be unable to find their way around school or remember where their where school remember or around way be unable to find their people may Some young or desk is locker Inability to follow task instructions,Inability to follow increase particularly as length and complexity Difficulties recalling information, recalling Difficulties delay and / or after a time immediately memory Luke was treated for a brain tumour located in a part of the brain responsible for memory. responsible located in a part tumour of the brain for a brain treated was Luke In addition, to that part of the brain. of radiotherapy a high dose he had received found it He difficult both his teacher and his parents, to him by given instructions to follow and he was in the classroom.unable to complete work his teacher and assessment of his memory by Further material. to written as opposed information verbal to recall struggled that Luke LSA revealed find meant that he would difficultThis it particularly his teacher had said out what to remember loud in the classroom. out, to get his book asked was example if Luke For to a page and turn complete an exercise, lost. to do as he was to ask his neighbour what often have he would Luke the teacher had said, supplementing what instructions written with presented was in addition to him to tick-offa checklist he had completed.This sections of a task which that allowed allowed for him in the materials to help prepare asked and an LSA was independently to work Luke classroom. What might I see? might I What Young people with a brain tumour can often have memory difficulties. tumour can often have people with a brain research is substantial Young There upon memory. and radiotherapy tumours brain assessing When various of effect documenting the memory,a pupil’s visual and verbal both for to consider his/her memory it can be helpful information, and after a both immediately information to remember in addition to their ability delay. aspects of memory, with different or weakness to see strengths It is not uncommon and it is at home. information ability to remember person’s about the young also useful to enquire After treatment,radiotherapy to concentrate tumour can also find it difficult people with a brain young and sustain their attention. This, anxiety, with together memory. to the pupil’s can be detrimental required. is problem assessment of the underlying Careful It is important to note that some pupils insight into their memory difficulties, reduced also have may to learn their ability can affect which strategies.and use new lacks insight or person this if the young addressing be taken must Care denies such difficulties. Strategies Assess strengths and weaknesses in the pupil’s memory. Does the young person understand and remember information better when it is presented in a particular way (i.e. written / orally / pictorially)? Each pupil is unique. Reassure the young person. It can be frightening not to be able to remember things. Try to minimise distractions when the pupil is trying to remember information. Reduce memory demands in the classroom where possible. Provide opportunities for repetition and over-learning, using a multi- modal learning approach. Start with the pupil’s most intact modality. Provide memory tools i.e. supplementary written instructions, diaries, checklists, clocks, memo board, dictaphone, personal organiser, calculator, worksheets or templates. Find out what works best for the pupil. Check that the young person has understood and remembered task instructions. Get them to repeat information back to you. Use cues or triggers to help the pupil recall information, particularly if retrieval of learned information is a problem. Their memory system may be disorganised and they cannot locate the information they require. Some may be helped by multiple choice type questions as opposed to open-ended tasks. It may be easier for them to recognise the correct answer rather than recalling it freely, and this may reinforce successful searching, perhaps making it easier for them to find the answer themselves next time. Try to link new learning to the pupil’s previous knowledge and experience. Teach memory strategies i.e. mnemonics, mental imagery, mind maps. Difficulties in the Classroom ‘Mnemonic’ strategies may help the pupil to remember common groupings of words or letters (i.e. ‘Never Eat Shredded Wheat’ to remember compass points). However, some pupils will find learning the mnemonic sequence an additional burden, and it is unclear how helpful these strategies are for someone with a memory impairment. Check with the pupil how useful this is. Have a homework diary and check each day that this has been completed appropriately before the young person goes home. Use a buddy system to help the pupil find his / her way around school and get to classes with the right books, or use visual cues. Specialist professionals (i.e. an Educational Psychologist) will be able to assess the pupil’s memory further and provide advice on specific memory techniques.

