DK Training Booklet

Thursday, May 31, 2012

Development of Supportive Packages for Parents and Teachers of Children with Cerebral Palsy (03-18 Age Group)

Training Booklet

KNOWLEDGE ABOUT CP

PARENTS & TEACHERS

Introductory text for the module (including aims and rational)

This training module is produced in the scope of CP-PACK project and in accordance with the Need Analysis Report derived from the results of the focus group interviews and questionnaires among parents and teachers of children with cerebral palsy.

This is primarily a theoretical training module, which on the basis of the latest knowledge of the brain and neuroplasticity will approach the subject in different matters. At the same time, parents as well as teachers contain a lot of valuable knowledge from practical experiences. Therefore the course should also be a place where participants (parents/parents, teachers/teachers and parents/teachers) get an opportunity to discuss and share their own practical experiences. This way participants will be inspired by each other in how to implement latest knowledge in praxis.

Goals

Improve participants’ knowledge about cerebral palsy – what it is, how it occurs and what can be done to compensate for accompanying difficulties.

• 1. Improve awareness of the most recent knowledge derived from research and how the brain works, the complexity of the diagnosis.

  2. Improve the understanding of CP in it’s aspects of motor- cognitive- and learning disabilities.

  3. Improve the understanding of the special conditions following adulthood when having a disability.

Aim In General

Cerebral Palsy is a condition that cannot be cured. But the brain can be trained and by that be able to work and function in a better way and by that increase the ability of learning new skills.

The aim of this module is to increase the basic understanding of CP in different aspects.

For Parents

The parents in the need analysis, all express a general need for more knowledge about CP. Most parents have read a bit about the subject, but apparently there is no greater inclination to pick up on the subject of CP through reading. At the same time, all informants express an extensive need to obtain a more exact knowledge about CP. For instance, most parents know that cognitive, as well as motor problems are a part of CP, but they do not seem to have a more profound understanding of this actually entails.

The road to understanding, to acceptance and to appropriate compensation for different kinds of daily challenges is lead by knowledge and insight. What does the latest CP research tell us? How does CP emerge? What consequences does it have for the child’s development? What is visible (the motor part) and what is visible to a lesser extent (the cognitive and perceptual parts)? And what are the consequences hereof regarding social participation, schooling, spare time etc.? Why is it so difficult to predict the individual child’s development in all its aspects?

Parents can only express a lack of understanding and a lack of knowledge regarding subjects they already know pose challenges in daily life. But other subjects, that research has proven to be important in parents’ participation in their child’s development, are not necessarily something that parents are specifically aware of. For instance, parents can have a huge positive impact on a child’s development by gaining knowledge on the importance of diet.

For teachers

According to the need analysis teachers will benefit of more knowledge, especially in terms of understanding the cognitive side of CP.

Knowledge on CP in relation to cognition is vital in understanding how to give optimal support to a child with CP and it’s learning opportunities. In some schools and other institutions it is still common to perceive CP as primarily being a motor disability, instead of an impairment that, to some extent, also affects cognitive and perceptual functions.

It is a fact that a traditional way of perceiving CP (primarily a motor disability) is not an adequate foundation for the pedagogical and the teaching efforts, and then you risk an inappropriate result, since this approach has no focus on the child’s potential cognitive and perceptual challenges.

CP is a very broad diagnosis, which can result in very different individual manifestations. It can appear in different combinations and affect the child mildly or to a high extent, which makes it important for teachers and pedagogues to focus on potential problems and connections regarding CP in order to meet each individual child with the most optimal approach. This can be difficult for a teacher who may have several children with different diagnosis or difficulties, which only accentuates the importance of discussing special bearings concerning children with CP in the workplace. This goes for both normal and special institutions.

Learning outcome

Participants are informed about CP based on the most recent knowledge derived from research. This includes knowledge about CP as a brain damage and how the brain works. Viewed in the light of CP as a brain damage, participants will also be aware about the complexity of the diagnosis and the understanding of CP in it’s aspects of motor- cognitive- and learning disabilities. As such participants will know that CP occurs within the specific child in it’s own particular and personal ‘edition’, even though some traits may be common among children with CP. Also the participants will become known with other parents’ and teachers’ experiences, aquire new/different perspectives upon one own’s situation and may be inspired by others when it comes to new initiatives and actions.

For Parents

Participants are aware that these are important issues in order to understand and meet their own child with CP and it’s individual CP related challenges in every day life.

For Teachers

In general participants have learned that it is possible and desirable to comply with CP related challenges among the students, when it is founded on updated CP knowledge in order to identify and work with adequate pedagogical approaches, strategies and tools.

Step by Step presentation

1. General Knowledge about CP

Session Overview:

This session will bring an understanding to the participants about the history and etiology of the diagnosis Cerebral Palsy. The session will contain an explanation of the most common symptoms which are results of the pertaining brain damage and present an understanding of the complexity of the diagnosis and the symptoms following. At the end there will be a walk through the most common ways of addressing the diagnosis in relation to treatment – which professionals may be involved and what are the main tasks of each profession.

Learning Outcomes:

• • The participants will know the latest definition of the diagnosis “cerebral palsy” and will understand the condition as a brain lesion which cannot be cured.

  • The participants will know the etiology of the diagnosis and they will know about the wide range of symptoms that are possible consequences of the brain damage.

Session Contents:

The main idea – information

Cerebral Palsy today

Today cerebral palsy is regarded as a multifaceted disorder typified and marked by developmental disorders that have versatile affects within the enormous diversity and complexity of the brain. This implies that cerebral palsy must be described and defined as an ample complex condition characterized by great individual differences and bridging the overall range from motor to cognitive behaviour.

In spite of the fact that there is no cure for cerebral palsy rehabilitation strategies, including training and learning programs could often increase the capabilities of the individual child if provided in sufficient amount and within up-to-date best-practice. The main objective is to enhance the individual potentials to live a full life by doing everything possible to surmount the impairments and realize new ways to compensate and thereby accomplish the tasks that comprise difficulties.

Rehabilitation strategies should be directed, if at all possible, at preserving and improving the developmental process through all its facets and stages at appropriate ages. Research demonstrates that directive techniques aimed at specific disabilities do not bring better results.

What is cerebral palsy?

By far the greater numbers of the developmental malfunctions in the brain that lead to cerebral palsy occur before birth. A few characteristic types of brain damage together establish the core contributory causes to a broad range of cerebral palsy cases.  These brain damages cause either the appearance of degeneration or crumbling of brain tissue, or some type of haemorrhages within the brain tissue.

The result is varying degrees of damage to the nerve fibres, which imply that the extremely complex communication materializing in the neural circuits is disturbed and damaged by disruption or regular destruction to the nerve fibres and thereby compromising the fragile interaction from neuron to neuron. Subsequently injury of this nature could have substantial influence on the fundamental function of the large scale circuits in the brain.

Among the symptoms from these types of brain damage are most importantly a reduced overall attention and capacity of sustaining attention. More specifically are lacking in capacity for completing a process, some degree of absent concentration and imbalance of tonus (tightening) in the muscles. Also motor behaviour controlling balance and precision of single movements are affected. Studies on brain imaging indicate that the brain damages, prior to cerebral palsy, are often found in the deep-lying areas of the brain’s white matter around the brain nuclei where supporting handlings of decoding sense stimuli are concentrated.

These fundamental processes systematize the global task of organizing, controlling and managing all the sense stimuli that is computed in the brain. The brain is a multisensory processor in which inputs from different senses complement, modulate, and interact with each other, regardless of the specific senses involved in order to select, regulate, increase or inhibit, integrate memory and simulate motor actions etc.

