7. support services and forming partnership with families
Name and description of Cerebral Palsy
Cerebral palsy (CP), is a permanent physical condition that affects a person’s movement. CP can be as mild as just a weakness in one hand ranging to almost complete lack of movement. CP is a condition that affects over 15 million people worldwide. Of those 15 million, twenty thousand of them are Australian. It is estimated that a baby is born with CP every 18hours in Australia. There are over 20,000 Australians affected with the heartbreaking condition, and it is estimated every year another 600 infants will be born with cp. Diagnosis is normally when children fail to reach their movement milestones. Babies are most at risk of cp when they are born prematurely, with complications during labor and delivery or with low birth weight. ‘ Sigmund Freud (2005 pg 481) states that children who had Cerebral Palsy often had other problems such as mental retardation, visual disturbance, and seizures.’
3 Main types of Cerebral Palsy
There are three main types of CP such as
Spastic cerebral palsy
Is the most common type of CP which involves the stiffness or tightness of the muscles. This is due to the messages to the muscles which is sent incorrectly through the damaged part of the brain. People with spastic CP both groups of muscles may become tighter which can make movements difficult or even impossible.
Athetoid cerebral palsy
Athetoid is the word used for involuntary unpredictable movements that occur in this type of CP. Children with this case of CP often have very weak muscles or feel floppy when carried.
Ataxic cerebral palsy
Ataxic is the least common type of CP. The word Ataxia is used for unsteady shaky movements or tremor. People with ataxia also have trouble keeping their balance. Many children do not have just one type but a mixture of several of these movement patterns.
Causes of Cerebral Palsy
Cerebral palsy results from damage to part of the brain. For most people with CP the cause is unknown. There are greater risk in babies born preterm and with low birth weight. The reasons for this is still unclear, CP may occur as a result of problems related with preterm birth or may indicate an injury has occurred during the pregnancy that has caused the baby to be born early.
Some causes maybe:
If the mother is exposed to certain infections such as German measles during the early months of pregnancy.
The baby not growing in the correct rate during the pregnancy.
If there is a lack of oxygen at any time supplied to the baby. This is of particular concern during birth. Research suggests that in some cases this maybe due to abnormalities already present in the baby which can affect the baby during the birth process.
Shortly after birth if an infant develops a serve infection such as meningitis or encephalitis, which is in rare cases may result in brain damage
If a near death accident occurs for example with a near drowning or car accident.
Symptoms of Cerebral Palsy
Cp is often not a condition that is noticeable at birth. It may take several months, or even years, to notice these subtle symptoms. It is the failure to meet some of the milestones which will alert your child’s pediatrician to developmental delays.
Some classic symptoms of cp that may not be noticed shortly after birth include:
Either extremely loose (hypotonia) or stiff ridged (hypertonia) muscle tone
Problems sucking and swallowing
The classic arching of the back, and the hyperextension of the arms and legs
Usually an individual exhibits extremely stiff muscle tone, by arching the back and hyper extending the extremities or lack of muscle tone at all. Additionally, the muscles that help us to suck and swallow can be affected by cp which results in a permanent feeding tube in severe cases.
Characteristics of Cerebral Palsy
According to Nixon and Gould (1996 pg 155) states ‘ Cerebral palsy will vary in its characteristics from a mild speech disorder to a severe lack of muscle control, including bowel and bladder control. While brain damage is the common cause, no two children with CP will have exactly the same characteristics.’ Some other characteristics people may have with cp:
Disorders of hearing- people with cp sometimes also have hearing problems
Disorders of eyesight- people with cp may have squints or other visions
Epilepsy- people with cp may also have recurring seizures (fits)
Intellectual disability and learning difficulties- children and adults will vary within their intellectual and leaning capabilities. Some children will show the same intellectual ability, but will differ in their physical ability
Perceptional difficulties- perception is making sense of information gained from the senses, which enables people to move around obstacles. Judge sizes and shapes of objects and understand how lines are connected to form different letters. Children who have cp may have problems with perception because their brain may have some difficulty interpreting the messages it receives from the senses
Speech difficulty- people that have cp may find it hard to talk, as the muscles of the mouth may be affected. Some people cannot say any words at all, where there are others that may be mildly affected and can say some words but it may not be very clear to understand.