Memory

4 9 ” Sarah’s friends are friends Sarah’s becoming better at becoming better ‘reading’ she is when to struggling something. remember help a lot,They but at school she seems lost them. without “ ”

Use write-on sheets for work to increase focus to increase work sheets for Use write-on Break down work and make it practical wherever possible wherever it practical and make work down Break Provide positive,Provide specific feedback Stick to routines as an aid to memory Stick to routines clear structure. examples. life real and through visually Reinforce Use scaffolding techniques for planning and organising work planning and organising techniques for Use scaffolding Give instructions in the right sequence and one step at a time, sequence in the right instructions Give ‘I NOT have 44 after you to tackle on page the questions you like would findings.’ your and noted down completed the experiment a give Do not the pupil with a provide you sure and make list of instructions complex checklist to follow. Use pictures or colour prompters to aid memory prompters or colour Use pictures Use spider diagrams to help organise thoughts to help organise Use spider diagrams Repeat information frequently information Repeat Encourage and teach effective note taking as an aid to poor memory and teach effective Encourage Break down text into small, text down Break steps structured Numeracy skills and concepts to be taught in small steps and with a skills and concepts to be taught Numeracy Cut! I’ve forgotten what I wanted to say! I’veCut! I wanted what forgotten Some young people with a brain tumour may have specific difficulties have tumour may people with a brain Some young of their day, the events recalling cannot talk about things that and they or distant past.seen in the recent done or have they might require They ‘selecting’help should be observing and they information which remembering. them and providing experiences the pupil’s By describing commentary,with a verbal ‘script’ a be able to remember may they and done. have they what describing information factual retrieve Noting down them to refer a timetable or diary will allow in experiences the pupil’s back, the pupil to locate help may of events reminders brief and having prompting. without precise unable to retrieve are that they memories

Further Strategies Further “ Difficulties in the Classroom

5 What mightIsee? have aprofound effect ontheirlearningandbehaviour. This can noisyclassroom environment. inabusy, particularly distracted, They may finditdifficult tosustainattentionandthey caneasily be following particularly radiotherapy treatment. concentration andattention, Young peoplewithabrain tumourcommonly have decreased and attention concentration causing thepupiltolose concentration. what exactly is process ofelimination, through a falls toelicit, totheteacher itoften observable behavioural problems, might identifyspecificcauses of a fullneuropsychological assessment Whilst combination ofallthesefactors. concentrating may becausedby a Problems them to off’. ‘switch language ormemoryproblems thatlead Some may have receptive distracted. they may beeasily Alternatively, problem sustainingtheirattention. they may have a frequently off-task, Ifapupilis different possiblecauses. in theclassroom may have anumber of What appears tobeabehavioural problem Work may beslow orlacking memory problems andviceversa concentration canbeexacerbated by Poor the two oftenco-exist. from amemorydeficitand distinguish Attention lapsesmay bedifficult to complexity increases when thepupilistired orwhen task worsen periods oftheday atcertain Attention andconcentration may increase aslengthandcomplexity particularly Unable tofollow taskinstructions, The pupilmay leave thedeskortalktohis/herneighbouring peers Being easily distracted by noiseorany otherstimuli intheclassroom Lapses ofconcentration period oftime afterjustashort Tuning-out orday-dreaming

Concentration and Attention

6 9 them Don’t expect the pupil to be able to the expect Don’t than one thing at a time. on more concentrate poor concentration with very someone Allow to take and not be expected to listen only notes at the same time. the pupil with Provide notes for staying on task staying for Frequently prompt the pupil to remain on-task to remain the pupil prompt Frequently prompts.using visual or verbal could be a This visual cue card, touching the pupil on the shoulder or using their name. Use instructions such as ‘listen’ and ‘concentrate’ as genuine reminders, commands not discipline attention span. about the pupil’s Be realistic 10- for be able to concentrate only may They at a time,15 minutes be may breaks regular and concentration. to optimise required Praise Work to the pupil’s interests and use stimulating materials to engage materials and use stimulating interests to the pupil’s Work them. for computer games pupils can play the most inattentive Even hours, and stimulating and auditorily visually are because they simply to succeed motivated are they Keep tasks brief and practical rather than purely verbal. than purely people rather and practical tasks brief Keep Young are they attention to tasks with which often find it easier to hold their to listen. have simply they than when rather not involved physically Try information! them with too much verbal to overwhelm Provide the child with a template to work to and an example of what an example to and the child with a template to work Provide the end-point should look like. providing useful for are Computers insert enable the pupil to into a pre- templates as they their work but adaptable format prepared Provide a visual flow chart a visual flow the steps required. of Provide child can tick The off each and if the child step as it is completed becomes distracted, they to had got they to find where back to the diagram can refer and the pupil is able to experience success as each small target is success as each target small able to experience and the pupil is reached. after small steps is helpful even Praise Break the task down into small focused steps. focused into small the task down Break be less daunting may This If the pupil has difficulty sustaining attention to a task: difficulty sustaining attention If the pupil has Difficulties in the Classroom