Suggested readings

http://www.ncpad.org/disability/fact_sheet.php?sheet=119

http://www.scope.org.uk/help-and-information/cerebral-palsy-and-associated-impairments

http://www.scope.org.uk/help-and-information/education/cerebral-palsy-toolkit

A brief tour down history Lane  (by Peder Esben Bilde)

The English surgeon William John Little published in the 1860’s, the first descriptions of a disorder that affected children early in life causing motor impairments. Dr. Little focused on the fact that the children had difficulties in grasping, crawling, and walking.

Many of the cases that Dr. Little observed were born following obstetrical complications. This led Little to believe that the causes of cerebral palsy could be traced back to lack of oxygen during birth, which damaged brain areas in control of movement.

But in 1897 Sigmund Freud, then paediatrician, deviated from this conception of cerebral palsy. Freud noted that children with cerebral palsy often had other deficits than the physical motor symptoms and that children with cerebral palsy not always were born after difficult deliveries, and many children who did have difficult births did not prove to have cerebral palsy. Freud suggested that the disorder might have roots earlier in life, during the brain's development, as difficult births often is a symptom of deeper effects that influence the development of the child prior to birth.

In spite of Freud’s observation, the cause and effect relationship that birth complications causes most cases of cerebral palsy has to some extent lasted until today and is still experienced among families and health professionals. In the 1980’s research concluded from more than 35,000 newborns that complications during birth accounted for less than ten percent of the cases of cerebral palsy.

Cerebral Palsy today

There is no one standard strategy that is appropriate for each and every individual with cerebral palsy. After the diagnosis is established a team of health care professionals will categorize the individual’s specific disabilities and needs. Then in a collaborative setup with the child and his or her family a suitable plan is agreed upon to meet the core needs of the child.

The team of health care professionals will include expertise within the following:

• • Physical therapy

  • Occupational therapy

  • Speech therapy

  • Counselling and behavioural therapy

  • Medicine

  • Surgery

  • Braces and other orthotic devices

  • Mechanical aids

  • Communication aids

The members of the team will most probably range the following:

• • A paediatrician or a paediatric neurologist

  • An orthopaedic surgeon

  • A physical therapist

  • An occupational therapist,

  • A speech therapist

  • A psychologist

  • An educator

  • A social worker

No matter what type of strategy and therapy are being planned it will have to involve doing most of the actual training at home in order to gain sufficient intensity during the program. The support of the family has proven to be a very important factor with the team of health professionals acting as supervisors.

The rehabilitation program should cover the whole range of individual needs and be prolonged for a period long enough to give the child optimal prospects of growing into adulthood with as much control over own life as possible.

Considering the needs and demands of the family as a whole also is a key factor of the planning. The child with cerebral palsy is in many respects dependent upon the capacity of the surroundings.

An essential process is for parents and child to come to terms with the situation by accepting the disabilities. By recognizing and accepting the impairment – its strong sides and the limitations – it becomes possible to live with cerebral palsy and to perform in social interaction and participation.

A well conducted rehabilitation plan will support an open dialog and pass on information in order to establish a respectful partnership between parents and the team of health care professionals.

The most common specific therapies include.

• • Physical therapy

  • Physical therapy develops individual programs of exercises and activities that focus on the principal aims of increasing muscles strength, avoiding atrophy or deterioration of muscles not being sufficiently used. Special attention is on keeping muscles from becoming rigid and inflexible. The key word is activity.

Occupational therapy

Occupational therapy is directed at upper body functions, especially the hands, improving posture, and mastering the individual activities of daily living, like eating, dressing oneself, and using the bathroom. The aim in developing the individual level of independence is to enhance self-confidence, and also to help reduce dependency on parents and caregivers.

Speech therapy

Speech and language therapists observe, diagnose, and treat the communication disorders associated with cerebral palsy. They develop a program of exercises to teach children how to overcome specific communication difficulties. Speech therapists can also help children with severe disabilities learn how to use special communication devices, such as a computer with a voice synthesizer.

Orthopaedic surgery

Orthopaedic surgery is often recommended when spasticity and stiffness are severe enough to make walking and moving about difficult or painful. Often surgery is used for lengthening of tendons and other forms of corrective interventions.

Medical treatment

Medical based options in cerebral palsy are rather few. Mostly used among the available medicines are Diazepam, Bachlofen and Botulinum toxin. In each case of cerebral palsy an individual appraisal makes the basis of medical treatment.

http://livingwithcerebralpalsy.com/pdfs/CPuk.pdf

http://www.spastikerforeningen.dk/5storage/271/cp2dk.pdf

• • Bax M., Goldstein M., Rosenbaum P., Leviton A., Paneth N., Dan B., Jacobsson B., Damiano D. (2005) “Proposed definition and classification of cerebral palsy”. Developmental Medicine & Child Neurology, April, 47: 571

  • Cioni G, Sales B, Paolicelli PB, Petacchi E, Scusa MF, Canapicchi R. (1999). „MRI and clinical characteristics of children with hemiplegi cerebral palsy”. Neuropediatrics 1999 Oct; 30(5): 249 – 55

  • Damiano DL. (2006). “Activity, Activity, Activity: Rethinking Our Physical Therapy Approach to Cerebral Palsy”. PHYS THER November 2006 86:1534-1540; doi:10.2522/ptj.20050397

  • Garves P. (1995). „Therapy methods for cerebral palsy” Paediatr Child Health 1995 Feb; 31 (1): 24 – 8

  • Guzzetta A, Mercuri E, Cioni G. (2001). „Visual disorders in children with brain lesions: 2. Visual impairment associated with cerebral palsy”. Eur Jour Paedia Neurol 2001; 5: 115 – 19

  • Krageloh-Mann I, Helber A, Mader I, Staudt M, Wolf M, Groenendaal F, de Vries LS. (2002)„Bilateral lesions of thalamus and basal ganglia: origin and outcome”. Dev Med Child Neu 2002; 44: 477 – 484

  • Kuban K.C.K., Leviton A. (1994) “Cerebral Palsy”. N Engl J Med 1994; 330:188-195

2. General Knowledge about the brain and neuroplasticity

Session Overview:

This session will present an overall introduction to the way the brain works in dynamic and changeable circuits and which consequences this has on the way one should address the complications combined with Cerebral Palsy.

Learning Outcomes:

The participants will as overall reach an understanding of how the brain works in circuits and how these are not static or rigid, but quite reverse and they will understand the consequences of this knowledge in relation to how to address the symptoms of Cerebral Palsy.

Session Contents: The main idea – information

The human brain contains approximately 120 billion neurons each assumed to be in contact with up to 10.000 other neurons within large scale networks that span over several areas of the brain. The single synapses within the active circuits develop and work in interplay with other synapses to adjust the neural connectivity across the brain.

The whole of the nervous system, including the brain continually undergoes structural and functional modifications adapting to changes in both inner and outer environment and to new information to be processed and stored.

The fundamental systemic mechanism of the brain is characterized by neuroplasticity i.e. the capability of the neural circuits to change and remodel in accordance with learning and new experiences. The actual functional shaping is generated by altering the number of active synapses and adapting the strength of the single synapses.

