GR Training Booklet

“Development of Supportive Packages for

Parents and Teachers of Children with Cerebral Palsy” (03-18 Age Group)

Training Booklet

Quality of Life

Training Booklet

The training module “Quality of Life” has been produced in the context of the CP-PACK project and in accordance with the Need Analysis Report based on the responses and views of parents and teachers of children with cerebral palsy.

It has been developed for parents with children with cp and covers the following topics:

• • Activities of Daily Life (bathing, sleep, feeding,etc) and how they could be made easier for the parents.

  • Play value for a child and how important playing activities are for all the family members.

  • Ways of playing with a child with cp (3 to 18 years old).

  • The value of a support network to the family.

  • The importance of leisure time for parents of children with cp.

  • The importance of leisure time for the children with cp.

  • The importance of the cooperation between the parents and the therapists, the social services and the teachers.

It is a module that combines both practice and theory, aiming to encourage and inspire parents and to help them improve the quality of their family life. The core module has been designed to operate as a one full-day or two days training course, with content to be covered during 8 hours. The module is divided into three units and includes a 2-hour Activity Play Workshop, demonstrating good practices that will help parents to develop practical skills. In addition to the core training, the module also includes a one hour assessment and evaluation of the training.

Training Methodologies

The content of this module is delivered using a range of training methodologies, such as:

o Audio-visual presentations and lectures

o Large group discussions (in plenary)

o Small group work and discussions

o Demonstration of good practices

o Engaging participants’ creativity

Each methodology has its particular strength and utility in a training setting.

Lectures and presentations are useful for conveying knowledge.

Whole group (plenary) discussions allow the development of a common understanding of certain topics and identify areas where there may be conflict within the group or the community.

 Small group discussions stimulate larger participation of people who are not confident enough to contribute to large group discussions.

Small group work and demonstration of good practices involve participants as actors and allow them to apply information and knowledge gained to their own situation for problem solving.

Plenary and small group exercises engage participants’ creativity, give to participants, who may be less confident in speaking and writing, an opportunity to express themselves and participate fully, as well as producing results that may be more appealing to other community members.

Aim

Parents will learn ways and methods which will be useful to get quality in their family life.

Learning Outcomes

Parents will be expected to:

• • be trained in ways which will make easier the Activities of Daily Life.

  • learn how important is playing with the child with CP and learn ways to make it real. Also how important the participation of the siblings in these activities is.

  • learn how they could have free time for themselves and their partner.

  • understand that the good cooperation with specialists could make their family life better.

SESSION BY SESSION PRESENTATION

UNIT 1 FAMILY LIFE

Session 1 Activities of Daily Life

Session Overview: In this session the Activities of Daily Life will be presented, as well as their classification and their use for children with cp.

Learning Outcomes: The participants will learn how they can help and support their children with cp to feel and be more independent in Activities of Daily Life.

Session Contents:

What does “Activities of Daily Life” mean?

The term Activities of Daily Life is referred to an individual’s performance of self-care daily activities and to the care of the indoor and/or outdoor environment he/she lives. Activities of Daily Life are defined as the things we usually do on a daily basis, such as feeding, bathing, dressing, grooming, working, taking care of our family, taking care of household and having fun in our free time. The classification of Activities of Daily Life is:

1. Personal care

• • Feeding: feeding performance functions, food retention, selection and use of tableware, food or drink carrying in the mouth, facial, hand and cloth cleaning, alternative nutrition.

  • Clothing: putting clothes and shoes sequentially, manner, zipping clothes and shoes, clothing selection based on time and weather, organizing the wardrobes

  • Personal hygiene: it includes the choice and use of products, materials and equipment, personal hygiene, body positioning

  • Oral hygiene: it includes the choice and use of products, materials and equipment for the dental hygiene, brushing, flossing and maintenance of special equipment

  • Personal care: it include hair care, nail care, deodorant use, face and hands cleaning

  • Use the toilet: it includes maintaining proper posture, proper arrangement of clothes during toilet, transportation to and from the toilet, body hygiene, care of special machines

  • Care of personal assistive devices: they include the care and maintenance of aids such as headphones, eyeglasses, contact lenses, etc.

2. Functional communication involves the use of systems to send and receive information, such as computer communication table, warning light systems, alternative communication systems, etc.

3. Movement Functionality includes the movement succession from one location to another, the independent movement, the use of special movement equipment, the use of private and public transportation.

4. Social relationships include interaction with other people and interpersonal relations in order to cover physical and emotional needs.

5. Response to distress includes recognizing a hazard situation, addressing an unexpected risk in order to reduce health problems.