7 “ he will have anothercarboncopy classroom confrontation! As we talkheiscompliantandremorseful –thenshortly after If thepupiliseasily distracted: It is difficult toreason with himinameaningfulway.It isdifficult equipment onthedesk to only thatwhich is essential. Limittheamountof target pupiltogive instructions. himfurther address any problems withtherest oftheclassbefore returning tothe first stepshouldbebrief andeasily achieved to toenabletheteacher The commence thetaskandprompt themtodosoattheright time. Ensure thepupilhaseverything they needto instructions are given. before Askthemfor ‘pencils down’ pointoftasks. the starting Gain thepupil’s attentionbefore giving taskinstructions andsimplify allocated atimelaterthatday todoso. they notedown what itisthey wish totalkthrough andthey are Young peopleoftenfindthey canrelax more during lessonsif these. timeshouldbesetasidewithanadulttodiscuss intrusive thoughts, Ifthepupilispre-occupied withworries or distractions. Reduce ‘internal’ helpful toreduce copying from theboard. paired orsmallgroup working may facilitate attentionanditmay be Individual, Consider who they would bestbe placed next to. the class. rather thanfacing anotherpupilandfacing atthefront theteacher of sittingbeside they canwork inpairs, people who findthistooisolating, For young individual workstation sothathe/shecanavoid distractions. thepupilshouldsitatan for independentwork, Ideally, are minimised. and placethepupilatfront oftheclasssothatvisualdistractions rooms noisyteaching Avoid open-plan, distractions. Reduce ‘external’ ”

Concentration and Attention

8 9 ” ” For a while he only he a while For Whatever a pupil’s Whatever poor behaviour is due behaviour poor limits. are to - there came to school in the came to school in morning.In the he was afternoon or too tired either too up. wound “ “ ” ustrated.

We allow her a lot of time to express herself.of time to express her a lot allow We or ideas many If too

Ensure the child is seated at the front of the childfront is seated at the Ensure will be best able to hear the they the class where teacher Support spoken information with practical with practical information Support spoken to assist in language demonstrations or pictorial understanding Request a language assessment to determine the a language Request therapy and to see whether level language child’s might be warranted Provide a written list of instructions that the list of instructions a written Provide to pupil can refer Review what has been said, what Review to provide in order additional opportunities interpretation for pupil time to process the information pupil time to process Use brief, they at a level language concrete can understand Review what has been covered at the end of each and the lesson has been covered what Review of the next beginning Allow time for repetition to give additional opportunities learning for to give repetition for time Allow Model the activity with them to give them experience of the objectives them experience Model the activity with them to give Tell the pupil what to do or repeat instructions, to do or repeat the pupil what Tell back to work’ ‘get not reduce the demands on the child’s memory the demands on the child’s reduce Leave pauses between instructions to allow the to allow instructions pauses between Leave Provide as much information as possible in a visual or written form to form as possible in a visual or written as much information Provide issues build up in her mind she gets fr mind she gets up in her issues build Andrew found it difficultAndrew in class to concentrate treatment. his radiotherapy following His teacher often noted him day-dreaming, failed to and he frequently finish in class. his work to gain his attention and get him back on- In order task, used, was cue card a visual him, show the teacher would which his attention wandered.whenever that his Andrew important to It was class mates did not notice, that she simply and the teacher made sure discretely. him the card tapped him on the shoulder and showed If the pupil has problems remembering what they have to do: have they what remembering If the pupil has problems