The circuits of the brain are not static or rigid but quite the reverse they are extremely adaptable, all the time changing in order to mirror the modifications that emerge in the individual neurons. The neurons on their part respond to changes in our body and in the outer world. Furthermore the adjustments of brain circuits represent and echo that an individual in one way or the other is in continual action. Even in so called states of resting or daydreaming the brain is never idle – it is ready to remodel at any time. The fundamental property of the brain is plasticity, i.e. the ability to change in accordance with inner and outer demands. As individual beings we are persistently on the move. Sometimes we are close to other beings (people or animals), other times we move away from them. In the world of hands-on we move to touch objects and then move away again or as we sense a taste we are bound also to experience that the taste goes away. Being engaged in a conversation implies that it will come to an end. Sensory inputs from the body parallel different emotions. In fact the full context in which the brain is situated is under constant changing either from pre reflective influence or from the stimuli of our actions. Permanently the circuits of the brain develop appropriately. So in terms of biology, there is no off switch in the brain.

One pivotal aptitude of the brain is the feature of learning. It implies functional changes within the circuits which has the effect of strengthening the synapses. A more powerful synapse is one that improves in firing and so facilitates the interaction of neurons. Training and learning are in this respect two sides of the same coin. Also the capacity of memory originates in this process. Memory is information kept within stable networks and is retrievable when synapses open up the network by being activated.

Suggested readings

IN DANISH

http://www.elsasscenter.dk/6storage/256/14/info-ark_-_om_CP.pdf

Lone Frank at the Danish Physiotherapist Conference 2009: Den femte revolution – et videoforedrag: http://lmp.lynxmedia.dk/Danske_Fysioterapeuter/Fagfestival_2009/Torsdag/Den_femte_revolution/export_popup?serverinfo=1237902170203661292&skin=Fysio/400x225&object=Danske_Fysioterapeuter/Fagfestival_2009/Torsdag/Den_femte_revolution&mode=event&isMac=false

IN ENGLISH

Norman Doidge – a video speak: “The brain and neuroplasticity”:

http://www.youtube.com/watch?v=tFbm3jL7CDI

Bear MF., Connors BW., Paradiso MA. (2006) “Neuroscience – exploring the brain” Lippincott Williams and Wilkins

Doidge N. (2008) “The Brain that changes itself”. Penguin.

3. Training and learning based on neuroplasticity

Session Overview:

On the basis of the above sessions, this session will describe how the knowledge about the way the brain works must be used, when planning how to address cerebral palsy regarding training.

The session will begin with a theoretical approach to which aspects must be taken into consideration, followed by a discussion about how training can be part of most everyday activities, not in all times dependent on the presence of i.e. a therapist.

Learning Outcomes:

The participants will know which theoretical aspects must be taken into consideration, if any remaining and positive results from training shall be expected. On the basis of this participants will learn about ideas and tools of how to implement training in many everyday activities at home and in school/institution.

Session Contents: The main idea – information

Intensity and sufficiency

Children with brain damage require multi-facetted training and learning strategies. The present economical resources do not make it possible to offer sufficiently intensive and persistent motor and cognitive training. Therefore new technology must be taken into account in order to concentrate the intensity of the rehabilitation programs.

Learning and training is a process which irrespective of the method of learning is imparted through the body by means of the senses and motor function. At the core of this approach is the understanding that awareness, cognition and movement are really undividable, and that the development or recovery of ability within any single of these domains requires the integrated co-operation of the impaired individuals and their brain in all of these aspects of rehabilitation. This signifies that isolated impairment in ‘movement’ or ‘awareness’ or related ‘cognition’ is a human impossibility.

Motor function and muscular activity are entirely controlled on the basis of ‘feedback’ from our bodies and brains, and so control of movement is guided very directly by the cognitive resources that guide all of our behaviours. They will be weaker or stronger, enabled or disabled together. Neurological processes that control the flow of cognition and thought are not really different from those that control the flow of movement — and in fact are totally and utterly entangled.

Inducing the brain’s plasticity in order to drive beneficial changes requires a carefully laid out individual learning or training program with precise stimuli delivered in a proper sequence with accurate timing. To obtain this the training program must be:

1) Intensive - and continuous over a sufficient period of time.

2) Repetitive - and progressively challenging.

3) Executed with total commitment - and paying close attention

Sensory experiences apply a powerful influence on the function and future performance of neuronal circuits in the brain. Remodelling of synaptic connections is believed to be one mechanism by which neural circuits store information about the sensory world. Learning and daily sensory experience leave minute but permanent marks on neural connections and storing of lifelong memories is confined to such large stable connected networks.

Learning

The expansion of the neural networks is a transient occurrence that serves to expand the pool of neurons that respond to behaviourally relevant stimuli so that neural mechanisms can select the most efficient circuits to accomplish the task.

To be more precise, neural plasticity is used to recognize the minimum number of neurons that can accomplish any given task.

Learning results when individuals select the most efficient circuits and principally relate these neural responses with the appropriate behavioural response.

The steps to go through in learning and training comprise the following:

(1), initial learning generates a population of new connections in the neural circuits

(2), this population is then reduced to a small subset; and

(3), skilled performance is maintained by this small but stable subset of new connections

The conclusion arrives at the understanding that the brain is plastic and dynamic and that it functions in large scale complex networks – (circuitative). Furthermore there appear to be no true difference between cognition and motor behaviour – they share the same subjacent systems (circuits). Obviously there are areas in the brain that may be “critical” for a particular behaviour, but the behaviour itself arises from combined actions of many areas.

Training and learning programs that motivate body and thinking together are therefore well suited to improve ability in the child with cerebral palsy.

Suggested readings

IN ENGLISH

Michael Merzenich: “Re-wiring the brain” a video-talk:

(Neuroscientist Michael Merzenich looks at one of the secrets of the brain's incredible power: its ability to actively re-wire itself. He's researching ways to harness the brain's plasticity to enhance our skills and recover lost function.)

http://www.youtube.com/watch?v=Z41BTeAU7DI

Bilde Peder E, Kliim-Due Mette, Rasmussen Betina, Petersen Line Z, Petersen Tue H, Nielsen Jens B. (2011) Individualized, home-based interactive training of cerebral palsy children delivered through the internet. BMC Neurology. 2011; 11:32

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3061895/?tool=pubmed

Berthoz A. (2000). „The Brain’s sense of movement”. Harvard University Press, Cambridge, Massachusetts

Gazzaniga MS, Ivry RB, Mangun GR. (1998) „Cognitive Neuroscience: The Biology of the mind”

W.W. Norton & Company, New York – London

Stein DG, Brailowsky S, Will B. (1995) „Brain Repair”. Oxford University Press, New York 1995

IN DANISH

http://www.elsasscenter.dk/6storage/256/14/info-ark_-_mitii.pdf

4. Food - the importance and effect related to neuroplasticity

Session Overview: Based on the previous session, this session will provide an extensive overview of the effects of dietary nutrients on this structure and function. Moreover, attention will be drawn to the extensive interplay between nutritients, exercise, hormones etc. in the shapening and functioning of the brain. Finally, some practical advise on the type and timing of the food and eating pattern will be touched upon.

Learning Outcomes: The participants will obtain increased awareness on dietary effects on the brain and practical advise on implemetation of a healthy diet.

Session Contents: Just as the muscle needs protein to be able to gain from training, the brain needs a variety of important substances in the diet (sometimes exclusively from the diet: vitamins, minerals, essential amino-acids and essential fatty acids, including omega- 3 polyunsaturated fatty acids) to be able to develop and function optimal. For long it was not fully accepted that food can have an influence on brain structure and function, including cognitive and intellectual performances. But most micronutrients (vitamins and trace-elements) as well as macronutrients (glucose, amino acids and fatty acids) have been directly evaluated in the setting of cerebral functioning.