The importance of training in “Activities of Daily Life” for children with cp and their parents

The child with cp has to be trained in activities of daily life and this is very important for himself/herself and for his/her parents. The child is getting more and more independent, feels that he/she is capable to perform many personal activities (p.e. toilette, dressing, etc) and in general feels more confident.

As far as parents concern, they know the exact abilities/skills of their child and as the child is growing older, the responsibility of care is getting lower (depending on child’s abilities).

Activities

Following to the presentation of the main idea-information of the session there will be:

• • A presentation of some assistive devices in a whole group or small groups of parents and discussion with them about their use. Parents needs to be encouraged in the use of the assistive devices and in the practice of Activities of Daily Life

  • A presentation of a video of children with cp in Activities of Daily Life.

  • Answering questions, discussing with parents about their personal experiences and exchanging of views (what they would need, what difficulties they face, what solutions they have found to their difficulties, proposals)

Suggested readings

• • Sifaki M. (1998). Activities of Daily Life. Technological Institution of Athens, Greece.

  • en.wikipedia.org/wiki/Activities_of_daily_living

  • Trombly, C. (1995). Planning Guiding and documenting therapy. In C.

  • Trombly (ed.), Occupational Therapy for physical Dysfunction, 4th ed. Baltimore: Wilkins & Williams.

  • Krigger K W (2006). Cerebral Palsy: An Overview. American Family Physician; Jan 1, 2006; 73, 1; Health Modulepg. 91

Reflective questions

Why is it important to train a child with cp in activities of daily life?

Are the devices for activities of daily life helpful for the parents of a child with cp?

How can a specialist advice parents about the devices for activities of daily life?

Session 2 Play with children with cp and their siblings

Session Overview: This session overview refers to the importance of understanding the multiple uses, benefits and goals of play with children with cerebral palsy in everyday life. The treatment of children with cp shows that the cooperation and the involvement of parents and siblings are required in home handling and in encouraging play. The different limitations in children with cp can be managed and adapted though various strategies, in order to use play as a motivation, as a context to promote or improve some skills and as an interactive experience or an enjoyable activity.

Learning Outcomes: By the end of this session, participants will be able to:

o Acquire a clearer understanding about the various meanings, uses and benefits of play for children with cp.

o Distinguish and contrast the use of play: play as a motivator, as an an enjoyable activity or as a context.

o Choose the adequate play activity according to the limitations of children with cp.

o Understand the role of the adult on fostering, facilitating and enhancing a play activity, including or not including nondisabled siblings.

o Be able to make the right selection of toys, games and play materials.

Session Contents:

Ø Child’s play (lecture – power point)

a) Childhood play and playability.

Playing is a central activity during childhood and as the famous educator Maria Montessori used to say “play is the work of the child». You may have come across a child’s playing and you will be sure he is having a good time. However, there is more to the picture that meets the eye. Parents should realize that interacting and playing with their children offers an ideal opportunity to engage fully with them.

b) Play definitions

According to C.Garvey’s definition play is a term employed in ethology and psychology to describe physical or mental activities normally associated with pleasure and enjoyment. What distinguish play from other forms of human activity are its qualities of spontaneity and self-initiation.

In terms of children and play, we find the following definitions:

To occupy oneself in amusement, sport, or other recreation: children playing with toys.

To behave or converse playfully.

To perform on an instrument: play on an accordion.

To engage in (a game or sport): play football; play monopoly.

To compete against in a game or sport.

To act the part or character of in real life: to play the doctor.

To represent or imitate, as for recreation: to play cowboys and Indians

c) Benefits of play–Play therapy.

We often hear the phrase “child’s play” bandied about when something is deemed easy or unimportant. In reality true child’s play is anything but. Play is the means by which children explore their worlds and make sense of their surroundings, which is what ultimately informs their worldviews and opinions. What may look like frivolous activity to some adults is actually very important research on the child’s behalf. Play is so important to optimal child development that it has been recognized by the United Nations High Commission for Human Rights as a right of every child. In fact, play is essential to development because it contributes to the cognitive, physical, social, and emotional well-being of children and youth. But it also offers an ideal opportunity for parents to engage fully with their children.

The benefits of playing according to their goals and their effects.

- emotional benefits

- developing Cognitive and intellectual skills

- enhances physical development

- improves language development

- learns to develop social skills

Ø Play value according to the age or stages of children’s social, intellectual, and cognitive development and to their needs (lecture – power point)

a) Stages of children’s social, intellectual and cognitive development.

www.childdevelopementinfo.com

b) Different stages of child’s play.

c) Types and categories of child’s play: multiples uses and goals.

d) Assessment of play in the selection of toys, games and how to choose the adequate play activity Types and categories of child’s play: multiples uses and goals?