If the pupil has trouble understanding the understanding trouble If the pupil has instructions: teacher’s “ Difficulties in the Classroom

9 meet expectations. itwas apparent attheendofyear that Fred was failing to for help, Despiteappearing well toparticipate inclassandnever asking character. which was outof questions before having areasonable attemptatthem, Fred hadalsoabandoned complex retain many basic numerical skills. andhehadseemingly failedto been inalmost imperceptible decline, noticedhowHis Mathsteacher hismentalmathsmarks over theyear had to produce littleinterms ofwritten material when tested. Hevivid hadbeenable andexpressive from asexpected ‘a boy like Fred’. reported thathiswritingEnglish teacher was stillquiteslow andnotas His Fred which surprisingly revealed underlying difficulties. somespecific apicture topiecetogether of began teachers analysing theSATS results, had notdonenearly aswell ashadbeenpredicted inyear 7.When He Fred’s SATS results attheendofyear 9surprised everyone atschool. usual self. Intimehewould nodoubtbeentirely tohis back even atschool. back seemed torejoice inthefactthathewas doingquitewell andthathewas Everyone atschoolandhome considering allhehadbeenthrough. attheendofyear Hisexams were reasonable, before hisillness. butgradually heseemedtogatherstrength andcarried onmuch as tired, During thespring term hesometimesleftschoolearly becausehewas term ofyear 8. hehadmissedallofthefirst treat arare brain tumour, When Fred returned toschoolafterhisoperation andradiotherapy to difficulties intheclassroom isaninvaluable source ofinformation. ateacher’s perceptive monitoring ofapupil’s However, assessment. The Educational Psychologist may alsohave arole in difficulties. providing adetaileddescription ofcognitive at theirtreatment centre, Somepupilsmay have hadaneuropsychological assessment important. continuous assessmentis Because ofthischanging picture over time, treatment. and organisational skillsmightalsobecompromised following Previously learntknowledge out asustainedactivitymay beimpaired. andto carry tofollow instructions, ability toaccessnew information, The pupil’s informationdemand quick processing andmemoryskills. withmathsandforeign inparticular struggle languages bothofwhich Pupilsmay are oftenaffected inyoung peoplewithabrain tumour. memoryandattentionspan nonverbal skills, Information processing, irradiation thedeclineinIQmay beprogressive year onyear. Ifthere hasbeenbrain do thecognitive difficulties becomeclear. andonly gradually They canappeartobecoping, as anoverall IQscore. A pupil’s performance may notbesignificantly different when measured orsubtleandhard todetect. a brain tumourcanbevery obvious, The cognitive changes thathave occurred inayoung person treated for cognitive difficulties

Cognitive Difficulties

0 1 ”

We want our pupils to be independent want We A seemingly ‘lazy’ A seemingly attitude and/or inattentive Frustration with the learning process Frustration Academic performance poorer than expected poorer performance Academic Working at a slow pace at a slow Working Social skills and maturity Planning and organisation skills Planning and organisation Memory and information retrieval Memory and information Concentration and impulsiveness Concentration Attention span Attention Using computers or calculators Using computers Understanding symbols,Understanding columns and graphs Sequencing Remembering facts Remembering Understanding concepts Understanding Auditory or visual language processing – processing or visual language Auditory and syntax with vocabulary trouble Reading and reading comprehension and reading Reading Spelling and handwriting learners.We that about through bring support,imaginative technology and adapted equipment – and respect!