So, when the brain is active – which means around the clock, all life through – it has the need for nourishment and energy. The greater parts of the nutrients that the brain applies are produced in the brain itself while the remaining derives from other organs in the body.

The prior condition for the correct nutrients to be produced is however adequate access to precursors of these ingredients. In all essentials only one source exists from where the precursor nutrients can enter the organism and that is our diet.

“The belly rules the mind”. This is certainly true when it comes to the brain and the nutrients needed to develop the neural networks and increase the efficacy of the synapses. Fortunately it is quite easy to obtain the right ingredients as most of them are found in what could be characterize as “ordinary” food.

Two main aspects exist in relation to diet and cerebral palsy:

• • Impact from the congenital brain damage on intake and metabolism:

  • A brain damage often has an effect on the metabolic control resulting in lack of intake from the food being digested.

  • Optimal learning and plasticity depends on special precursors in the diet:

  • This is true for all brains.

The relative quantity of specific nutrients might affect cognitive processes and emotions. Dietary factors could have a direct influence on neuronal function and synaptic plasticity and research have revealed some of the vital mechanisms that are responsible for the impact of diet on brain health and mental function.

It has been demonstrated that the rates at which brain cells produce a number of the most important compounds, for example the neurotransmitters serotonin, dopamine, and acetylcholine - depend on brain concentrations of their precursors.

Infants with significant prenatal brain damage have increased nutritional requirements in the first postnatal year so these children required a greater-than-average energy and protein intake to achieve appropriate growth rates or to catch-up growth in the first year.

Just like a muscle needs protein to be able to gain from training the brain needs the right precursors of substances to be able to learn and develop. The three fundamental needs of nourishment in relation to the brain are:

1) Building materials,

2) Control of mood, motivation and learning capacity,

3) Source of energy.

Suggested readings

Food, the importance and effect related to neuroplasticity

(by Kirsten Caesar)

The term neuroplasticity comprises all the changes in the brain, which will lead to changes in the functional outcome of the brain. These include changes in cognition, memory, concentration, mood, behavior, motor performance and similar.

The changes are brought about by either structural changes, i.e. number or size of neurons (or other brain cells) or number and places of connections between cells, but also by changes in processes of individual cells, i.e activity of enzymes, receptors, transporters, which will affect cellular metabolism, signal transduction within and between cells and other more “invisible” things than morphological changes.

The brain is built on the substances present in our diet, and need both micro- and macronutrients to maintain its structure and function.

FATTY ACIDS

Our brain consists of 60-70 % fat. Unlike muscles however, none of the the fatty acids are used for energy purposes. The fatty acids in the brain participate mainly in the architecture of the cell membranes. Among polyunsaturated omega-3 fatty acids, DHA (docosahexaenoic acid) is one for the major building structures of membrane phospholipids of brain and absolute necessary of neuronal function. It was first demonstrated that the differentiation and functioning of cultured brain cells requires not only ALA (alpha-linolenic acid), but also the very long polyunsaturated omega-3 (DHA) and omega-6 carbon chains. Then, it was found that ALA acid deficiency alters the course of brain development, perturbs the composition of brain cell membranes, neurones, oligod

endrocytes and astrocytes, as well as sub cellular particles such as myelin, nerve endings (synaptosomes) and mitochondria.

All cells and organelles in the brain are built by fatty acids, especially polyunsaturated omega-3 fatty acids. On average, one fatty acid out of three is polyunsaturated, thus obligatorily in our diet. A quantitative decrease in these fatty acids in the brain has been shown to result in impairment of membrane fluidity and membrane function (i.e. activity of enzymes, receptors, transporters in the membrane) (Bourre J.M. et al, 1989; Gerbi A. et al,1994), thereby affecting cellular metabolism, signal transduction and even regulation of gene expression (Kitajka K. et al, 2002; Barcelo-Coblijn G. et al 2003). A deficit in omega-3 fatty acids has in rats shown to affect the transport of glucose in the brain (Ximenes D.S. et al, 2002), as well as affecting monoaminergic neurotransmission, especially in the frontal part of the brain (de la Presa O. et al, 1999). It is thus evident, that there is a relation between the polyunsaturated fatty acids on one hand, and neurotransmission and behaviour on the other (Chalon S. et al, 2001).

The foods rich in omega-3 fatty acids providing the tens of grams of ALA required daily, are the oils prepared from rapeseed, soybean and walnuts. The highly unsaturated long-carbon-chain omega-3 fatty acids (EPA and DHA) are presents in fish and the fatter the fish the richer in these acids.

It must be noted that usefulness of capsules as dietary complement is not clearly demonstrated, if not containing natural fish oil triglycerides (or phospholipids). In their natural state, omega-3 fatty acids are not isolated pure compounds, but are parts of large natural molecules, triglycerides and phospholipids, that are bioavailable by the human body. To obtain capsules enriched in either EPA or DHA, these compounds must be destroyed (hydrolysed) and the omega-3 fatty acids purified and generally stabilised as ethyl esters. This results in a product that is no longer natural, but a chemical.

Also, it should be remembered that, in the case of very-long-carbon- chain fatty acids, supplementation must provide simultaneously both omega-3 (DHA) and omega-6 (ARA). Results of randomized controlled trials shows that DHA and ARA supplementation (with indeed ALA) is efficient at the level of neurological, neuro-muscular and cognitive functions (Uauy R. et al, 2003).

In brain the monounsaturated fatty acid, omega-9 fatty acid, are represented by oleic acid (18:1 omega-9) and nervonic acid (24:1) especially in myelin. For many organs, including peripheral nervous system, endogenous synthesis does not compensate for the absence of oleic acid in food, which must therefore be provided in the diet (Bourre J.M. et al, 1997).

PROTEINS

Important agents in the brain, like neurotransmitters , which are responsible for the signaling between neurons, are substances eventually formed of amino acids supplied by dietary proteins. Also the brains machinery - enzymes which catalyse all cellular processes, are derived from dietary proteins. Proteins are made up of 20 different amino acids - 8 of which are essential and have to be provided via the diet. The nutritional quality of proteins is extremely important: the presence of the indispensable amino acids (in quantity and proportion) determines their biological value. If the content of one of the essential amino acids is low, it constitutes a “limiting factor”, and limits the usefulness of the other amino acids, who are in plentiful supply. Thus, the amino acid profile of the cerebral extracellular milieu is a function of the content and nature of dietary proteins (Choi Y.H et al, 2000). Overall, proteins of animal ori

gin are of greater value than those of vegetable origin. Over consumption of tofu (bean curds), that is to say soy bean vegetable proteins, has been implicated in more rapid declines in cognitive tests during ageing (White L.R., 2000).

In practice, as the human body does not possess a reserve of proteins, they need to be eaten at every meal, especially breakfast. Milk and milk products are especially useful in this respect.

In any case, the effect of essential amino acids on brain functioning (including mood, sleep, eating) is a field of fundamental and clinical research that is booming. Dietary tryptophan, precursor of serotonin, plays a specific role. Apart from modulating appetite and satiety, it is involved in numerous functions such as sleep, sensitivity to pain, regulation of blood pressure, and the control of mood (Wurtman J.J., 1985; Wallin M.S. and Rissanen A.M., 1994). Serotonin cannot cross the blood-brain barrier (BBB), therefore it plays no role in cerebral nutrition - but tryptophan can cross from the blood into the brain thanks to specific transporters.

Another amino acid that has gained a lot of interest is tyrosine - the precursor of dopamin. It has been speculated that human intelligence has its roots in the growth of dopaminergic systems in the development of human cognition (Previc F.H., 1999).