Ø Disability and play (lecture – power point)

1. The effects of disability on play skills can be managed and adapted to the child’s difficulties and needs.

Disability, handicapping condition, or delay can affect how a child plays, the kinds of play the child engages in, and the child's ability to use play as an avenue to learning and generalizing new skills or concepts.

Because most disabilities can have an impact on more than one area of development, it is important to be aware of individual differences in the development and use of play skills. Careful observation of children's interactions with objects and with people will provide a better picture of how a child's disability affects her/his play.

2. Importance of play for children with cerebral palsy

The disability of your child and its effects can be managed with advices and tips according to his difficulties .Those strategies while playing, can help your children to improve their motor skills or even to practice their coordination or to work their imagination. spending a few time with you. In to the successful treatment of children with cerebral palsy the cooperation of parents in home handling and promoting play is essential as it maintains strong parent-child bonds but reinforces also the relation between the child with cerebral palsy and his siblings.

a) Sensory development.

b) Motor and fine motor skills.

c) Cognitive development.

d) Social development

e) Creative communication.

3. Strategies and tips to support play and engage a special relation with your child.

• • Pair him up with a child chosen for her empathy.

  • Substitute toys and objects as characters instead of having your child physically act things out.

  • Encourage a pretend play style that relies on voices rather than action.

  • Recognize the creativity in your child by having her be the "director."

  • Toys are the tools of play and they can be elaborate and expensive as you desire, but often the best toys are simple household objects or throwaways.

  • Present toys that encourage your child to reach and grasp with the hand that is more difficult to use, but allow the child to use whichever hand he chooses

Activities

Following to the presentation of the main idea-information of the session there will be:

 Presentation of videos of children with cp participating in play activities, in order to get a better understanding about the plays that can be suggested according to the goal of the activity, the space and child’s age.

Whole group discussion with parents

The trainer will discuss with parents issues raised during the presentation and other issues that concern them. The participants could take be seated in a circle, where everyone can see each other. During the discussion, the participants will present the ways they use until now to play with their child with cp. The purpose of this discussion will be to provide solutions to parents’ difficulties and/or to give them guidelines.

Suggested readings:

http://www.caringforcerebralpalsy.com

http://cerebralpalsytoysandplayaids.com

http://palsycerebral.org/paralysie-cerebrale-jouer

http://treatmentofcerebralpalsy.com

Musselwhite, C. (1986). Adaptive play for special needs children: Strategies to enhance communication and learning. San Diego, CA: College-Hill Press

Darbyshire, P. (1980). Play and profoundly handicapped children. Nursing Times, 1538-1543.

Li, A. (1983, December). Play therapy with mentally retarded children. Association for Play Therapy Newsletter, 2(4),

Salomon, M. (1983). Play therapy with the physically handicapped. In C. Schaefer & K. O'Connor (Eds.), Handbook of play therapy. New York: John Wiley & Sons Common Threads Publications Ltd. ISBN 1-904792-13-8

Ginsburg K (.2006) Clinical Report doi:10.1542/peds.2006-2697 American Academy of Pediatrics (AAP) “The importance of play in promoting healthy child. Development and maintaining strong parent –child bonds.”

Reflective questions

Which daily activity could be a new play activity for you and your child?

Which daily activity could be a new play activity for the whole family?

Did this session give your ideas for spending more time with your child?

Do you think that you can enhance a new activity with your child?

Session 3 Good Practices

Session Overview: In this session will be presented alternative ways of indoor and/or outdoor activities to mobilize the children with cp, with or without the participation of parents. There will be also discussed the importance of cooperating with experts in this procedure.

Learning Outcomes:

By the end of this session, participants will be able to:

• • Use alternative indoor and outdoor activities

  • Understand the purpose of these activities

  • Have information about alternative activities

Session Contents:

Ø Which are the alternative activities (lecture – power point)

Children with cp spend most of their day in therapeutic programs, designed to improve their motor and psycho-emotional state. The existence of alternative forms of therapy allows children to participate in new, more activated and more fun activities. Such activities include therapeutic riding, therapeutic swimming and sensory integration. Therapeutic riding allows people with physical difficulties to function not only as recipients of the horse's movement, but also to execute a range of movements that improve their mobility and give them the feeling of joy offered by contact with the horse and the ability to ride it.

