HYDROCEPHALUS & CHILD DEVELOPMENT HYDROCEPHALUS & LEARNING THROUGH PLAY EDUCATION - THE PRE-SCHOOL YEARS FIND THE RIGHT CHILDCARE SERVICE FOR YOUR CHILD EDUCATION - THE PRIMARY & SECONDARY SCHOOL YEARS LEARNING & TEACHING FOR TEACHERS & PARENTS TEACHING STRATEGIES TO IMPROVE CLASSROOM PERFORMANCE PRIMARY & SECONDARY EDUCATIONAL SUPPORTS & PROVISIONS CATHERISATION IN SCHOOLS SHUNT MALFUNCTIONS POSTER FOR SCHOOLS FURTHER & THIRD LEVEL EDUCATION HYDROCEPHALUS & COLLEGE

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As specific cases may vary from the general information presented here, SBHI advises readers to consult a qualified educational advisor, occupational therapist or other professional on an individual basis.

HYDROCEPHALUS & CHILD DEVELOPMENT

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There can be difficulties associated with Hydrocephalus such as problems with concentration, reasoning and short-term memory. Hydrocephalus can also result in subtle effects such as problems with co-ordination, motivation and organisational skills. Physical effects such as visual problems, or early puberty in children, may also occur. These difficulties may affect child development. However, many of these effects can be overcome with teaching strategies or treatment where relevant.

Sensitivity to Noise

Many people with Hydrocephalus are very sensitive to sudden high-pitched sounds or very loud noises, e.g. amplification. Young children react by crying and may become very distressed although many become less sensitive over time. Some adults report feeling sensations in the shunt and others have an echoing feeling in the head, others feel panic, nausea and may burst into tears.

Seizures

Approximately one third of people with Hydrocephalus have seizures at some time in their lives. A rise in intra cranial pressure due to shunt blockage may trigger an Epileptic fit. Fits sometimes occur after shunt revision. It is often just an isolated incident, but some people go on to develop Epilepsy. Epilepsy is usually treated with anti-convulsing drugs and is the same for people with or without Hydrocephalus.

Premature Puberty

Some children with Hydrocephalus may develop early puberty. It is seen more often in girls than in boys. Preparation of the child for the onset of periods and sexual development needs to be handled sensitively.

Eye Problems

Eye problems may be the first sign of raised pressure in the brain or shunt blockage, so it is important to monitor the eyes. Visual assessments and ocular assessments, which monitor the eye movements and examine the back of the eye, are recommended.

There is a high incidence of eye problems in patients with Hydrocephalus, such as strabismus (squint), nystagmus (fine wobble of the eyes), papilloedema, (swelling of the optic disk), optic atrophy and blindness. All Hydrocephalic children are at risk of losing vision and developing a squint. Squints can cause problems with judging distances, speed of approaching vehicles etc.

Language

In some children with Hydrocephalus their ability to use language is often ahead of their ability to understand it. Their vocabulary can be good because they are able to imitate what they hear. If they do not understand fully what is said their response may be inappropriate. A child with a language problem will pick out words they understand and guess the rest or give a stock answer.

Helping the child

• Talk in short phrases about things the child can see and understand.
• Use pictures and books and talk about them.

Use photos to remind child of things they have done or places they have been.

Speech

If the child has a problem with forming sounds he/she may need to be referred to a Speech Therapist.

Helping the child

• Don't draw too much attention to speech defects.
• Give the child plenty of opportunity to hear sounds repeated naturally.

Encourage child to use more words, even if the sounds aren't clear.

Weak Upper Limb Control and Hand Function

Problems with upper limb control and hand skills are common in people with Spina Bifida and Hydrocephalus. The majority have weak muscle power in their upper limbs. It is important to encourage the use of both hands, especially if one hand is weaker than the other. Loss of sensation in the hands results in an inability to discriminate between differences in water temperature or the temperature of objects such as radiators, kettles etc. Problems with fine finger movements are shown in everyday tasks such as fastening buttons, threading needles, catching balls, screwing lids on jars and using scissors, as well as handwriting. For many everyday tasks and handwriting, it is necessary to stabilise trunks and shoulders and maintain a good sitting position. The non-dominant hand should be used as a support e.g. to hold the copybook as the child uses the dominant hand to write.

Helping the child

• Regular exercise such as adapted gymnastics, PE or swimming helps the development of gross movement and hand function.
• Children should take part in PE at school.
• Ask the child's Physiotherapist or Occupational Therapist to devise a programme and liaise with the PE teacher.
• Correct seating and table height are important so that both hands may be used (get seating advice).
• Simple exercises improve finger strength, especially thumb and index finger. Span grip (use of all fingers) can be improved.
• Provide plenty of chubby crayons, paper etc. for drawing.

Encourage craft work to improve hand skills

Visual Perception

Children with Hydrocephalus often have problems with visual perception. Although they recognise objects, they find it difficult to understand their position and relationships. A squint or other eye problems can exacerbate the problem. Some experience loss of depth perception or have difficulty in judging distance or speed. There may be a difficulty with scanning visual images, with consequences for reading, writing and drawing.