Tryptophan and tyrosin are high in milk, egg, fish, meat and chicken and cheese.

It should be noted, that the availability of the digested proteins to the brain is greatly influenced by the level of dietary carbohydrates - it is therefore recommended always to eat carbohydrates along with proteins (Wurtman R.J et al, 2003).

GLUKOSE

The brain requires a steady supply of energy permanently day and night: (100 mg glucose per minute!) and an oxidising agent (oxygen). At rest, the adult brain uses about 20% of the dietary energy consumed and 20% of the oxygen inhaled. In adults, the brain represents no more than 2% of bodyweight. In children, consumption is even higher and reaches 60% in newborns. A child’s brain consumes twice as much glucose per unit of weight as that of an adult (Chugani H.T, 1998), which explains the undesirable results of hypoglycaemia (due to a poorly nutritional breakfast) on performance at school. It is thus logical that cerebral function, and thus the equilibrium and efficacy of intelligence depends on the quality (and quantity) of dietary energy. Since the brain runs only on glucose, and has no reserves (except for a very small amount of glycogen), satisfaction of its needs depends on supply, and thus depends on diet, as carbohydrate reserves in the human body are very limited. Not all the regions of the nervous system are

Session Overview:

Sensations are the way that we take in information from our environment (internally and externally) and then process them to make sense of what is going on in and around us. We are deeply dependent on our senses, for it is through them that we relate to the world we live in. We constantly receive impressions from our sense, and these impressions are sorted and processed in the brain. The American occupational therapist Jean Ayres has described the brains ability to perceive and interpret sensory impute as rush hour traffic. If you are not able to organize, direct and integrate the traffic during rush hour, then it will creates traffic jams and chaos, and the same can be said regarding the brain when sensory integration does not work.

Learning Outcomes:

To gain a better understanding of how sensory input is processed this session will cover a brief walk through the seven senses with emphasis on the proprioceptive sense and the vestibular sense and how it affects a child with CP when sensory integration does not work properly.

In addition, participants will gain insight into some of the compensatory strategies that can be used and integrated into daily life. There will also be a brief walk through the Alert program that support children, teachers, parents and therapists to choose appropriate strategies to change or maintain states of alertness.

Session Contents:

Sensory Integration is not an either/or matter. We don’t have perfect sensory integration or none at all. None of us organizes sensations perfectly. If the brain does a poor job of integrating sensations, this will interfere with many aspects o f life. There will be more difficulties and less success and satisfaction in life. Sensory Integration takes place unconsciously, by organizing the impression from all 7 sensory systems (balance and movement, muscle and joint, sight, feel, hear, smell and taste) and give meaning to what we experience by sorting all the information we receive and select what to focus on. This makes it possible for us to act or respond appropriately to the situation we are in and that is the foundation on which learning and social behavior rests in.

Many children with CP have difficulties in terms of developmental disabilities due to insufficient processing of sensory information. These difficulties can sometimes lead to major limitations in their learning and mastery of activity in daily life. In this session, the main focus will be on sensory function, the sense of touch and the proprioceptive and vestibular sense.

Children who are hypersensitive (overly sensitive) in the tactile area, does not like clothes that are tight, have marks or seams. Often they have a few favorite things, they want to wear all the time - jogging pants and soft shirts. They hate and fear getting their face washed, getting dirty hands, and getting their nails clipped, etc. They do not like to touch greasy sticky stuff like clay, finger paints, etc. They can get very upset over an unexpected touch and it can cause trouble by distinguish between threatening and non-threatening touch.

Eating Problems can also be caused by tactile hypersensitivity. Some children with CP do not like to get food with a certain consistency in the mouth. Tactile sensitive children have often difficulty in moving from milk to solid food, and they often get food stuck in the throat. Problems with sensory processing of the tactile area can also cause speech problems - the child may have problems shaping the sounds right because of difficulties with interpret and process sensory impressions from the mouth and be able to feel the speech organ positions.

The proprioceptive sense, in children with CP can be influenced by disturbances in the sensory process because the child gathers atypical sensory experience because of motor disorders. It may be disturbances in the sensory system, leading to reduced sensory information from muscles and joints, it may cause difficulties in perceiving and processing and interpreting sensory input, focus on relevant sensory input, place them in a relevant context and be able to ignore irrelevant sensory input.

Children with proprioceptive dysfunction spends a lot of energy to concentrate on each movement, the brain may know what to do, but they can’t figure out how to make their body do it. They are more dependent on vision than others, knowing how much pressure is needed to complete a task for example hold a cup of water, hold and write with a pencil, turn the page of a book etc. The ability to hold and maintain one’s postural muscles and responses, giving you a sense of security during movement is very often difficult for children having CP. For them it can be difficult to stand still for a long time, they may, have a great need to support their head, hold a hand or both, under it - or even put your head on the table to read and write. These Children get fatigued faster than other children and may need many breaks during the day. Children who are unable to move and use their body effectively like others can thereby become frustrated, give up, and lose self-confidence.

The vestibular sense provides information using the inner ear about balance and movement, and where our body “is” in space. It is the vestibular sense that can tell us whether we are sitting down or standing up, falling, etc. The vestibular sense detect the body's ability to keep itself up against gravity, the body's equilibrium, which means that we can keep the body upright when we are walking and stabilize the eye, while the head is in motion, which enables us to maintain a stable visual field, so the things we see does not flicker when we move.

By intolerance of moving the child may feel discomfort during fast movements, which for example can result in motion sickness.

Next to breathing, so is balancing security our main focus: to maintain attention to read a magazine or listen carefully to a radio broadcast, requires that we have a postural (balance) security. (Jean Ayres)

The same requirement applies for us when we are to perform fine motor activities such as eating or writing. First, we secure ourselves from falling, or restore balance to feel safe and physically comfortable. Only then we are able to read, listen or sew.

Visual perception is the process which ensures that we are able to perceive and interpret visual impressions. Many children with CP have visual perception difficulties. The child will be slow or unable to perform tasks, especially when the child are to use an object or performing tasks which requires cooperation with both hands. It may be difficult to brush one’s ​​hair while looking in the mirror or put on an elastic in the hair, put on a necklace or to take toothpaste on the toothbrush. Those things can be a big challenge. Clothes and buttons require also good visual perception. Coloring, puzzles, developing reading and writing skills can also be affected by poor visual skills. Just as it can be difficult to find your way around in the neighborhood or find things in a drawer. It can also be a challenge to learn to use computer keyboards and telephone. Play and leisure activities may also be limited by visual perceptions difficulties.

Arousal can be explained as a condition of the nervous system that describes how "awake" (alert) a person is in order to concentrate and stay focused on a task that is appropriate for optimal learning. Many children with CP can have difficulties obtaining, maintaining and changing arousal appropriate to the activity or situation that they are in. If you imagine that your brain and body is like a car engine, sometimes it runs too fast (high speed) and sometimes it runs too slow (low gear) and sometimes it runs just right. Through this engine analogy we can teach both children and adults with CP, strategies so that they can self regulate "their engine" so that parents, teachers and educators can give children with CP optimum opportunity for learning.

Suggested readings

IN ENGLISH

http://www.youtube.com/watch?feature=player_detailpage&v=NPEwwzAT_lc

http://www.youtube.com/watch?feature=player_detailpage&v=rfOov_bSwXg

http://www.pathintl.org/images/pdf/conferences/national/presentations%20for%20web/Adult-Preference-Sensory-Motor-Checklist.pdf

Bundy A, Lane S, Murray E : Sensory Integration Theory and Practice. F a Davis Co Second Edition 2002.