Therapeutic swimming offers a combination of movement therapy, physiotherapy, sensory integration and recreation (http://www.halliwick.org.uk/)

Sensory Integration

The senses work together to form a complete picture of who we are physically, where we are and what happens around us. Sensory integration is the primary function of the brain, responsible for producing this composite picture. It is the organization of sensory input.

For most of us, successful sensory integration occurs automatically, involuntarily, without effort. But for some of us this process is inadequate, requiring effort without always a successful result. (www.dikepsy.gr)

Ø Extension of therapeutic goals (lecture – power point)

Therapeutic riding

The benefits of therapeutic riding are psychological, educational and physiological.

Specifically, therapeutic riding:

· improves body control and posture;

· improves walking, balance, co-ordination, and joint mobility;

· improves visual-physical co-ordination;

· promotes natural movement norms;

· normalizes muscle tone; and

· improves the respiratory system.

At the same time, therapeutic riding also:

· increases self-confidence, self-discipline and self-control;

· enhances sociability and co-operation;

· cultivates affection for animals and the natural environment

· helps in focusing attention, concentration and perception.

Therapeutic swimming

In the water the muscle system is activated very intensively, helping people with cp to execute movements that they would not be able to perform outside the water. The therapeutic effect of water offers sensory-physical experiences and movement to people who cannot walk. We also know that disabled people respond better to alternative activities, outside the restricted bounds of the therapy halls. We expect that therapeutic swimming will help children and teenagers with cp to:

· improve their reflexes;

· achieve better control of movement, balance and orientation;

· improve their respiratory function;

· acquire more natural posture and movement;

· relax, thus improving control of involuntary movement

Sensory integration

Sensory experiences include touch, movement, sensation of the body, visual perception, auditory perception and sense of gravity.Within the framework of the sensory integration, typical daily activities for children are used and developed. The movement of the child plays important role in the selection of activities. Most children tend to seek sensory experiences. This search and engagement enables a child to become more mature and organized.

Ø Combination: therapy and recreation (lecture – power point)

Activities

Following to the presentation of the main idea-information of the session there will be a presentation of video with alternative activities for children with cp. Also, at the end of this session a booklet with information about alternatives activities will be given to the participants.

Suggested readings:

http://www.halliwick.org.uk/

http://www.trag.gr/default_en.htm

Reflective questions

o Which alternative activity would be more helpful for your child with cp and why?

Session 4 Activity Play Workshop

Session Overview: This session is a practical module for children with cp and their parents. Parents, who are divided into three groups depending on their children’s age, will be challenged to play as regular players, playmates or to direct play.

Learning Outcomes: By the end of this session, participants will be able to:

• • Design ways of playing with children with cp

  • Orientate play, towards specific or multiple targets (e.g. recreation)

  • Prepare the children for play and physically assist them in the best possible way.

  • Use activities of daily life to play with children with cp.

Session Contents:

Ø Introduction (lecture)

The participants will be introduced to the main idea of this session and prepared to use the theoretical information they have received so far from the training into practice.

Ø Practice

The participants will be divided into three groups:

I. Group for parents with children 3-7 years old

II. Group for parents with children 8-14 years old

III. Group for parents with children 15-18 years old

Activities

A week before the training, the participants have to complete a questionnaire, in order to provide the training team with information about their children with cp. This information is crucial for the design of a successful Activity Play Workshop that will meet the needs of the participants (for a suggestion see at the Supporting Materials).

Parents will be divided into three groups and perform different activities depending on their children’s age.

I. Group for parents with children 3-7 years old

This group will play in pairs or small group activities, through sensory stimulation, somatosensory and body contact.

II. Group for parents with children 8-14 years old

In this group children with cp, their parents and siblings will have to cooperate to create a story plot and puppets characters from the story, using parts of household equipment.

III. Group for parents with children 15-18 years old

In this group, participants will be taught how to adapt a specific paralympic sport (Boccia) and other sports for recreation.

At the end of the activity play workshop there will be a discussion – evaluation of the workshop.

UNIT 2 SOCIAL LIFE

Session 1 Support Network

Session Overview: In this session a reference will be made to the levels a support network operates from, the benefits a support network offers to the individual or the family and the ways the individual or the family can use a support network in order to benefit as much as possible from it.

Learning Outcomes:

• • By the end of this session participants will be able to know about:

  • The levels of a support network

  • What a support network can provide to the individual and / or the family

  • The use and the usefulness of a support network

Session Contents:

The main idea-information

Ø Support Network(presentation)

A support network operates on many levels from families up to the level of the state, and plays a critical role in determining the way individuals are dealing with or solving their problems and the degree to which individuals succeed in achieving their goals.