What might I see in the classroom? What the following of in one or more Problems areas: “ Difficulties in the Classroom

1 “ concentration andmemoryproblems. questionscanbemoreMultiple choice helpfulfor pupilswithretrieval, written thelearningofallpupils. andverbal cuescansupport visual, Strong store andretrieve information. Cues willhelpapupiltoprocess, Comprehension cueing overwhelmed by complex tasksmightwell respond tothisapproach. The impulsive andimpatientpupilorthose these skillsinturn. Break down tasksintotheircomponentskillsandwork onmasteryof Pace andsize oftasks andtosettheirown goals. themselves, beingencouraged toaskquestionsofteachers andof participation, Pupils demonstrate theirlevel ofunderstanding through active Active learning Somerequire assistant. the1:1inputofateaching reports. psychologists’ someofwhich may berecommended in general strategies described below, There are anumber of young person experiences successintheprocess. closely dependentonhow relevant thelearningisandtowhat extent the Teachers know only toowell thatcognitive anddevelopmental progress is How canIoptimisethelearning? cognitive ones! cognitive that we were quiteblindtothemore invisible Use signals, such as gesture and voice, to alert thepupilto key toalert elements asgesture such and voice, Use signals, and issues verbal toverbal from concrete toabstract andfrom non- Move from general tospecific, Use concrete language Limit theamountofverbal information given atany one time request clarification Encourage pupilstorephrase information intheirown words andto processes andoutcomes Model tasks, the information given Take timetoensure thatthepupilhasunderstood theinstructions and information Teach pupils toidentifykey pointsbefore andafterreceiving There were atfirst somany obvious difficulties ”

Cognitive Difficulties

0 1 Encourage the use of study skills such as highlighting, the use of study Encourage as well use of stickers colour coding and the and paraphrasing as summarising Encourage the pupil to express thoughts in one sentence at a time the pupil to express Encourage Focus on one piece of information at a time on one piece of information Focus Use diagrams, ideas or represent information to illustrate and pictures graphs can be set to remind the wearer of what, the wearer can be set to remind when, where, or how who Help the pupil to make plans and sequence tasks Help the pupil to make Use organisational aids,Use organisational e.g. checklists, templates,‘watch+’ a diary or modified timetable or a which Sequencing skills to understand, find it difficult may If a pupil has sequencing deficits they a or describe recognise sequence of events. to find it hard may and they out of order be related may details of the event The directions, complex follow plots or activities. Pupils may have difficulty organising themselves and their belongings. themselves organising difficulty have Pupils may to organise Some find it hard communication. and written their thoughts in both oral Organisational skills Organisational Pupils can become more independent learners and more aware of their strengths and difficulties of their strengths aware and more learners independent Pupils can become more the use of self-monitoring.through can be coached, processes Thinking ask pupils to with cues to get questions to guide them in their work.relevant decisions informed the pupil to make enable may This learning. of their own control and assume more Self-monitoring Computers can help with attention,Computers as processing, as well time and visual perception reaction solving. and problem reasoning pupils and pace suit many style and flexible independent work The systems. contain in-built reward some programmes Technology Technology Difficulties in the Classroom

3 “ example. for equipment for ascienceexperiment, strategy couldbeappliedtosettingup This previous stepshouldbeintroduced. the timethey Each masterastep, learning. encouraging themtocontinue increasing their andare successful100%ofthetime, part This withtheeasiest oftenmeansthey start themthelaststepof skillfirst.and teaches approaches thingsfrom theoppositedirection ‘Backward chaining’ them from thebeginning. the individualwhole process andthenteach tendency when anew teaching skillistoshow The canbedemandinganddemoralizing. tasks, motor particularly learningnew tasks, disability, For pupilswithagreater degree oflearning Backward chaining a reminder for practical tasks. canbeusedfor academicworkcharts aswell as The isaccomplished. off aseach can thentick structure tothework they are doingwhich they Written orpictorial offer flow thepupila charts Flow charts dif them off as each stepiscompleted them off aseach oneitematatimeandtocrosstackle to Help thepupiltostructure checklists, activity sequence ofevents before orafteran Enable thepupiltoverbally rehearse the any onestep Offer anoverall outlinebefore focusing on Use cuestoaidstepsandsequence Rehearse sequences Limit thenumber ofsteps In such anacademicfamilyIn such hercognitive ficulties seemeven moreficulties startling. ” “ “ “ eroded. constantly being when thepresent is performance. academic clear declinein very gradual but plan forthefutur over. we have control And itisonearea everything! We have seen a It issohard to Organisation is ” ” ” e