Difficulty in discriminating between different shapes has implications for learning to read and write, also problems with shape, size, direction, volume and position can cause difficulties with maths and practical tasks. Figure ground discrimination i.e. identifying an object from its background, may show up in problems with crossing a road, maps, diagrams and artwork in school.

Visual perception difficulties also means that judging slopes, height of kerb, width of doors or space in a room may prove problematic. It also affects placing objects accurately i.e. a glass left near the edge of a table and even feeding - difficulty in getting spoon or cup accurately to the mouth. Dressing and undressing e.g. getting clothes on inside out, upside down etc may be difficult too. Sometimes people with Hydrocephalus are not aware of signals given by facial expressions in others.

Perceptual difficulties are not the only problems associated with Hydrocephalus. Some people with Hydrocephalus may have problems with decision-making, logical thinking, organisational problems, and inability to follow verbal instructions, short-term memory difficulties and passive behaviour. All of these have major implications for adult life.

Spatial Awareness

Spatial awareness is the ability to understand the surrounding space and judge distance, height, width, size, volume. Problems with spatial and visual perception are inter-related. It can affect the way people move about, e.g. a wheelchair user may bump into tables, graze doorways or clip people's heels. Fear of tilting a wheelchair backward to climb a kerb or fear of the drop may also be apparent. People with Hydrocephalus may have a fear of being left in a room alone, of venturing outside, or of long corridors. Manual tasks might be carried out poorly e.g. matching buttons to buttonholes, getting an arm into a sleeve, laying a table, making a bed. Their handwriting might also be quite poor and illegible - letters uneven or poorly spaced, mixture of upper and lower case, due to visual perception dysfunction.

Helping the child

• As visual and spatial perceptions are closely linked, approaches to improving them over-lap. Perception improves with experience and specific teaching. Children with Hydrocephalus need extra help. The child needs the opportunity to explore the environment and handle objects to develop skills.
• Devise a routine for the child to work and explain each step.
• Allow plenty of time to practice tasks e.g. washing, dressing, learning to lay table.
• Provide a variety of manipulative toys e.g. Lego.
• Play games with the child, using balls, bean bags etc.
• In teaching handwriting, encourage the child to observe space, position, height, size and direction of letters.
• Drama and role play are important tools for teaching non verbal communication, such as facial expressions, gestures, appearance, posture and touch, as well as appropriate behaviour in different situations.
• Most important - praise and encourage.
• An Occupational Therapist can assess the child, work out individual programmes and advise about suitable toys, games etc.
• Encourage your child to make simple choices from an early age.
• Children can be taught the logical consequences of actions through ordinary life situations and daily living skills.
• A systematic method of teaching can improve organisational skills and short-term memory.
• Carrying out activities in a sequence of steps helps memory and the ability to follow verbal instructions accurately.

It must be stressed that the effects of Hydrocephalus vary from one individual to another and some people will have very few, if any, problems.

 

HYDROCEPHALUS & LEARNING THROUGH PLAY

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When choosing toys and games for children with Hydrocephalus or Spina Bifida, it is important to consider not only what will provide enjoyment, but whether the toy will also help all round development.

There are aspects of play with toys or games which can be used positively for specific learning: to develop concentration; to emphasise sequencing (putting events or thought processes in step-by-step logical order); memory training; perception (size and shape); manipulation (the use of hand and fingers) and co-ordination (especially hand/eye co-ordination). Some of these are the specific learning difficulties that have now been highlighted as problems associated with Hydrocephalus.

There are many good pre-school toys and games on the market which cover the development of such skills and could help in the early years.

It must be stressed, that to gain the maximum play and learning value from these toys and games, adult supervision and guidance, reinforced by talking to the child about what he/she is doing while playing, will help the child with concentration and meaningful play.

All areas of play and development overlap, especially with a young child, where movement, hearing, seeing and thinking are all closely linked and vitally dependent on each other. Bearing this in mind, although the following toys and games have been grouped for specific learning skills, there will be other benefits:

• Mobiles encourage eye focus and movement, leading to reaching out.
• Baby gym encourages eye focus and reaching out and hand/eye co-ordination, as well as being a reward toy.
• Pop-up toys (progressing to hammer balls) encourage hand/eye co-ordination.
  Posting boxes: involve recognition and matching of shapes. Hand and finger control are required to post shapes.
• Picture dominoes and lottos require matching of shapes, hand/finger and direction activity. Help in learning to take ‘turns’.
• Finger paints and puppets encourage hand and finger play.
• Play Doh, modelling materials develop the feeling of different textures.
• Building and construction kits are excellent for hand and finger training as well as for learning the position of objects in space and turning 2D pictures into 3D objects. These will include: Lego, stickle bricks, Duplo, Popoids, Kinex, Meccano.

NB Toys containing magnets are not recommended for children with programmable (adjustable) shunts.

The next stage may be mosaics, peg boards, picture templates, stencil sets, Etcha sketch, Magna doodle, paint by numbers and board games. These help thought processes, sequencing, logic, memory, pre-reading, writing and number work.

Computerised games eg hand-held games and games consoles, will help with dexterity and hand/eye co-ordination. It is very easy to leave a child to play with these games but a computer cannot take the place of a parent’s involvement and time with Game Boys etc should be limited.