1) Informal and formal ways that support can be provided to the individual/family

a) Informal Supportive Resources - Family members, et al.

When people are asked to indicate who they turn to in times of crisis and emotional distress, they typically say family members and friends who they consider “natural helpers”. The network of relatives and friends with whom they have day-to-day contact is an important part of their lives - is a pattern of life of many ordinary families.

Family members, friends, peers, neighbours and others can provide various forms of support, aid and assistance and can be a constant informal supportive resource. Support networks formed by these informal helpers are thought to have a major impact on the life of a person as they can assist them in sustaining or improving difficult situations, in finding solutions to their problems, in progressing in their life, etc.

b) Formal and/or Informal Support - Community Services/Resources

Support at another level can be provided by the services - formal or informal services - that exist in the community one lives. The notion of a community implies the existence of a network of reciprocal social relationships which among other things ensures mutual aid and gives those who experience it a sense of ‘well-being’. The formal or informal services/resources that exist in the community can offer formal or informal support to the individual or the family.

Formal support can be provided, for example, by:

- a Social Services Office or a Family Assistance Association or a Children’s Welfare Center, etc.

Informal support again can be provided by:

- an interests group at the Community Center we participate in (for sharing common situations, problems, etc. or for hobbies, etc.)

- or a play/activity group for children or an adventure playground (some of them can be run by parents)

- or a voluntary group we participate at a Charity Center

- or a help group of people to act more effectively together and to press for improvements, for better conditions, etc.

- or the Church, etc., etc.

Both, forms of support, are important and by using all the relevant resources in the community the individual/family can benefit a great deal.

c) Formal Support - State Services/Resources

The support provided by the State is formal. The State-Central Government has a responsibility to operate specialized services, public or private, to make laws, to issue regulations to relieve difficulties and problems people face, etc. People can use these services, can make use of the laws and can ask for the regulations that apply to their case in order to be able to relieve their difficulties or solve their problems. As the provision of the State specialized services depends on some bureaucratic and complex procedures and more time is usually required in order for the needs of people to be met. Nevertheless, the State public or private services are operating in order to meet the individual’s needs and to improve the people’s conditions of living.

2) What a Support Network can offer to the Individual/Family

Individuals tend to have social contacts that can support them in one way or another. These contacts offer a natural helping process and they form the individual’s support network. Studies have shown that a support network offers to the individual a sense of belonging that is extremely important for emotional health and well-being and that happiness tends to be correlated in support networks.

A support network can provide to the individual:

- Human Interaction

- Participation and Togetherness

- Information, Increase Knowledge and Experience

- Bridge/Reach

- Status and Influence

3) Ways of using Support Networks

It is better for individuals to have connections to a variety of networks for support, like family, friends, work, activity groups, community formal or informal resources etc., rather than many connections within a single network, like their family or their friends.

Again, we may be happy having only one person supporting us throughout difficult times. But we may wear that person out or again feel unsupported if/whenever that person is unavailable. It would be more helpful if we could have at least a few people to depend on as we can also draw different benefits from different types of people and they can also introduce us to more people we could benefit from. For example, having 1) a knowledgeable friend to gain information and insights from, 2) an empathic friend to be a good listener during tough times and 3) an outgoing friend to party with, provides a better blend of support than any one of these people alone could give.

Also it is not necessary to formalize our support network with regular meetings. A coffee break with a friend at work, a quick chat with a neighbour, a phone call to a member of our family, even a visit to church are all ways that can offer us support.

The extent of our informal support network is equally important. The individual/family needs not only the smaller, main, closed network but also the more open network with loose connections (weak ties) to its members. In other words, it is very helpful and supportive to have a group of friends, et al. we can turn to or do things with, share common interests, experiences or problems, etc. However, it would also be helpful if we can have an open network too, i.e. a group of individuals with connections to other social worlds. In this way, it is more likely to be able to have access to a wider range of information, or to be introduced to new ideas and opportunities, etc. Also as a member of this open network, to be able to exercise some influence in the decision making on issues of disability, etc.

4) Benefits of a Support Network to the Individual/Family

Numerous studies have demonstrated that having a network of supportive relationships contributes to psychological well-being. Having close friends and family on whom we can count has great benefits for our health. A strong support network can help us through the stress of tough times, whether we have had a bad day at work or a year filled with loss or chronic illness.

When we have a support network, we benefit in the following ways:

• • Sense of belonging: Spending time with people helps ward off loneliness.