Cognitive Difficulties

0 1 ”

The usual meaning of the three R’s the three of meaning usual appliesto all pupils. The For Adapting timetables Adapting difficulties, memory or organizational have some pupils who For helpful to adapt their it can be such as the specific location of lessons, timetable to include information individual daily the (i.e.particular equipment required books, each of them for expected lab coat) and the homework particular lesson.‘topic’ also be further individual timetable could modified to include the A pupil’s for each lesson. Presenting pupils with model answers for open-ended pieces of work provides them with a framework provides open-ended pieces of work for pupils with model answers Presenting work. their own to structure which around them the task seem less daunting and prevents It makes and becoming frustrated. direction the wrong in completely proceeding For example,For if applied to mental arithmetic, that the pupil does not have the teacher needs to ensure part out of the answer. of the working to guess any if to proceed how should ask to be shown They the answer. not know do they 3x9?’,‘What’s to be asked If the pupil were need to the teacher would the answer. know ask the pupil if they do not, If they tables of their times a copy should be given they to look up the answer. to associate the answer, learn By doing so they ‘27’ with the question, ‘3x9?’. to guess and say,If the pupil were ‘30’, that answer. reinforcing be erroneously would they As the the learned information, competent in retrieving pupil becomes more cues’‘vanishing a system of will them to flounder. without leaving support receive the external they help to reduce ‘Errorless learning’‘Errorless them making a prevents which a procedure pupil to learn through the allows mistake, response. the correct and guides them towards Errorless learning Errorless Precision-teaching refers to a method that teaches pupils information or skills only at the rate at at the rate or skills only to a method that teaches pupils information refers Precision-teaching able to learn them. are they which of their progress. enables clear tracking This example, For if a pupil consistently, words key three recognize only tumour can after a brain sight vocabulary with impaired 33.3%. by their repertoire increase would word teaching them one more to be taught should word The the teaching session. taught during words target the four be decided upon and only the new Once is mastered,word words, the original and the pupil also retains should be introduced. a fifth word and to be learned is made explicit information unless the exact do not learn Some individuals simply until it has become consolidated. taught repetitively Precision teaching Precision Science and essay templates Science and essay (such as in a science experiment), structure a repetitive tend to follow pieces of work Where providing templates (e.g. each time enables the pupil to insert on a computer) into a similar format their work it is required. questions and sample answers prompt also provide template can The Writing frames and mind maps frames Writing ideas (e.g. and sequence to generate people find it hard young Where story), a creative writing when ‘mind-maps’. to teachit can be helpful them to use brainstorming for a framework provide These about them enables pupils to write that a systematic way them in ideas but then organizing coherently. about to aid write to want they of what reminder them with a written It also provides memory.

pupils treated for a brain tumour there are the additional 3 R’s. the additional are there tumour a brain for pupils treated Routine, are They Rest. and Repetition “ Difficulties in the Classroom

5 after treatment for abrain tumour. for important ayoungAll willbeparticularly person returning toschool Consistency Rest, Repetition, Routine, Sensitivity, Patience, Realistic expectations considerably adjustedfollowing theirreturn toschool. Expectationsregardingteacher! apupil’s workload may needtobe Be clearandrealistic aboutexpectations –for thesake ofbothpupiland Photos this page: “Over the Wall Gang Camp” www.otw.org.uk

106 andcontacts references

MEDICAL TERMS AUDIOLOGIST A specialist in diagnosing and treating hearing defects ASTROCYTE A type of cell in the central nervous system BENIGN Non cancerous BIOPSY Removal of a small piece of tissue for examination in order to establish a diagnosis BLOOD COUNT The number of cells of different types contained in a sample of blood BRAIN STEM Connects the brain to the spinal cord. Is involved in bodily functions such as breathing, blood pressure and heart rate CAT or CT SCAN X-ray procedure in which a computer is used to produce a three- dimentional image. Used for diagnosis and for monitoring the effects of treatment CENTRAL LINE (HICKMAN LINE or PORT-O-CATH) A long plastic tube that is inserted, under anaesthetic, into a large vein near the heart. Central lines are used to take blood samples and give blood and medicines CENTRAL NERVOUS SYSTEM Consists of the brain and spinal cord Contacts & References Contacts

107 “ I noticed that Bev now uses very specific medical vocabulary with natural ease.”