To help the child’s gross motor skills encourage hopping, skipping, balancing, bouncing (eg Space Hopper, trampoline), running and jumping.
Children will also enjoy using scooters, ride-on toys and bicycles. The child with Hydrocephalus may need stabilisers on his/her bike well after his/her peer group have dispensed with theirs.

Imaginative play should be encouraged, although it does not always come easily to children with Hydrocephalus. However, most will enjoy using prams, toy kitchens, toy cars and garages, dolls, etc. It is amazing how easy it is to construct a ‘house’ or ‘tent’ using two chairs and a sheet!

Toys do not need to be expensive - explore the charity shops and look in your cupboards - pots and pans, plastic colanders, empty plastic bottles (fill with rice or lentils to make ‘music’), wooden spoons, sheets and towels will give hours of play.  Imagination costs nothing!

 

EDUCATION – The Pre-School Years

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Most children with Spina Bifida and/or Hydrocephalus will qualify for early intervention services. These services are available for infants and toddlers ages birth to five years old. They look at five areas of your children's development: physical development; cognitive development; communication; social or emotional development; and adaptive development. If your child is having problems in any of these areas, he or she may receive services designed to help them reach their full potential.

Pre-school children do not have a specific right to education. However, they are entitled to certain health services which are related to education. The Health Service Executive is responsible for providing psychological services and speech and language therapy services for pre-school children with disabilities who are assessed as needing these services. Assessments of children under the age of 5 are carried out under the assessment of need provisions of the Disability Act 2005.

Support services are provided and which service you are referred to is dependent on which facilities are available in your county.  Usually services will fall into one of the following providers:

Early Intervention Team

The Early Intervention Team is set up through the HSE and is a support service for young children aged 0-6 with childhood development delay and disabilities.  The Early Intervention Team work in partnership with parents to provide a service that meets the needs of your child.

The team will screen, assess and identify the needs of your child, together with parents and develop a plan of action for providing services.  Services will be provided based on available resources.

Referrals can be made through your Paediatrician, GP’s, Publix Health Nurse, SBHI Family Support Workers or parents can also contact the Early Intervention Team directly.  Contact your local HSE to see if there is an Early Intervention Team in your county.  For further information visit www.hse.ie

Enable Ireland

Enable Ireland provides free services to over 3,700 children with disabilities and their families from 15 locations and in local communities countrywide.

Service provisions in Enable Ireland vary from county to county but are usually serviced by a team which includes: physiotherapy, occupational therapy, speech and language therapy, social work, clinical psychology, pediatrician, early education and child care.   More information on services in specific areas by visiting www.enableireland.ie

Enable Ireland adopts an interdisciplinary team approach to working with children with a physical disability. Individual Family Service Plans, where both team and family work in partnership to set goals and make decisions is an integral part of the service provision. The team currently consists of Occupation Therapist, Physiotherapist, Speech and Language Therapist, Social Worker and Administration.

Primary, Community and Continuing Care (PCCC)

Children with disabilities are entitled to avail of the range of community care services. In many cases, they have priority in access to the services. The relevant community care services are:

• Public Health Nurses
• Home Helps
• Psychological Services
• Speech and Language Therapy
• Occupational Therapy
• Social Work Services
• Physiotherapy

This service is provided by the HSE in your local community.  For further information visit www.hse.ie

Central Remedial Clinic (CRC)

The Central Remedial Clinic (CRC) provides a range of specialised services for children and adults with physical disabilities. Its facilities and services are available to people from all over Ireland.

We specialise in the assessment, diagnosis and treatment of children and adults with a wide range of physical conditions. Services include:

• Physiotherapy
• Occupational Therapy
• Seating and Mobility
• Gait Analysis at the Gait Lab
• Speech and Language Therapy
• Nutrition and Dietetics
• Nursing
• Educational Technology
• Social Work
• Psychology

For further information on services in your community visit www.crc.ie

Under 5’s Assessment of Need

An independent assessment of need is an assessment of the full range of your child's needs associated with their disability. When the assessment is complete, a HSE Liaison Officer will prepare a service statement for you. The service statement will say what services and supports will be provided to your child and will be prepared within 1 month of the assessment being completed. You will receive your child's assessment report and service statement at the same time. For further details click here

What is a Multidisciplinary Team?

A Multidisciplinary Team is a group of professionals from diverse disciplines who work together, usually on an ongoing basis. Professionals often use the word 'discipline' to mean a 'field of study,' such as medicine, social work, or education.  A Multidisciplinary Team could consist of GP’s, Consultants, Social Workers, Physiotherapists, Clinic Nurse Specialists, Occupational Therapists, SBHI Family Support Worker, Parents/Guardians/Carers, Teachers and any other professional who may be working with your child such as a Special Needs Assistant.  The team works together to find the best solution to your child’s social, emotional and physical needs.

 

FIND THE RIGHT CHILDCARE SERVICE FOR YOUR CHILD

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Free Pre-school Year

As part of the April 2009 Budget, a new scheme to provide for a free Pre-school Year in Early Childhood Care & Education (ECCE) was announced by the Government. The new scheme will be implemented by the Office of the Minister for Children and Youth Affairs (OMCYA) and will be open to all private and voluntary pre-school services which meet the requirements of the scheme.