  • Increased sense of self-worth: Having people who call you a friend reinforces the idea that you are a good person to be around.

  • Feeling of security: Your support network gives you access to information, advice, guidance and other types of assistance should you need them. Its comforting to know that you have people you can turn to in time of need.

5) The influence a support network can have in improving conditions for people with cp and their families.

Activities

Ø Group exercise

The trainer will conduct an open discussion with the participants on issues concerning the supporting network of families with children with cp. Participants and trainer could sit in a circle so they can have visual contact. The reflective questions that follow are part of the themes to be developed.

Reflective Questions:

- In what ways the support network you have helped you in coping with a child with cp?

- Are you satisfied with the support network you have and why?

- Do you feel that you are supported by your immediate and/or the wider environment?

- Who are the people that support you?

- What do you consider as your support network?

- Do you think you need more support and what would this be?

- How would you go about finding more support?

- What is your experience of your support network?

- Do you feel that sharing your support network experiences can help other parents of children with cp?

- Do you feel the Session helped you and in what way?

Suggested Reading:

- Stephen Murgatroyd and Ray Woolfe: “Coping with Crisis” Harper and Row Publishers, London,1982.

- Robert M. Moroney: “The Family and the State” Longman Group Limited, London, 1976.

- Mary A. Slater and Lynn Wikler: “Normalized” Family Resources for Families with a Developmentally Disabled Child, National Association of Social Workers, 1986.

Session 2 Social Activities for children with cp and their families

Session Overview: In this session the importance of everyday social activities for children with cp and the conditions which are helpful in these activities will be indicated.

Learning Outcomes: By the end of this session participants will be able to:

Understand how important it is for the family to participate in social activities

Know who specialists can help and support their family

Session Contents:

Ø Everyday family social activities (lecture – power point)

Family should participate in everyday social activities together with the child with cp. Social activities means:

a) development of social relations

- visiting relatives and friends of the family during the weekend, the holidays, etc

- visiting classmates of children with cp

- organizing celebrations and events in the family home

- having joint holiday with friends

b) contact with the community to meet the needs of the family

- participation of children with cp in family activities such as shopping, going to supermarket, etc.

- involvement of families and children in local artistic, sport or cultural associations and/or activities.

Ø The meaning of social activities (lecture- power point)

The participation of a child with cp in family social activities has significant benefits in all factors of development.

Through social interaction the children are mentally and socially strengthened. Alongside, the social activities can have educational mean also (i.e. learning about the use of money).

Finally, the participation of all family members in social activities enhances the family dynamics and significantly reduces the development of affective disorders in family members.

Ø Support and information from the specialists (lecture – power point)

The systematic cooperation between the parents and the specialists (physiotherapist – occupational therapist – speech therapist-social worker) acts as a catalyst and enhances the participation of the child into family social activities, as they can provide solutions to practical issues (i.e. the purchase of a suitable wheelchair makes the child more functional and independent). Moreover, the therapists can design the educational content of a family social activity (i.e. learning about money management).

Activities

The trainer will present the session’s subjects, using power point presentations. A discussion will follow in order to offer the participants the opportunity to discuss and get answers to all their relevant answers.

Reflective questions

o Which is the favorite social activity for your child with cp and why?

o Which are the advantages of participation in social activities?

Session 3 Leisure time for parents

Session Overview:

This session will be referred to the management of leisure time for parents of children with cp. There will be proposed methods and suggestions for creative use of leisure time, as well as presentation of programs for facilitation of parents. Part of this chapter is the Group Discussion / Parents Counseling.

Learning Outcomes: By the end of this session, participants will be able to:

· Know the value and the importance of leisure time for themselves, for them as partners and for them as parents of children with CP.

· Overcome the difficulties that prevent them from dedicating time to themselves.

· Learn methods of leisure time management.

· Learn about the wider social network and services that can mobilize and facilitate parents to have leisure time.

Session Contents:

Ø The importance and the value of leisure time for people (lecture – power point)

Ø The importance and the value of leisure time for parents of children with cp and the risk for the entire family dynamic to be manipulated and influenced, when the parent does not spend time for herself/himself and his/her partner. (lecture – power point)

We all know, the presence of a child with cp alters the family dynamics and many parents remain in social isolation. As the family focuses on the needs of the child, the relations between family members neglected. Also, parents neglect themselves. (My brother and me, Cerebral Palsy Greece-Research Dept., Athens, 2004).

Ø Leisure time management – Methods and Solutions for mobilization. (lecture – power point)

Learn about the wider social network and services of organisations (public-private entities) that mobilize and facilitate parents to have leisure time.

