Cerebral Palsy

Cerebral palsy is the generic name for a group of disorders affecting muscles and movement. If, for any reason, the movement part of the brain is injured or fails to develop normally, the child may be born with or develop cerebral palsy. Approximately two people in every 1,000 have cerebral palsy. It neither worsens nor ameliorates, but stays at the same level throughout life. However, children can be taught strategies to deal with it and to develop as much independence as possible.

In cerebral palsy, messages between the brain and the muscles are jumbled. There are three types of cerebral palsy, defined by which messages are affected. Many people with cerebral palsy have a combination of these three different types:

• Spastic cerebral palsy - results in stiffening of the muscles and difficulty with joint movements. Even the simplest activities may be very difficult to do. If one side of the body is affected this is called hemiplegia. If the legs are the most affected it is called diplegia and if both arms and legs are affected it is called quadriplegia.

• Athetoid cerebral palsy - results in involuntary movements as muscles tense and relax. Often there is difficulty controlling movements for breathing and speech. Hearing may also be affected.

• Ataxic cerebral palsy - results in the whole body being affected. The individual will probably be able to walk, but their balance and coordination will be affected. They will have jerky hand movements and speech.

An important fact to remember is that no two individuals with cerebral palsy are the same. Some are affected so mildly it's hardly noticeable at first, while in others the effects are immediately obvious.

Cystic Fibrosis

Cystic fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus. This also affects the child's digestion. It is the UK's most common life-threatening childhood disease. Until the 1930s, babies born with cystic fibrosis rarely lived to be more than a few months old. Now, average life-expectancy is about 31 years and rising. Most children with cystic fibrosis can expect to reach adulthood and enjoy active and fulfilling lives. Pupils with cystic fibrosis are academically as able as their peers, but hospitalisations and chest infections can result in frequent or prolonged absences from school.

Children with cystic fibrosis may be small and underweight for their age. A daily routine of physiotherapy and exercise is essential for every sufferer, to prevent irreparable lung damage. This can be very time-consuming and frustrating. Some pupils will also be embarrassed by having such arrangements made for them. Most of those with cystic fibrosis will need to take medication (enzymes in the form of pills or powders) at meal times.

Some cystic fibrosis sufferers may also develop diabetes, for which it may be necessary to take insulin and moderate their diet. These pupils may need to use the toilet more often.

Spina Bifida

Spina bifida is one of the most common congenital disabilities, affecting approximately one in 500 births. Improved treatment since the 1980s has meant that more children with spina bifida are surviving. These children are often of average intelligence and need to be able to attend a mainstream school.

Spina bifida is an abnormality of the spinal cord where one or two of the vertebrae do not form properly, thus causing a split, which in turn causes damage to the central nervous system. Most children with spina bifida will need to be in a wheelchair and may need a specially adapted toilet seat or other adaptations.

About eight per cent of babies born with spina bifida also have hydrocephalus (an accumulation of cerebro-spinal fluid). As with other complex conditions, there are various degrees of severity and there are several different types. Spina bifida occulta is a very mild form.

Cerebral Palsy

Children with cerebral palsy may have:

• very rigid limbs and limited or exaggerated movements

• difficulty in walking and moving

• either muscle weakness, stiffness, floppiness or spasms

• involuntary movements as muscles tense and relax

• difficulty talking or jerky speech

• hearing difficulties

• chewing and/or swallowing difficulties

• epilepsy

• a need for help with self-care skills

• difficulty distinguishing shapes (a problem with visual perception rather than eyesight) and may also have a squint

• learning difficulties, sometimes related to a specific activity such as reading, drawing or maths

• difficulties maintaining friendships if they cannot join in with other children's interests

• poor self-esteem.

Cystic Fibrosis

The most noticeable feature of cystic fibrosis is a persistent cough. Although not infectious, it may be embarrassing in front of other people, especially as a severe coughing attack occasionally leads to coughing up mucus or vomiting.

A child with cystic fibrosis may also suffer from:

• repeated chest infections and low resistance to all infections

• tendency to prolonged diarrhoea

• poor weight gain

• particularly salty sweat

• digestive problems

• lack or loss of energy

• frequent absences from school (sometimes prolonged).

Spina Bifida

A child with spina bifida may have:

• some incontinence problems in the early years, though these are usually under control by the age of seven

• weakness or paralysis in the lower limbs and need regular physiotherapy

• a lack of skin sensation in some parts of the body as a result of nerve damage

• difficulty sitting still and often appear fidgety and restless.

• A child with spina bifida who also has hydrocephalus may have:

• poor verbal comprehension

• difficulty understanding some non-verbal cues, such as gestures or tone of voice

• long-term visual and auditory memory difficulties

• problems with eye-hand coordination and motor planning

• great difficulty organising himself and his belongings

• some specific learning difficulties

• difficulty sustaining attention to a task.

Cerebral Palsy

You may need to:

• organise physical access to different parts of the school

• liaise on a regular basis with the relevant professionals

• ensure that appropriate adult support is provided

• make use of ICT as an aid to learning

• make use of audio-visual aids

• ensure that extra time is given for specific tasks

• adapt physical activities, especially PE

• use circle time to discuss inclusion issues for all the children in the class

• celebrate ability, not disability - some children may be very able in a specific area.

Cystic Fibrosis

You may need to:

• make provision for daily physiotherapy in a quiet room with a dedicated teaching assistant who has been appropriately trained. Nebuliser treatment may also be necessary. The number of physiotherapy sessions that take place each day varies according to the child's current state of health. The length of each session will vary from 15 minutes to an hour

• ensure that special supplements are taken with all meals and snacks. These come in capsule form and need to be taken in large quantities

• provide work for the child to do at home or liaise with the hospital or home tuition service during prolonged absences

• encourage independence in taking responsibility for her own treatment (such as the taking of enzymes with food and pacing herself during PE)

• encourage physical exercise, although the illness can result in energy loss and this must be taken into account during PE and other physical activities.

Spina Bifida

You may need to:

• have regular meetings with parents/carers and professionals as the pupil's needs may change over time

• organise physical access to different parts of the school - particularly toilet and washing facilities

• encourage the pupil to take an active part in playground games as there are many games that do not require a high level of running and jumping

• ensure that appropriately trained adult support is provided

• make use of ICT as an aid to learning and encourage the development of word processing skills

• make use of audio-visual aids

• ensure that extra time is given for specific tasks

• celebrate ability, not disability as some spina bifida sufferers may be very able in a specific area

• provide clearly structured classroom routines to help the pupil with developing his own organisational skills

• use pictorial or colour-coded task lists to support independent planning and organisation of tasks

• break instructions into chunks and check for understanding by asking the learner to repeat each part

• give opportunities for revision of key concepts and vocabulary

• reinforce new concepts through practical activities related to the pupil's own experiences

• use circle time to encourage social interaction and communication skills

• use specific games and activities to develop social communication skills.

Alliance for Inclusive Education: www.allfie.org.uk  

• KIDS: www.kids.org.uk

• Cystic Fibrosis Foundation (USA): www.cff.org  

• Cystic Fibrosis Trust: www.cftrust.org.uk

Association for Spina Bifida and Hydrocephalus (ASBAH): www.asbah.org  

Scottish Spina Bifida Association: www.ssba.org.uk  

Spina Bifida Association of America: www.spinabifidaassociation.org