Some main points of the scheme:

• Parents who avail of the scheme in a playschool will be entitled to a free pre-school provision of 5 weekly sessions of 3 hours per day for 38 weeks of the year. The weekly capitation payment of €64.50 will be made payable by Children and Youth Affairs to the childcare service.
• Parents who avail of the scheme within a full or part-time childcare service will be entitled to 50 weeks of free preschool provision of 5 weekly sessions of 2 hours 15 mins per day. The weekly capitation payment of €48.50 will be made payable by Children and Youth Affairs to the childcare service.
• Scheme will commence in January 2010 but will then run from September to August
• The scheme is open to all children aged between 3 years and 3 months and four years and six months on September lst. To avail in January 2010 children must have been born between February 2nd and June 30th 2006. To avail in September 2010 children must have been born between March lst 2006 and June 30th 2007.
• Childminders and preschool services who are notified to the HSE or those registered with The IMEB can apply to participate in the scheme.

The preschool year will be guided by the principles of Síolta, The National Quality for Early Years.

County & City Childcare Committees

There are 33 County and City Childcare Committees (CCC’s) established nationally. Childcare Committees can offer you advice on registered childcare facilities in your area.  To locate your local CCC search Childcare Committees in your county.  Most Childcare Committees have their own website.

What to look for when visiting a Childcare service

If you are looking for childcare, you probably have a good idea of what you want — a place that is safe, happy, and loving, where children can learn and have fun. At the same time, childcare must also meet your needs. Childcare should be convenient, affordable, and offer care when you need it. Finding childcare that has the quality and convenience you want —at a reasonable cost—can be a real challenge. It is rare to find the perfect situation but it is possible to find a very good situation that will meet your needs.

Before registering your child with any childcare service, it is strongly recommended that you visit the service while children are present to evaluate the type and quality of service.

Five Steps to Choosing Good Childcare

Step 1 – Get Organised

Finding quality child care is going to take a little homework.  If possible, begin gathering basic information several months before you think you will need child care.

• Ask your friends and co-workers for recommendations.
• Contact your County Childcare Committee or the HSE for names and contact details of childcare facilities in your area, a list of childminders is also available through your local Child Care Committee office, along with other helpful information.

Step 2 – Conduct a Telephone Interview

Save time and energy by using the phone to narrow your search. It is a good idea to contact at least three different childcare facilities and childminders. To get the best response, avoid calling at busy times such as arrival, departure, or lunch time.  Suggested questions to ask:

Availability

• What ages are accepted?
• Is there availability?
• Is there a waiting list?

Hours & Location

• What are the hours for full- or part-time care?
• Is the service close to home?
• Is the service close to work?

Cost

• When are fees due? How much?
• Are there different fees for part-time or full-time care?
• Are there different fees for children of different ages?
• Do fees include the provision of meals?
• Do fees include formula or nappies?
• Is there still a charge when a child is sick or on holidays? (there usually is)
• Are there discounts for siblings?
• Are there extra fees — supply fees, late collection fees?

Quality Issues

• How many children are cared for and what are their ages?
• How many adults are there per child?
• What type of education or experience do the childcare workers have?
• Is it OK to visit the service and when?
• Is the service notified to the HSE?

Step 3 – Make a Visit

It is important to visit the services while children are there. You will need to consider accessibility, affordability and quality. Good quality childcare has many long term benefits for children and their families and a quality, play-based curriculum will promote children’s development in all areas.

Visit at least three services. Be prepared to spend some time — at least an hour or longer.

You should expect:

• a warm greeting
• short introductions to both adults and children
• a brief tour
• an explanation of fees and policies
• an invitation to stay a while to see the daily routine and children playing

Most services will have information to hand, possibly in the form of a Parent’s Handbook. This should contain comprehensive and accurate information detailing opening hours, fees, facilities offered, policies and procedures etc. This should leave you with fewer questions to ask however, answers to the following questions are very important in order for you to make an informed decision.

Some things to bear in mind include:        

• Was a member of staff available to welcome you and accompany you around the service?
• Is the environment caring, safe and friendly?
• Is the facility wheelchair friendly?
• Were you and your child made comfortable? (It is important that both parent and child are comfortable in the service).
• Are an adequate number of adults available to supervise and care for your children?
• Did the children appear happy and stimulated?
• Are you happy with the arrangements in place for feeding your child?
• Is adequate space available for the number of children being cared for?
• Are there enough toilets and washing facilities for the children?
• Is there a security system?
• Does the setting have definite policy guidelines on settling children into the service that allow the parent to stay with their child until they are both happy?
• Does the service keep records on each child and discuss each child’s development with their parents?

Partnership with Parents

• Are parents able to drop in at any time or is it appointments only?
• How is information relayed to parents about their children?
• Verbally, written, daily, weekly, monthly or at the end of each term?
• Are the staff welcoming, approachable and willing to answer your questions?
• Does the service work in collaboration with parents?
• Does the service keep confidential records on each child and discuss each child’s development with their parents?
• Are written programmes of forthcoming activities prominently displayed and available to parents?
• Do they observe and assess children’s attainments and interests and use this as a basis for planning future activities.
• Do the staff members have the relevant knowledge and understanding to support parents and children with disabilities or specific requirements?
• What does the staff know about Spina Bifida and Hydrocephalus? Are they willing to learn?
• Are the toys and equipment safe, clean, suitable and accessible?
• Is there plenty of equipment and resources available for the children?