Activities

During the presentation of the trainers there will be demonstration of good practices, videos, photos or presentation of programs which promote or support the leisure time for parents of children with cp.

Then there will be:

Ø Group Discussion / Parents Counseling

Parents will be divided into two groups with one trainer in each group and have a group discussion-parents counseling for 20 minutes.

As an activity for discussion and counselling, the trainers will present the following subjects through standard expressions/statements.

a. Many parents often experience feelings of distress, anxiety stress, etc. and fail to experience the satisfactions that the family life can offer.

b. Pursuing a more restful work in the upbringing and care of children with cp seems to be impossible, but with methodical and organized effort is feasible.

c. Some parents fear and refuse to trust their children’ care to people from their supporting network or to assistants

d. Counselling, information, practical assistance and training on free time management to all members of a family with a child with cp. Participation to parents groups and/or parents’ associations/federations.

e. Participation to activities and programs of the broader social network

The trainers will empower parents to present their own ideas, suggestions for leisure activities (eg. through that group can eventually become friendships between parents and children and possibly parents could trust their child to each other, so there would be benefits for parents (leisure time), for children (socialization and friends) as well as for families (groups and each other).

Session 4 Recreation and leisure time for children with cp

Session Overview: In this session will be mentioned activities of leisure time for children with CP will be mentioned. Ways with which parents can offer useful and fun activities for their children. Services which are helpful in this process.

Learning Outcomes: By the end of the training parents will be able to:

o Understand the importance of leisure time for a child with cp

o Know where they can get information about good use of their child’s leisure time.

o Have general criteria for the selection of companion/assistants on payroll for their children.

Session Contents:

Ø The importance of leisure time for the child with Cerebral Palsy.

Leisure time and its proper use through play and recreational activities help the child with cp to develop social relationships, to improve his/her mental and emotional health and to improve quality of his/her life.

The involvement of children with cp in recreational programs is equally important with his/her involvement in therapeutic and educational programs and improves his/her social development as a healthy member of the society.

Ø Activities in which children with Cerebral Palsy can participate during their leisure time

The motor-sensory difficulties of children with cp often presented as the cause for which most of their leisure time is been spent watching television or movies, listening music or watching the activities of other family members. According to recent surveys (Mactavish & Scheien, 2000), the most common and popular forms of family entertainment reflect five general categories of activities:

1) Passive activities (i.e watching television or movie).

2) play (i.e. board games).

3) physical activity (i.e swimming).

4) Social activities (i.e. friendly and family visits).

5) Special occasion (i.e. participation in a party).

The differences, which observed in popularity and frequency of these activities, depends on the participation of the family, its socio-economic status and the nature of disability. (Dr. Feluca Vasiliki, People with motor disabilities and their free time, article, 1grpe.eyv.sch.gr/ypost/ypost1l7.doc)

Indoor and outdoor activities for children with cp and his/her family

- Indoors activities

§ Use of pc with special adjustments can function as an entertainment tool.

§ Play family games: the most significant benefit to a child with cp is the strong sense of "belonging" to the family group, which is enhanced by communication and laughter during a family game. At the same time skills like hand-eye coordination and manual dexterity is been reinforced through play

§ Play games using ordinary household objects: by using household objects in various ways the child with cp will enhance his/her physical, emotional and social image.

§ Television and its correct use: watching educational and recreational programs (i.e. watching a football game with his father)

§ Other activities like drawing, etc.

- outdoors activities (lecture – power point)

Camping programs: the child with cp becomes more independent and autonomous while spending time away from his family. During group activities and living the child with cp enhances his confidence and self-image, makes new friends, relationships, is being trained how to cope in conflicts with friends as well as how to express positive emotions and attitude in order to build friendships.

Sports activities (i.e. riding, swimming, playing boccia, etc).

Recreational outings with family, friends, assistants

Ø Family cooperation with Companion /Assistants on payroll ( presentation of the programs)

The involvement of other persons of the wider society in the life of a child with cp is being estimated as a relief both for the child with cp as he will participate in social activities without his parents, as well as for his parents, who can have free time for themselves.

Various social services have developed programs for people with cp which offer the opportunity to the family to cooperate with an assistant / companion. The cooperation of the family should be in a systematic basis, with a certain pre-agreed fee, specifically focusing in contact with the community, development of socialization and entertainment.

Ø General criteria for the selection of Companions / Assistants on payroll (lecture – power point)

The choice of an appropriate assistant / companion for the child with cp must be made with great care by the family, taking into consideration the following criteria: age, language, gender, experience in disability issues, personality. The family could contact social services which develop similar services as well as disability associations.