Eating and drinking difficulties- cp can affect muscles that open and close the mouth and the muscles that move the lips and tongue also may be affected. Some may also have some difficulties chewing and swallowing certain foods
Learning difficulties- children who have cp may experience specific learning difficulties such as:
Short attention span
Motor planning difficulties (organization and sequencing)
Implications of Cerebral Palsy
Healthy, physical active child:
Children who have Cerebral Palsy work mainly on their gross motor skills which include balancing, walking sitting and climbing stairs as they find this difficult to do. They also try to improve on their muscle tone, posture and balance through their therapy sessions. Depending on what stage of Cerebral Palsy they have and also on their individual needs depends on how often they receive physical therapy to improve these abilities.
Healthy, physical active child
They focus on their muscle control and coordination which is needed for daily routines. Some children have trouble with their fine motor and hand- eye coordination. They find it very hard to eat, bath and dress themselves as they have very little fine motor movements.
Some children with CP sometimes feel a burden to others due to their disability and lack of control and may also feel angry and depressed from time to time. In some cases children with CP are unable to communicate verbally on how they may feel and can not express their feelings for they may not be able to talk. In order for them to expresses their feelings they may cry, scream make certain noises to communicate how they may feel. Being teased or treated like a baby may also add to these feelings. There are very special organizations that can help the child and their families seek help and advice within CP.
Children with CP may have some difficulty with their speech as it may not be very clear. They may also have trouble with sucking, swallowing, chewing and may dribble. Therefore a speech therapist can help with advice on different ways of communicating. Some of these ways are by using signals, eye movements, symbol boards and picture boards. They can also use a special device called the Electronic Voice Synthesizer which imitates a variety of sounds. Some children with CP may not speak at all.
Children with CP may find it difficult making friends as speech and hearing problems can get in the way. Most children tend not to be friends with other children that have a disability as they are different from everyone else. By allowing children with CP to play and join in with group activities this helps develop life skills with other children and also educates the other children on their abilities and disability. Special learning CP teachers are available to help assist child with CP to interact with others. Many children with CP have grown up and have been able to maintain jobs and a successful career.
Children with learning difficulties may need special help in schools from an educational psychologist. Sometimes the child may have trouble learning to read or with drawing and math. The child may be very clever, but needs extra time to learn some things. As they have trouble using their fine motor skills this is a disadvantage to them as they have no control of their coordination. For children with CP to explore with create arts need some adjustments to their materials/ equipment e.g. using thicker textas, knob crayons or bent textas.
Spiritual and moral child
Children with CP are able to express their feeling but sometimes are not able to communicate verbally therefore they may make certain noises or signals to express what they want and need. Some children are quite independent and can make their own choices and decision but others may need certain assistance such as an electric wheel chair or a electronic voice synthesizer.
Sense of self child
children with CP need a lot of assistance when it comes to self help skills as they have no control over their body and movement. In some cases they can dress, bath, drive and have full independence of their lives where others don’t have the ability to do so. If children with CP are given to self-critical thoughts such as "I'm no good" or "I can't do anything right," they may become passive, withdrawn, or depressed. Faced with a new challenge, their immediate response is "I can't."
Children with CP are able to think of what they need or want to do but have delayed sense when the messages from the brain to the muscles don’t connect and need time to think about what the brain is telling them to do. Many people with Cerebral Palsy are able to develop certain skills and can live a normal life. Certain children can choose their own play and in some cases know when they need to go to the toilet where others need reminding or assistance.
Modifications to the services
Seating is important for all children in order to attend, participate and successfully complete activities. Some children may require modified seating such as corner chairs or bucket seats to allow them to participate in all activities. Other children may require simple adaptations to existing chairs. Good sitting posture includes:
Pelvis: symmetrical and upright with bottom well back in the seat
Hips: flexed (bent) at 90 degrees
Head: upright and symmetrical
Feet: flat on the floor
A table at the correct height is essential. Ensure the children can rest their elbows comfortably on the table.
Many children with cerebral palsy can eat independently where as others will have varying degrees of difficulty. Some children may show difficulties with chewing and swallowing food and drinks. Children with cp may reluctantly bite on a spoon and may not be able to use their lips to get the food from the spoon. Sometimes their tongue may stick out when swallowing food and drink.