CEREBRUM INTRACRANIAL PRESSURE The largest part of the brain. Consists of two Increased pressure in the head cerebral hemispheres (see below) INTRAVENOUS CEREBRAL HEMISPHERES Directly into a vein, such as drugs given through Consists of a right hemisphere, which controls a drip the muscles on the left side of the body, and a LOW GRADE left hemisphere which controls the right side of Classified as a benign tumour. However, low the body and is also involved in emotion and grade tumours can be locally aggressive and life language. Together the hemispheres form the threatening cerebrum. MALIGNANT CEREBELLUM Cancerous Coordinates muscle movements for balance and complex actions METASTASES Cancer which has spread from the place where it CEREBROSPINAL FLUID (CSF) started The fluid produced within the brain that circulates around the brain and spinal cord MRI SCAN Magnetic Resonance Imaging CHEMOTHERAPY Magnetic waves rather than radiation used to Treatment using one or more cancer drugs produce a picture for diagnosis or for monitoring ENDOCRINOLOGIST treatment A medical specialist who treats hormonal and NEUROSURGICAL growth problems Specialising in operations on the brain HIGH GRADE NEUTROPENIC Medical Terms Malignant Having less than the normal number of white HYDROCEPHALUS blood cells which would help fight infection An increased accumulation of cerebrospinal fluid ONCOLOGY in and around the brain. It can be caused by a The study and treatment of cancer brain tumour and is relieved by a simple surgical procedure called a shunt

108 ONCOLOGIST SEIZURE A doctor who specialises in the A sudden and intense fit with treatment of cancer convulsions where the person may PAEDIATRICIAN fall, breathe heavily and become A doctor who specialises in the care incontinent. (tonic-clonic seizure or and treatment of sick children and ‘generalized’) OR young people An interruption of consciousness PALLIATIVE where the person becomes Relieving symptoms and easing unresponsive and appears ‘blank’ or suffering when option of curative ‘staring’ (absence seizure or ‘partial’) treatment does not exist. SHUNT PRIMARY A long thin tube threaded under the Original site of cancer skin, usually from the brain to the abdomen, in order for excess fluid PROGNOSIS to drain away The outlook or expected outcome of a disease and its treatment TUMOUR An abnormal lump of tissue which RADIOTHERAPY is formed by a collection of cells. It The use of radiation to treat the may be benign or malignant cancer ULTRASOUND SCAN RELAPSE Ultrasound waves used to produce The return of symptoms of a a picture for diagnosis or for disease after a period of good monitoring treatment health; re-occurrence of a tumour after treatment REMISSION A period of good health when there is no longer any visible sign of cancer Contacts & References Contacts

109 useful contacts

Many of these websites have useful Macmillan Cancer Support and informative links. Website: www.macmillan.org.uk

The Royal Marsden Hospital Brain and Spine Foundation NHS Foundation Trust Website: www.brainandspine.org.uk Paediatric Oncology Unit Interactive site for children: Downs Road www.headstrongkids.org.uk Sutton, Surrey SM2 5PT Website: www.royalmarsden.org The International Brain Tumour Alliance - IBTA Website: www.theibta.org Cerebra Second Floor Offices The adventures of Captain Chemo The Lyric Building, King Street And Chemo Command Carmarthen, SA31 1BD, Wales UK By Benjamin de Garis Tel: +44 (0) 1267 244200 Website: www.royalmarsden.org/captchemo/ Website: www.cerebra.org.uk An interactive and educatonal computer game designed to inform patients, family and friends Children’s Cancer and about treatment with chemotherapy Leukaemia Group (CCLG) Website: www.cclg.org.uk

Cancer Research UK Website: www.cancerresearchuk.org

Cancer Backup Website: www.cancerbackup.org.uk

CLIC Sargent Cancer Care for Children Website: www.clicsargent.org.uk

Teenage Cancer Trust Operates a schools programme to improve awareness of cancer Website: www.teenagecancertrust.org