For babies under 1 year these should include:

• Mobiles, musical toys and rattles, washable soft toys of different textures, activity centres, baby gyms, bricks, stacking toys, pull-along toys and a range of books - board, soft plastic, foam and cloth.
• Are babies talked to, sang to and given individual attention and physical contact?
• Are their positions changed regularly for comfort and to vary the environment?
• Is there space for safe movement – rolling, crawling, first steps?
• Is the environment colourful and stimulating?

For children 1-3 years these should include:

• Opportunities for messy play – sand, water, paint. modelling materials – clay, play dough
• Opportunities for role play – home corner, dolls, play food, dressing-up clothes, vehicles, farm sets etc. that reflect the diversity of our society
• Opportunities for construction – blocks and bricks of different sizes and materials, interlocking bricks such as Duplo, junk-modelling materials
• Opportunities for physical play – climbing, running, jumping, ring games, ball games, dance
• Opportunities to develop fine motor skills – threading, lacing, jigsaws, drawing, cutting and sticking
• Activities involving story, music and drama
• Activities designed to promote the use of the 5 senses and to develop an appreciation of the natural environment
• Games with simple rules to encourage social skills of co-operation and interaction

For children over 3 years:

• Activities and experiences should include all of the above as well as providing some more structured activities designed to nurture the following:
• Language skills – talking - about ideas and feelings;
• listening - to adults and other children; early reading and
• writing e.g. listening to and creating stories and rhymes
• Mathematical knowledge – space, shape, volume, capacity, measures, sequencing, counting, patterns
• Knowledge of science, technology and the environment – observing, questioning, investigating, classifying in relation to forces, materials, animals and plants

Suggested Questions to Ask:

• Are all the activities offered all day or part of the day?
• Are the children free to choose their activities?
• Are there lots of examples of children’s work displayed?
• Are the children properly supervised but still allowed to experience activities that are challenging and exciting?
• Are the children happy and engaged in the activities?
• For all children, is there a balance between activities that are directed by staff and those which the child chooses for him/herself?
• Finally, do the children seem happy, purposeful and safe?

What outdoor facilities are available?

• Is the play area suitable, safe and secure at the boundaries?
• Are there a variety of surfaces?
• Is the equipment safe and suitable for the age of the children?
• Are children given access to outdoor activities every day?

Further questions to ask

• Will you be consulted about how to deal with your child should he/she become ill, distressed or angry?
• What happens if staff are ill or on holidays - who replaces them?
• What is the settling in policy?

Step 4 - Check References

Don’t be shy about checking references. Selecting a childcare provider to share the care of your child with is one of the most important things you will ever do.
Ask each childcare service for at least two parent references and their phone numbers. Most parents are happy to share information with other parents and can be a wonderful resource. Parents who check references say they often get information they couldn’t have gathered any other way.

Step 5 – Make a decision

Remember that it is OK to be choosy. Review the information you have gathered and call back if you have questions that were not answered. Trust your gut instinct. If you are not comfortable with what you have found thus far, keep looking.

If a child care arrangement you like is full, put your name on a waiting list. Even if you must use another program temporarily, you will have this as an option if things don’t work out. Prepare your children by talking positively about the new childcare situation and by letting them visit the place beforehand. Ask your new childcare facility if it would be OK for your child to bring a favourite toy, teddy bear, or blanket to help ease the transition.
           

Click here for further information on Childcare Regulations click here

 

EDUCATION – The Primary & Secondary School Years

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Successful integration of a child with Spina Bifida and/or Hydrocephalus in mainstream education can only be achieved through a genuine interest and understanding of their needs physically, psychologically, emotionally and socially.

Schools should effectively identify the needs and subtle differences in learning styles or difficulties with perceptual or motor skills.

The procedure for integration to mainstream school should start as early as possible with parents making investigations as to the appropriate primary school for their child as early as 12 months before their child is due to start.

A child’s success in life depends upon support from many people—parents, teachers, peers and community members. Children with Spina Bifida already have a medical team in place, a group of professionals who work together to ensure optimal health. Equally important is an educational team, made up of teachers, parents, SNA’s, NEPS, SENO’s, (see Education Supports and Provisions on this page for more information about SNA’s NEPS and SENO’s) occupational therapists and even peers, to ensure optimal learning conditions.

Any intervention plan should cover all aspects of a child’s school life: class, breaks, school trip, assembly and extracurricular activity. “Special education” need not be a physical place to which a student is assigned. Rather, it’s a full spectrum of compensations, accommodations, modifications and strategies.

Special Needs Education

You are a person with special educational needs if your capacity to participate in and benefit from education is restricted due to an enduring physical, sensory, mental health or learning disability.   The policy is to provide special needs education in mainstream settings as far as possible.  The EPSEN Act 2004 provides that children are to be educated in an inclusive setting unless this would not be in the best interests of the child or the effective provision of education for other children in mainstream education. 

Education for children with special needs may be provided in ordinary classes in mainstream schools, in special classes in mainstream schools or in special schools. 