Dunn Winnie : Living Sensationally, understanding your senses. Jessica Kingslev Pub, 2007.

Miller, Lucy Jane : Sensational Kids, Hope and Help for children with Sensory Processing Disorder. Penguin Group USA, 2007.

Williams M, Shellenberger S: How Does Your Engine run. TherapyWorks Inc, 1999.

IN DANISH

Ayres Jean : Sanseintegration hos børn.Hans Reitzels Forlag, 2009.

Åldstedt L: Ergoterapi For Barn Med Cerebral Parese. Communicatio Forlag AS Trondheim 2006.

6. Most common cognitive and behavioural problems and strategies for compensation related to CP

Session Overview:

Based on knowledge of the typical brain lesions associated with CP, this session will cover the characterisation and manifestation (cognitive and behavioural) of the different cognitive problems.

The session will focus on the central difference between the description of the individual child and it’s cognitive impairments and learning impairments that arise from a lack of match between the child (given its individual difficulties) and the pedagogical and didactic context of the learning environment. Finally, this third item will relate typical cognitive problems associated with CP with typical challenges in the school and outline general supportive strategies.

Learning Outcomes:

Participants will acquire up-to-date knowledge about typical cognitive problems associated with CP drawing on recent, relevant empirical studies. Participants will become aware of how learning problems arise from individual cognitive problems but emerge in particular social settings and learning environments, where they are shaped by the organisation of the learning activities and the presence or absence of the right support of the child.

  Session Contents:

This session will cover the relations between the brain lesions associated with CP, the most common cognitive problems and how they are expressed as learning problems that need to be addressed by teachers and parents in corporation.

The cognitive problems associated with CP can be separated into non-specific and specific cognitive problems. The non-specific type of cognitive problems covers fatigue, varied performance level and slower information processing. Non-specific cognitive problems can be manifested in all types of activities. Even though they may manifest at a daily basis, they are among the most invisible consequences of CP and are often misunderstood as laziness, reluctance or stupidity of the child.

In addition, CP is associated with a group of specific cognitive problems. The particular constellation and severity of cognitive problems vary a lot between children with CP. Specific cognitive problems cover visuo-perceptual and visuo-constructive problems, problems with attention, memory and executive problems and communicational problems. In this session, special attention will be given to specific cognitive problems in attention and executive functions.

Impairments in attention and executive functions give rise to problems in many areas of learning, but often they are more pronounced in particular situations and school subjects than others. Attention is a compound function that covers both the ability to direct and shift attentional focus. Other parts of attention are the ability to control and maintain attention and to work with material within the attentional system. The last two are also considered part of the executive system. The executive system is another compound function that covers many different sub-elements; planning, monitoring, shifting, working memory, initiative, inhibition, emotional regulation. They are subserved by different neural networks in the frontal and subcortical part of the brain and because they draw on information from many parts of the brain, problems in executive functions are common in children with CP. Often, they are most pronounced at behavioural problems; impulsive or interruptive actions, uncontrolled emotional reactions, chaotic behaviour, lack of flexibility, lack of ability to organise school work and many more. Executive functions mature late and must always be evaluated in relation to the age of the child. Problems in attention and executive functions often cause problems in both learning and social participation.

It is important to know about the cognitive impairments associated with CP, because the knowledge may help to interpret the child’s way of acting. However, the cognitive impairments are only one side of the learning problem. The other side is how the learning of child is organised through the teacher’s demands and structural support. Cognition is an activity that can be supported or constrained by both brain lesions and the learning environment. The learning problems experienced by many children with CP arise from a mismatch between the child (with brain lesion and cognitive impairments) and its learning environment (without the right support). Barriers for learning are not solely in the child, but exist in the relation between the child and the learning environment. If supported rightly, the cognitive activities of the child have the potential to feedback on the neural system and change and develop it. However, the development of both cognitive functions and neural processes are dependent on the proper support of the child’s participation in learning activities.

The typical learning problems of children with CP emerge and evolve in relation to the pedagogical and didactic structure and demands through the child’s school trajectory. At times, the learning goals will be similar to same-aged peers without CP, at other times the learning goals need to be adapted to the current developmental level of the child. Relevant learning goals can be reached by round-about ways (e.g. computers for writing) or scaffolding (e.g. the teacher structures the work process for the child that cannot identify the steps in the process on its own).

In primary school, it will often be necessary to evaluate the adequacy of the teaching and the teaching material in relation to the cognitive challenges of the particular pupil with CP. The child with CP might work towards the same goals as his or her peers, but the teacher might need to adapt the learning activity of the child according to the child’s particular impairments. For example, due to motor, visuo-perceptive or visuo-constructive impairments, writing by hand is often more strenuous for children with CP, over and above the challenges experienced by all new writers. If the goal of the activity is to practice calculation rather than the writing of numbers, then child might solve the exercises orally, on a computer or by getting someone else to write the solutions. Another typical challenge is children with executive dysfunctions who need explicit instructions and training in how to get ready to learn. If the child with CP has attentional dysfunctions, support of the child will include a reduction of distracting stimuli.

In middle school, new subjects and an expanding curriculum add to the challenges experienced by children with CP. A slow writer or slow reader might be supported by the introduction of new aid’s that enable the child to focus its effort on the content of the material. The slow information processing might become more salient with rising demands and the teacher may need to adapt the learning activities of the child accordingly, either by granting extra time or by reduction of the content to be covered by the child, e.g. amount of reading or number of exercises.

Demands on the child’s executive functions usually increase through middle and secondary school as the child is required to work more independently and with more complex exercises. The executive dysfunctions of many children with CP become increasingly salient and require support and/or explicit teaching of how to plan and work with larger assignments.

Suggested readings

IN ENGLISH

• • Bøttcher, L. (2011). Cognitive Impairments and Cultural-Historical Practices for Learning: Children with cerebral palsy in School. H. Daniels & M. Hedegaard (eds.). Vygotsky and Special Needs Education. Rethinking Support for Children and Schools. London: Continuum Books.

  • Hoon, A. H. (2005). Neuroimaging in cerebral palsy: Patterns of brain dysgenesis and injury. Journal of Child Neurology, 20, 936-939.

  • Karmiloff-Smith, A. (1998). Development itself is the key to understanding developmental disorders. Trends in Cognitive Sciences, 2, 389-398.

  • Kolk, A. & Talvik, T. (2000). Cognitive outcome of children with early-onset hemiparesis. Journal of Child Neurology, 15, 581-587.

  • Okumura, A., Kato, T., Kuno, K., Hayakawa, F., & Watanabe, K. (1997). MRI findings in patients with spastic cerebral palsy .2. Correlation with type of cerebral palsy. Developmental Medicine and Child Neurology, 39, 369-372.

  • Schatz, J., Craft, S., White, D., Park, T. S., & Figiel, G. S. (2001). Inhibition of return in children with perinatal brain injury. Journal of the International Neuropsychological Society, 7, 275-284.

  • Vygotsky, L. S. (1993). The Collected work of L. S. Vygotsky. Vol 2: The Fundamentals of Defectology. New York and London: Plenum Press.

  • White, D. A. & Christ, S. E. (2005). Executive control of learning and memory in children with bilateral spastic cerebral palsy. Journal of the International Neuropsychological Society, 11, 920-924.

IN DANISH

http://www.spastikerforeningen.dk/6storage/521/1753/naar_en_elev_i_klassen_har_cerebral_parese.pdf

This leaflet elaborates themes from the session and can be used for further information.