Brain Tumour UK Website: www.braintumouruk.org.uk Useful Contacts

Samantha Dickson Brain Tumour Trust Website: www.sdrt.co.uk

110 &measles chicken pox letter

This is an example of a letter to send to all parents in the school:

Dear Parents

MEASLES, CHICKEN POX AND SHINGLES

We are asking for your cooperation in a vitally important matter. One of our pupils is receiving medical treatment for cancer. This puts the pupil at serious risk if exposed to measles, chicken pox or shingles. The best way to protect our pupil from measles is for all pupils to be immunised against measles. Please discuss measles immunisation with your GP if your child has not already been vaccinated. If you suspect your child is having measles you should let the school know immediately. Our pupil is also at risk from chicken pox and would need to be given an injection within 3 days of contact. Please let us know immediately if you suspect that your child is having chicken pox. It is also very important that you let us know if there are shingles in your household. Your child is not at any risk whatsoever from this situation. However, the health and wellbeing of our pupil may be at serious risk. We depend on the co-operation of all parents and hope we can rely on your help. Many thanks. Yours sincerely,

Head Teacher Contacts & References Contacts

111

Letter/Recommended Reading

1 1 ” accept that his brother Winston’s Wish Winston’s

If I Should Die. Co. UK www.ifishoulddie.co.uk Cruse Bereavement Care Bereavement Cruse www.winstonswish.org.uk

The parents,The our attended have and siblings grandparents The Child Bereavement Trust Child Bereavement The www.childbereavement.org.uk teenager who has had to cope with her confusing emotions after who teenager one dies. a loved Guidance and explanations are offered. are Guidance and explanations – ISBN 0-684-86804-0 Helen Fitzgerald Al Desetta, ISBN 1-57542-079-1 Wolin Sybil E.A. ISBN 0-8070-2501-1 Grollman J. Canfield, M.V. Hansen, ISBN 009 1826403 K.Kirberger Yourself About Good Setting Goals & Feeling & E. - ISBN 1-57542-047-3 P.Espeland Verdick & Self-Esteem - ISBN0-915793-33-4 they made the best of it. they - ISBN 014 036 3815 Hill David death. his mother’s after his grief able to express and quarrels. times enables her hard on all the and focuses to her Dad eventually Talking to think about her future. S. Chick – ISBN 070 434 9477 is terminally ill.is terminally of grief. his feelings helps him to express friend A new Gleitzman - ISBN-0141-303-00X Morris memorial assembly and a tree planting ceremony.They planting a tree and are assembly memorial concert. charity in planning the involved also much It is good severed not just been ties have us that the for all of

www.crusebereavementcare.org.uk “ Books and information available from: available Books and information 1. The Be Struggle To Times Strong About Tough Stories – True Overcoming Teens by Love 2.You with Losing Someone to Cope – How Teenagers About Death for Talk Straight 3. of life, Soul – Stories Teenage the Soup for and learning Chicken love 4. on Solving Problems, People Young for Readings – Daily Count Day Making Every 5.Awareness, on Self People Creativity Young for Readings – Daily Today Making the Most of 6. to hard it finds old Colin year Twelve with the Queen – Weeks Two Recommended Reading for Secondary Schools Secondary - for Reading Recommended bad news Managing 11. A Teenage Guide to Coping with Bereavement – Practical advice and guidance from a advice and guidance from – Practical with Bereavement 11. Guide to Coping Teenage A 7. and how he spends with his best friend the final year Simon – Nathan recounts Ya See 8. clams up but is finally old Simon initially year - Fifteen Treatment Charlie Barber The 9. death to cope after her mother’s finds it difficult Her – Frankie Her I Loved Told I Never situations. of grieving in a wide range and about teenagers for Written - 10.Teen Grieving The notes Contacts & References Contacts

113 andauthors acknowledgements

The Royal Marsden Hospital Foundation Trust Paediatric Oncology Unit Downs Road Sutton Surrey SM2 5PT