Special needs education means the special educational arrangements which are in place for people with disabilities.  All children – including children with disabilities and children with special needs – have a constitutional right to free primary education.  Children with special educational needs have the right to free primary education up to age 18. In the Irish Constitution there is information about the role of the State in providing education and the rights of parents.   For further information click here

Parents & Teachers

Developing positive relationships between parents and teachers is a key part of integrating a child with Spina Bifida and Hydrocephalus into a classroom.  Most parents have had to become experts as they’ve dealt with their child’s medical, educational, social and emotional needs.  Recognizing and validating their knowledge about their child’s intellectual and social abilities helps create open lines of communication, through which a child’s strengths and weaknesses can be honestly discussed.

Overview for Learning

Physically a child with Spina Bifida and/or Hydrocephalus can be ambulant, may use calipers and walk with an aid e.g. crutches or be a wheelchair user.  A child with Hydrocephalus may be as ambulant as any other child in the classroom.  Children with Hydrocephalus create a good initial impression and may relate extremely well with you due to their pleasant, charming personality and very verbose (fluent use of language).

Difficulties pertaining to academic learning become apparent only on better acquaintance and may not always be recognised as being part of the condition Hydrocephalus, sometimes referred to as the “Hidden Disability”.   Some of the difficulties such as poor concentration, forgetfulness, clumsiness, may be overlooked or go unrecognised because they are similar to those experienced by other children.  However, unlike other children who will ‘grow out of’ these difficulties children with Hydrocephalus need to have more attention paid to these areas.  They will need specific education plans put in place to assist with learning tools which will allow them to either overcome or use other tools to support their development in these areas. 

When difficulties with writing, drawing and number work are observed it may be difficult for teachers and SNA’s to understand because in other areas of learning the child performs competently.

Since the difficulties in various systems of cognitive learning are as a result of Hydrocephalus, the difficulties will remain persistent and can only be improved with specific attention and understanding.

 

LEARNING & TEACHING FOR TEACHERS & PARENTS

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A careful analysis of the child should be undertaken.  Observe very closely and record any possible areas of concern.  Further information on Observations for Teachers and SNAs click here (PDF)

The analysis should include:

Attention Span (short)

A child with Hydrocephalus may present with difficulties with attention e.g. may become restless and easily distracted.  This can be attributed to a number of different reasons such as difficulties in other areas of learning e.g. visual perception, memory, motivation etc

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Short-term Memory

Child may appear forgetful and misses the point of questions and explanations.  There may be difficulty in remembering instructions.  Visual memory difficulties hinder copying from the blackboard successfully. 

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Visual Perception

A child may Hydrocephalus may present with difficulties in visual-motor skills and visual spatial awareness. 

Further information for parents and teachers click here (PDF) Physical Abilities PDF

Motivation

The child may require a verbal prompt or stimulus to get started.  Other innate difficulties e.g. poor hand function, short-term memory, poor hand-eye coordination, and poor eye-scanning ability may prevent successful achievement of tasks. 

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Ability to Generalise

Difficulties in reasoning, affects a child’s ability to form concepts and generalise.  The child may be unable to use knowledge gained in one area and transfer it to another area e.g. translating mathematical concepts to concrete examples.  A child with specific difficulties in sensory or motor organisation will display poor reasoning ability.

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Sequencing

Due to Hydrocephalus, the brain can have difficulty processing information quickly, efficiently and in sequence.   A child may have a difficulty in remembering a sequence of tasks; a number of instructions e.g. Get your pen and copy book out, turn to page 5 and count how many dogs there are on the page.   The child may have difficulty in making prompt decisions.  Comprehension may be poor due the child’s inability to sequence what is said correctly. 

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Concept of Time & Speed

Words like “yesterday”, “tomorrow” or “hurry up” may hold no meaning to a child with Hydrocephalus.  Because of this lack of understanding children may require more time to complete tasks and tests.  For further information click here (PDF)

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Hand Skills

Children with Hydrocephalus may display poor manual dexterity and immature arm movements.  As a result more practice and teaching will be required as hand function does not improve with age and will require assiduous teaching. 

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Hand-Eye Coordination

Unlike their peers a child with Hydrocephalus may present with underdeveloped and underperformance in relation to pencil and paper tracing tasks, free-hand drawing and copying from the blackboard.  Their work may resemble that of a considerably younger child and will benefit from focused training in this area. 

Further information for parents and teachers click here (PDF)

Handwriting

Children with Hydrocephalus may have difficulty in acquiring good writing skills, this may be due to visuo-motor, visuo-perception and visuo-spatial difficulties such as wiring become a tedious task.  Because of difficulties in making spatial judgements, letters may be too widely or narrowly placed in relation to each other.  Letters may be badly formed, sometimes reversed.  Spacing and size of words and letters are uneven and writing may be badly aligned.  As such, a considerable amount of practice in letter formation will be required.  Discourage “pattern copying” when teaching writing skills as transferring this skill to regular writing will hold its own difficulties particular if the child has difficulty in, their ability to generalise and with visual perception.  As a number of children with Hydrocephalus are left-handed they may require a lot more guidance and support when learning to write.  In order to help a child with poor handwriting, identify the underlying reason for the difficulty: (a) hand function (b) visual perception (c) poor memory, sense direction or sequencing (d) concentration

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Number Work

Children with Hydrocephalus can present with exceptional skills in certain aspects of number work and poor in other areas.   Poor visuo-spatial ability can make it harder for them to arrange the figures in the appropriate columns or they may have difficulty in setting out written sums.  Their ability may be affected by (a) visual perceptual difficulties (b) left to right discrimination (c) frequent hospitalisation (d) poor attention span (e) poor eye-scanning and (f) poor memory organisation (difficulty in identifying the correct digit on which to carry out computations).  Progress in number work may also be hampered by reading and writing skills.  It is important to identify the areas affected quickly so that appropriate preventative or remedial action can be taken. 