Activities

Following to the presentation of the main idea-information of the session there will be a presentation of video where a parent and a child with cp who cooperate with an assistant as well as an assistant present their opinion about recreation and leisure time for children with cp. At the end of the session a booklet will be given to participants including information about leisure time’s good use.

Suggested readings

Dr. Feluca Vasiliki, People with motor disabilities and their free time, article, 1grpe.eyv.sch.gr/ypost/ypost1l7.doc

Reflective questions

o Have you ever cooperated with a companion/assistant for your child?

o In which activities could your child participate with a companion/assistant?

Unit 3: Cooperation with interdisciplinary team

Sessions Overview: In this session we will access the interdisciplinary team composition and the way it functions. We will concentrate on ways with which the family can communicate and cooperate with the interdisciplinary team, in order to achieve the best results for the child with cp and the family life.

Learning Outcomes: By the end of this session participants will be able to:

o Recognize the issues that have to be addressed by the interdisciplinary team

o Take full advantage of the rehabilitation team’s services.

Session Contents:

Ø Presentation of the interdisciplinary rehabilitation team.

An appropriate and efficient rehabilitation team is the most important tool of rehabilitation for children and adults with cp.

Rehabilitation physicians are trained in organizing and coordinating the Rehabilitation Team, an interdisciplinary team which is the main carrier of rehabilitation services. Its members are the physical medicine and rehabilitation specialist (PMR specialist), the paediatric-neurologist, paediatric-orthopaedic surgeon, the physiotherapists, occupational therapists, speech pathologists, psychologists and other therapists (music therapists, drama therapists, sensory therapists etc) teachers, social workers and specialized nursing staff. Auxiliary members who could work with the Rehabilitation Team on a case basis and depending on needs include other medical or non-medical specialists, such as developmental medicine specialists, paediatric psychiatrists, ENT doctors, ophthalmologists, gastroenterologists, neurosurgeons, dentists, orthotists, biomechanical engineers, experts in alternative communication technologies etc. The Rehabilitation Team would meet regularly with its regular members to assess the children, their progress, their particular needs, any adjustments required to the rehabilitation program and to review the short and long term goals.

The rehabilitation program includes all therapeutical techniques and methods, depending on the needs of each individual, and is expanded with medical interventions which may be required at various stages of follow-up (botulinum toxin injections, serial casting, muscles or tendon lengthening, etc). The rehabilitation program is tailored for each child depending on their medical problems, abilities and needs. Selection of a specific method is very much linked to the clinical picture of the child and on many occasions a combination of methods may be chosen for optimum results.

Ø Presentation of ways of interaction between the team and the family.

The children and their families must be as involved as possible in this endeavour, they must be aware of the propositions made and goals set by the experts, agree and participate in what needs to be done and also express their own expectations, perceptions and attitudes, guiding the rehabilitation goal-setting. Working with the family is fundamental. In a specialized CP Center, parents should be able to reach the members of the team at a short notice and notify them about medical, educational, psychological, behavioral and family issues concerning their child with cp. The team in its regular or irregular meetings should address the matters outlined by the parents and adjust the rehabilitation process accordingly. Parents should be instructed by the rehabilitation team on how to use the rehabilitation services provided and should be informed regularly on their child’s rehabilitation process.

A smooth transition from the paediatric to adult rehabilitation services is of great importance to children with cp and to their families. The rehabilitation specialist and team should ensure the proper follow-up and continuation of an individualized rehabilitation care into adulthood.

Activities

Following to the presentation of the main idea-information of the session there will be a discussion between the participants.

Suggested readings

1. White Book on Physical and Rehabilitation Medicine in Europe

Copyright© 2006 by Section of Physical and Rehabilitation Medicine and European Board of Physical and Rehabilitation Medicine, Union Européenne des Médecins Spécialistes (UEMS) and Académie Européenne de Médecine de Réadaptation.

2. UN Standard Rules to provide persons with disability full participation and equality. New York: United Nations; 1994.

3. Rehabilitation and integration of people with disabilities: policy and integration. Strasbourg: Council of Europe Publishing; 2003. 7th ed. p. 369

4. L. Gagnard et M. Le Metayer, Rééducation des Infirmes Moteurs Cérébraux, Expansion Scientifique Française, 2000

Reflective Questions

1. Interaction of the rehabilitation team and community services – community-based rehabilitation.

2. Transition from paediatric to adult rehabilitation services.