Bøttcher, L. & Dammeyer, J. (2010). Handicappsykologi. Kapitel 6: Bevægelseshandicap. København: Samfundslitteratur.

Questions for reflection:

Think about a child you know with CP. Based in the descriptions from the session, may this child experience non-specific cognitive problems (fatique, varied performance, slow information processing) or specific cognitive problems in attention or executive problems?

Think about the way this child’s learning environment is organised. Does it seem to support the child’s cognitive activities? Are the child met with relevant and adequate demands and the necessary support? Or would the child benefit from adaptations of the support or the learning goals?

7. Pain/pain management – how to deal and compensate

Session Overview:

The session sets off by a short explanation about pain – what it is, how pain can influence the everyday life of a child as well as how one can talk to a child about pain.

Focus will be put on the complex, psychological nature of pain and how different psychological factors actively can be part of influencing the child’s experience of pain, in a negative or positive way.

Complementary treatments of pain will be mentioned.

Learning Outcomes:

The participants will increase their knowledge about pain, it’s complex, psychological nature and how different elements influence the experience of pain. This knowledge will make it easier to understand the specific child’s experience and the way it handles the pain.

The participants will know about complementary treatments as well as how they themselves will be able to influence the way the child will cope with pain and by that help the child in decreasing the feeling of pain.

  Session Contents:

Because of inappropriate weight on joints, inappropriate ways of moving and working with the muscles, involuntary movements, uneven growth of the spine etc., some children with CP may develop pain which can be acute, but also in danger of developing into chronic pain.

This session will present a short description of the difference between acute and chronic pain, the subjective nature of the pain as well as how it will be able to influence the child’s sleep, appetite, social life, physical activities, school life and other everyday activities. Also a pain scale and a pain figure will be introduced as tools which can help when talking to a child about pain.

Most people know the feeling of an acute pain, i.e. the pain one feels when visiting the dentist, having a blood test or falling and hurting oneself. But for some people – and among these are some children with CP – it becomes a condition growing up and living with chronic pains, which means pains lasting more than three to six months.

These feelings of pain can become very serious, resulting in an affection on the ability of sleeping through the night, on concentrating on other things during a day, and on the motor and social life and development as the pain may prevent the child from physical activities and playing with peers as well as being able to fully concentrate on what is going on in the classroom, with the consequense of reduced learning ability. This causing that the child is in risk of feeling different and left out as well as developing the feeling that some experiences will be lost as a direct result of the pains.

The feeling of pain is subjective. It is very different from person to person to which exend the feeling of pain is registered. Some people have a lower pain threshold than others. Therefore it is not possible to perform a direct measurement of a pain, the only way to get a knowledge about how a person experience his or her pain, is to interview about this, and i.e. using a pain scale or figures where the child gets the opportunity to mark the pain. In these cases it is very important to understand how the age of the child and the mental development influences the child’s ability of thinking and experiencing pain.

Every child is unique and has it own’s personality, it’s own ressources and it’s own vulnerabilities as well as it’s own handling strategies – exactly as the expression of the cerebral palsy condition shows very different from child to child.

The most important factors which may increase the child’s feeling of pain will be explained. Among these are fear, depression, loss of control, focus on the pain. Also the way the surroundings react and handle the child’s pain influences the way the child experience pain.

In order to meet the needs of the child and to support it in the best possible way, it is important to investigate how the pain influences the individual child. In which situations does the individual child feel that the pain is influencing in a negative way and how does people around the child respond to this? In other words, as well the surroundings as the psycology of the child have an impact on the way the child experiences and is able to cope with the feeling of pain. This means that there are some psycological factors which will be able to affect the feeling of pain both in a positive and a negative direction.

Some aspects with an impact on how intensive the feeling of pain is for the individual child, is the ability of coping and the way the child acts in relation to the pain. It is known that a lack of understanding of the cause of the pain and/or fear or insecurity of the child or the parents related to the pain, can increase the feeling of pain, like when feeling helpless and with negative thoughts. Opposite to that it is known that distracting strategies can cause a considerable pain-killing effect (i.e. reading a story, watching television, talking to a pet animal or drawing), as well as being comforted and getting the feeling that the parents are understanding and supportive.

Focus will be on which exact factors will be able to decrease the feeling of pain (i.e. distraction) as well as complementary treatments will be mentioned (i.e. visualization, hypnotherapy, cognitive therapy, physiotherapy, white noise and acupuncture).

Depending on the age of the child as well as of the cognitive abilities, it may be relevant to present a brief introduction to the parents about visualization and how the child can be supported by this technique – either by providing oneself with a CD containing pain visualization for children, or by visiting a psychologist who can produce a visualization CD for the specific child.

It is of great importance that the child learns to recognize the pain – learn how to listen to the signals from the body and take care of him- or herself. The child must know the consequenses of overloading the body and how this may cause even more pain, and learn how to feel his or her needs and limits and become able to express what is acceptable and what is not.

Suggested readings

IN DANISH

Dørup, Jens: Smerter ved børneleddegigt. http://www.gbf.dk/viden_om/artikler/en_hverdag_med_gigt/smerter_ved_boerneleddegigt/

Frølich, Søren(2011): Kroniske smerter. København: Arnold Busck.

Jensen, Charlotte (2011): Det kronisk syge barn og livet i familien (pp. 115-126). Dansk Psykologisk Forlag. http://www.dpf.dk/Item.aspx?Department=5&Category=23&Item=3412

Thastum, Mikael (2000): Smerteoplevelse og –mestring. Medlemsorientering nr. 94, maj 2000, Gigtramte Børns Forældreforening http://www.gbf.dk/viden_om/artikler/en_hverdag_med_gigt/smerteoplevelse_og_-mestring_/

Zachariae, Bobby (2007): Visualisering for børn I. Afspænding og redskaber til håndtering og lindring af sygdom, smerter og ubehag. (CD+teksthæfte). København: Rosinante.

”Hvid støj” - www.purewhitenoise.com

IN ENGLISH

David Buttler at the Danish Physiotherapist Conference 2009: Manipulating the brain – a live video speak: http://lmp.lynxmedia.dk/Danske_Fysioterapeuter/Fagfestival_2009/Fredag/Manipulating_the_brain/export_popup?serverinfo=1237902823048834381&skin=Fysio/400x225&object=Danske_Fysioterapeuter/Fagfestival_2009/Fredag/Manipulating_the_brain&mode=event&isMac=false

http://www.medicalnewstoday.com/releases/26933.php

http://www.ncbi.nlm.nih.gov/pubmed/19262912

http://web.comhem.se/u68426711/23/Eccleston2002RCTPhysiologicalTherapyChroniCPainMetaAnalysisPainRelief.pdf

http://ukpmc.ac.uk/abstract/MED/8783061

http://ukpmc.ac.uk/abstract/MED/10706352/reload=0;jsessionid=8D50C0BCE190474AC456306ED2949627

Culbert, Timothy & Kajander, Rebecca (2007): Be the Boss of Your Pain. Self-Care for Kids. Free Spirit Publishing Inc.

Zeltzer, Lonnie K. & Schlank, Christina Blackett (2005): Conquering Your Child’s Chronic Pain. A Pediatrician’s Guide for Reclaming a Normal Childhood. HarperCollinsPublishers http://www.paloaltoonline.com/weekly/morgue/2005/2005_05_11.library11.shtml

Self-reported quality of life of 8-12-year-old children with Cerebral Palsy.pdf

Pain in children with cerebral palsy - a cross-sectional multicentre European Study.pdf

http://www.nationalpainfoundation.org/articles/137/disparities-in-pain---children

Activities/Extra Material

RESOURCE CHART

WHAT TO DO, WHEN THE CHILD IS IN PAIN?