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Further Strategies to help with Classroom Learning

Early identification is the most important tool for overcoming learning disabilities. In the best-case scenario, the child with Hydrocephalus will have undergone comprehensive evaluation by an experienced neuropsychologist, preferably in the preschool years. In reality, however, many children receive only adequate to insufficient evaluation from a tester who is not experienced with Hydrocephalus or with the more complex issues involved.

Task analysis - breaking an activity into smaller, achievable steps - is an excellent strategy. Using strengths (especially verbal) and allowing alternate means of expression (such as a tape-recorder or a computer) can be very helpful. Motivation is also key.

Teachers and Parents can:

• Be sure to have the child’s attention before telling or showing him or her something.
• Give short assignments that can be done successfully.
• Use schedules and lists wherever possible.
• Provide an extra set of books for use at home.
• Allow verbal reporting as an acceptable alternative to writing.
• Provide additional time to complete timed tasks such as tests and assignments.
• Provide a separate room for taking exams, away from distractions.
• Decrease the required quantity of written work.
• Break down tasks and instructions into small, clear steps.
• Allow the use of calculators for math problems and tests.
• Allow the student to use a computer and email for homework assignments.
• Communicate with parents early and frequently.

With their teachers’ and parents help, students can:

• Obtain a set of notes from the teacher, or have a peer make a copy of their notes.
• Use a timer or a watch with an alarm.
• Reduce clutter in work area.
• Position desk close to the blackboard or where distractions are reduced.
• Use a homework book, organizer or notebook to keep track of homework assignments.
• Use graph paper for math assignments, to keep columns aligned and numbers organised.

Lee loves math, but he works more slowly, and completing homework assignments can take him a very long time. So instead of asking him to complete all ten problems in a homework assignment, his teacher allows Lee to do, say, five of the problems — which demonstrates his understanding but doesn’t monopolise his evening.

Behaviour

Physical disability may affect behavioural and emotional development.  Children may appear less mature and anxieties, tensions and frustrations are often concealed.  Children may react to such emotions by appearing “passive” in nature.

Children with Hydrocephalus often exhibit behaviours that are mistakenly attributed to disruptive tendencies. If the child’s behaviour deteriorates rapidly, think shunt; if the onset is insidious, it is likely to be due to the problematic behaviour caused by the Hydrocephalus. 

Further information for parents click here (PDF)
Further information for teachers click here (PDF)

Social & Emotional Issues

Physical disability may affect behavioural and emotional development.  Children may appear less mature and anxieties, tensions and frustrations are often concealed.  Children may react to such emotions by appearing “passive” in nature.

Children with Hydrocephalus often exhibit behaviours that are mistakenly attributed to disruptive tendencies. If the child’s behaviour deteriorates rapidly, think shunt; if the onset is insidious, it is likely to be due to the problematic behaviour caused by the Hydrocephalus. 

Further information for parents & teachers click here (PDF)

Further Strategies to help with Behaviour, Social and Emotional Issues

It is extremely important for the social and emotional issues simply to be acknowledged. They can then be better defined through testing and included in the child’s IEP.  Early intervention is absolutely crucial. Even if a child does more or less catch up with her peers, it will probably happen over time and some skills may always be missing. The first step is a neuropsychological evaluation by an experienced neuropsychologist, which can pinpoint areas of deficiency and identify the necessary strategies.

Parent & Teachers can:

• Assume you have to tell the child everything—he or she cannot simply observe and learn.
• Verbally teach strategies for conversation, such as give and take, beginnings and endings of a conversation, how and when to change the subject, formal versus informal speech and tone of voice.
• Verbally teach strategies for assessing body language (facial expressions, correct social distance, etc.).
• Talk through situations in order to give the child a verbal view of someone else’s internal speech process. Help the child develop a sequence of steps for self-monitoring, verbalizing each step.
• Verbally point out distinctions between appropriate and inappropriate behaviour; group the child with good role models.

Practice Makes Perfect

Parents and teachers can help children with Hydrocephalus learn more effective social skills by talking about social rules and playing games in which children guess the feelings that go with facial expressions and tones of voice, and figure out appropriate responses.

For some children, it may help to write out scenes describing new—or even everyday—social interactions, so that they can learn what is expected of them. In rehearsing these scenarios, they can also learn what kinds of phrases and emotional responses are expected of them.