Ideas to consider:
Children with cp should be seated with the group at the same height as their peers
Some children with cp may need more time to complete their meals regardless of the amount of assistance required
If a child has difficulties swallowing ensure that his/ her head is forward and in the midline with the chin slightly down. This may reduce the risk of food or drink going down the wrong way
Adapted cups or cutlery could be useful
At the end of the meal ensure the child has finished all the food in his/her mouth before moving onto another activity or rest time
When taking up toilet training it is important to respect the parents’ decision as to when they want their child to start toilet training. This may vary from approximately 20 months to 4 yrs. Children with cerebral palsy may be ready for preschool but not toilet trained. This may be due to:
Decreased sensory awareness (not know if wet)
undeveloped bladder or bowl
not have an understanding of toileting sequence
lack of ability to communicate the need to go
Once a program has been planned with the family all members of the centre’s team need to be aware of the details so that a consistent approach is used.
Ideas to consider:
For children who are not toilet trained, consider the safety, self esteem and privacy needs to be given when nappy changing
For older children consider using pull ups rather than nappies as they can change more privately
Ensure that all the team knows the child’s mode of communicating the need to go to the toilet. This may be by signs, sounds, words or pointing to a picture or a symbol e.g. symbol of toilet or on a watch
Allow time for the child to get to the toilet to complete the toileting routine
Plan for timing of toileting so that the child does not miss out on other activities e.g. send him/her in the group first
A child with cerebral palsy needs the same opportunities as other children. To include children with cerebral palsy it may be essential to make changes to equipment and plan how materials will be offered so that the child with cerebral palsy can participate as much as possible in all areas of play and activities and to learn how to be as independent as possible in play and life skills.
Ideas to consider: art and craft activities
A non slip mat can be used under paper or boxes
Attach knobs to stamps to make them easier to grip onto
Have a variety of easy to use scissors e.g. self opening, spring loaded, styrex or mounted
Holders can be used for brushes, texters or crayons
Use slop boards on table tops to hold papers for painting or drawing for children who have difficulty drawing on a flat surfaces or who may have visual difficulties.
Support services and forming partnerships with families
Some children with additional needs may require extra resources to maximize their inclusion into the child care setting. According to Nixon and Aldwinckle (1997 pg 153) states that ‘ care for children with disabilities is increasingly seen as the responsibility of the family and the community rather than specialized institutions.’ Assistance is available through:
INCLUSION SUPPORT PROGRAM (ISP)
ISP is a federal government program that supplies children’s services with realistic advice and support in including children with additional needs into a quality child care environment. ISA will employ inclusion support facilitators (ISFs) to work directly within children’s services to provide practical advice and to ease access to arrange of support intended to create a quality care environment inclusive of all children.
INTERVENTION SUPPORT PROGRAM (ISP)
ISP provides extra support towards the cost of delivery of educational services with children with additional needs. This program supports learning and educational development opportunities for children with disabilities for children who are low school age and who are attending a nonprofit early childhood settings which prepare them for or support their inclusion into regular preschools and schools. This funding is available through the department of education and training. Contact on: (02) 92668222. Guidelines and application forms can be found at www.det.nsw.edu.au/eas/isp/
Provides funding to entitled NSW services to help children with additional needs access a quality early childhood or vacation care experience. Contact the Gowrie Child and Family line on (02) 95570900 or 1800803820
THE SPASTIC CENTRE
This service aims to provide a family-centre approach that meets the individual needs of children and their families. Through a range of information, support, therapy and educational programs aims to:
Promote inclusion and independence of children and families in the community
Promote activities which can be integrated into the child’s daily routine to help the child reach their potential
Encourage families and older children to identify their own priorities and needs and to feel confident about the choices they make. www.thespasticcentre.com.au
Nixon, D and Gould, K (1996)Emerging, child development in the first three years, second edition, Social Science Press
Dr Paul Pimm, (1999),Living with Cerebral Palsy
Judith Peacock, (2000), Cerebral Palsy
Nixon, D and Aldwinckle, M (1997), Exploring- child development from three to six years. Social Science Press