Write down, on the figure, which things and activities helps relieving the pain, according to experiences from the child, the parents and the teachers.

Examples:

Being taken serious and feeling understood – talking to an adult – given a help to think otherwise about the pain – changing position (lying down, standing up, walk around, change chair etc.) – taking a hot bath – being with friends – talking to a pet animal – drawing – playing computergames – reading – being told a story – watching television – going for a walk – playing – spending time alone in the childs own room – listening to music - relaxation techniques – breathing techniques – visualization – physical exercises.

Pain Themometer

Jensen, Charlotte (2011): Det kronisk syge barn og livet i familien (pp. 115-126). Dansk Psykologisk Forlag. http://www.dpf.dk/Item.aspx?Department=5&Category=23&Item=3412

Pain figure

Jensen, Charlotte (2011): Det kronisk syge barn og livet i familien (pp. 115-126). Dansk Psykologisk Forlag. http://www.dpf.dk/Item.aspx?Department=5&Category=23&Item=3412

8. Aspects of developing into adulthood, what is special concerning CP and other disabilities when growing into adulthood and getting older

Session Overview:

The session begins by putting into perspective the importance of reaching an acceptance of the situation as being disabled as a basic requirement, if one shall reach a point where it will be possible to live an active life, participating in and becoming an active member of a family life, the local community etc.

The special conditions followed by suffering from a chronic disease, influencing on the physical and biological body as well as on the mental status, will be explained.

The session will end by inviting the participants to discuss how it can be possible to take this knowledge into consideration and from an early beginning think which of the biological and physical strains can be relieved by thinking of compensations in everyday life even before the problems show up.

Learning Outcomes:

The participants will know the importance of acceptance of the disability in order to be able to live an adult life as an active member of society.

The participants will know which implications growing up with a physical disability is threatening the mind and the physical and biological body.

The participants will learn – inspired from a discussion in the group – how these threats can be met before they take over.

Session Contents:

Successful rehabilitation. All development and rehabilitation are based on the recognition of the disabled person that s/he has a problem. If there is no recognition, help will be denied because the problem has been denied.

To grow up and into a life of adulthood with a disability and at the same time retain an individual personality intact is quite a challenge. It involves different steps of awareness and acknowledgement, which all are essential and necessary, to move ahead in the process of learning and accepting to live with cerebral palsy.

One of the most significant steps is to allow for mourning. Both the disabled individual, the family as such and in particular the parents are in a state characterized by grief when it becomes a fact that the diagnosis in question is cerebral palsy. To make life with cerebral palsy as meaningful and comfortable as possible mourning is the first step to take. This process is essential for both parents and child to prepare for the next step aiming at acceptance and recognition of the disability. If this process of self-development is neglected many will be induced to block out the fact of being disabled which again could result in a situation where motivation and focus are so narrowed down to the attempt of being normal that demands and expectations on the disabled child become unrealistically high. This often causes numerous daily defeats and frustrations. According to the research it is of vital importance for both parents and the disabled child to recognize the limitations that exist because of the impairment and this will only be possible if the process of self-development is given necessary attention.

By recognizing and accepting the impairment – its strong sides and also the limitations – it will become possible to live with cerebral palsy and to participate within social interaction and be an active member of the local community.

Medical conditions and ageing

Before the Second World War, only a small number of children with cerebral palsy survived to adulthood and an even smaller number achieve to make it into old age. At that time the standard were equivalent to an evident gap between life expectancy for people with cerebral palsy compared to non disabled people. Nowadays, primarily due to improvements in medical care, development of rehabilitation, and assistive technologies, the majority of children with cerebral palsy live into their adult years and the gap in life expectancy is more or less eliminated. Living this long with a disability often involves an increase in medical and functional problems – some of them beginning at a relatively early age – including the following:

Premature aging.

The majority of individuals with cerebral palsy will experience some form of premature aging by the time they reach their 40s because of the extra stress and strain from the disease. The developmental delays seen as a consequence of cerebral palsy keep some organ systems from reaching their full capacity. Organ systems such as the cardiovascular system (the heart, veins, and arteries) and pulmonary system (lungs) therefore have to work harder and they age prematurely. Research show that the premature aging factor in people with cerebral palsy could range from 1.5 – 5 compared to normal aging.

Depression.

The rate of depression is approx. 25 % higher in people with cerebral palsy. There seems to be no obvious relation to the severity of the disability, but rather the problem roots in how well people with cerebral palsy cope with their disability. The extent of emotional support, how good they are at coping with frustration and stress, and whether or not they have an optimistic outlook about the future all have a significant impact on level of happiness and exclusion of depression.

Pain.

Living with pain often goes unrecognized by professional health care people as many individuals with cerebral palsy may have experienced some degree of pain right from birth and therefore do not comprehend the condition as pain. Others may not be able to describe the extent or location of the feeling of pain. In cases where pain is managed properly, the condition often averts becoming chronic.

Pain, fatigue, and weakness (PFW).

Many adults with cerebral palsy at one time or the other experience what is known as PFW, a combination of pain, fatigue, and weakness due to overuse or misuse of the body because of muscle abnormalities, bone deformities, and arthritis. Fatigue by itself is often a challenge, as individuals with cerebral palsy use three to five times the amount of energy that non disabled people use during daily life to move about.

Additional medical conditions.

Adults with cerebral palsy have higher than normal prevalence of secondary medical conditions, such as hypertension, incontinence, bladder complications and dysphagia. Scoliosis (curvature of the spine) is seen in some cases to progress after puberty, when bones have matured. Also luxation of the hip appears in up to 12- 15 % of the children. People with cerebral palsy overall have a higher incidence of bone fractures.

Adults with cerebral palsy should attend regular visits to their general practitioner to make a point of ongoing evaluation of their medical status. It is important to have physical complaints analyzed to make sure they are not due to an underlying condition. For example, adults with cerebral palsy are likely to experience PFW, but PFW also could result from an undiagnosed medical condition that might be treated.

Today it is a fact that many more individuals with cerebral palsy than seen before outlive their families and caregivers. Consequently the issue of long-term care and support should be taken into account and planned for in due time.

Suggested readings

“The Best Journey to Adult Life” for youth with Disabilities – An evidence-based model and best practice guidelines for the transition to adulthood for youth with disabilities:

http://transitions.canchild.ca/en/OurResearch/resources/BJAmodelandbestpracticeguidelinespdf2009.pdf

Kemp Bryan J., Mosqueda Laura (2004) Aging with a Disability – What the Clinician needs to Know. The Johns Hopkins University Press.

KNOWLEDGE ABOUT CP

GROUP WORK 1

Present your child (student) to the rest of the group, focusing on the functional level.

Notes : Discuss in the group which possibilities you find to increase the implementation of training activities in everyday life.

Notes: Choose one idea as the most important one you will bring home today.

Notes When meeting in plenum again, each member of the group share his/her most important idea with the rest of the group.

KNOWLEDGE ABOUT CP

GROUP WORK 2

Present your child (student) to the rest of the group, focusing on the challenges you have just heard about. Do you recognize the child in what you have just learned about and which of the challenges are the most salient regarding your child?

Notes Discuss in the group which possibilities you find to help and compensate for these challenges in everyday life.

Notes Choose one idea as the most important one you will bring home today.

Notes When meeting in plenum again, each member of the group share his/her most important idea with the rest of the group.