Precocious Puberty

Some children with Hydrocephalus may develop early puberty. It is seen more often in girls than in boys. Preparation of the child for the onset of periods and sexual development needs to be handled sensitively. Further information for parents and teachers click here (PDF)

Sports

Many parents and teachers worry that, if a child with Hydrocephalus joins in with the games and sports that their friends enjoy, damage to the shunt is likely to follow.  Shunts are, in fact, difficult to break or dislodge and most sports - with few exceptions - should be encouraged.  Further information for parents and teachers
click here (PDF)

Physical Disabilities

If a child has a physical disability associated with paralysis and skin sensitivity, please be vigilant with the following in the classroom and school environment.  

Children with paralysis will not feel pain in the area of their paralysis and therefore should not sit next to a radiator as this may burn them and because of paralysis they will not feel their skin burning.  Likewise if a child falls and breaks a bone, again this may not be felt and should be assessed by medical personnel or first-aid staff to ensure no break has occurred.  Hot items such as laptops left on laps can also cause skin damage and severe burns if left for long periods.

Common sense should prevail and children with a physical disability should not be discriminated against or treated differently because of their paralysis.  It is the responsibility of school personnel to ensure the safety of their pupils in a way that does not exclude them.

 

TEACHING STRATEGIES TO IMPROVE CLASSROOM PERFORMANCE

This page is available in a printable PDF format for your convenience.

Each child with Spina Bifida and/or Hydrocephalus is different and therefore should have a teaching/training programme which is specifically designed to meet the individual needs of the child.  How a child with Spina Bifida and/or Hydrocephalus may be assisted to attain optimal potential is dependent on a structured, strategic classroom programme. The learning process may be slow but substantial progress can be made through patience and perseverance both on part of the child and the teacher.   Teaching strategies should include:

• Understand the specific needs – an awareness of Hydrocephalus and its affect on cognitive functioning and learning.
• Observe, Recognise and Identify needs and problem areas, difficulties they experience. In order that appropriate remedial action be taken.
• Inform staff/class etc. so that there is an understanding of the medical condition. Be aware of physical symptoms e.g. drowsiness, lethargy, complaints of headache due to shunt problems/blockage. The child may feel hot and flushed indicating a urinary tract infection.
• Select seating partners carefully.
• Encourage the child to do what he/she can do for himself/herself and explain to the class why this should be the case. (Children must not learn to become dependent).
• Keep an eye on toileting arrangements. Ensure cleanliness and hygiene rules are followed. Allow sufficient time for child to carry out self-catheterisation in private. Be discreet.
• Where possible, develop hand skills (manual dexterity, motor control). Bear in mind these children lack in early practice in manipulative skills.
• Encourage correct body posture and use of arms and hands to produce neater work. Table height should be at a suitable level and ensure wheelchair brakes are on to improve stability when child is working at the table.
• Learn to read body language e.g. facial expressions, as this will indicate if child has understood.
• Check with child what he/she sees “visually”. You may be able to pinpoint a specific difficulty.
• Train child to attend selectively to specific attributes of the stimulus/cues.
• Develop appreciation of the 3-dimensional world (contributing factor to poor drawing skills).
• Develop spatial judgements in relation to distance, direction, size, and position. An understanding of “quantity” (a necessary requisite for learning arithmetic).
• If a rich “spatial” and “temporal” programme is pursued in the primary school there may be fewer problems at the secondary stage.
• If a child has figure-ground discrimination problems or is easily distracted by irrelevant stimuli on a page, use simplified teaching material.
• Develop observational skills by encouraging the child to pay particular attention to “details” necessary in science and technology and other classroom activities.
• Impress to their strengths. These children have good auditory skills. Use verbalization in number work, learning to write. The child should relate what he/she is saying to what he/she is doing. This will help reinforce the learning.
• Due to poor short-term memory and sequencing difficulties, they are likely to forget instructions. Use short simple words, repetition and reminders such as notes, checklists, and pictures. Use “association” technique e.g. words, situations and simple habit training to reinforce learning.
• Help the child to learn the memory and thinking skills that develop and come naturally to others. The child needs to learn to “stop and think” before acting.
• Check out listening memory. Keep instructions brief, worded positively and to the point. Avoid using the word “Don’t” because the extra time wasted processing means the most important part of the instruction is ignored.
• The child may have difficulty in focusing attention selectively, in inhibiting responses to competing stimuli and in maintaining attention on a particular item. So they may actively seek out distraction from a task which they cannot cope with. They may do this by suddenly introducing quite unrelated topics of conversation. A structured teaching programme combats distractibility. Deal with distractibility quickly and modify behaviour by using a systematic strategy.
• Sheer physical tiredness can result in poor motivation and passivity. Remember their tolerance towards coping all day will not be as high as their able-bodied peer-group. This tiredness can often be accentuated by poor general health. These children can be extremely tired. Other contributing factors like poor hand control, perceptual or visuo-motor difficulties may make a task seem too difficult and inevitably results in the child giving up easily.
• Where possible reduce demands for instance lower the standards for acceptable handwriting especially when time pressures are imposed e.g. when doing exams/tests.
• Reduce the amount of written work by introducing photocopied handouts especially in relation to number work to overcome the burden of sheer mechanics of copying out the sums. If practice in computation is the aim hand out sheets where they have to fill in just the answers.
• Look at enjoyable ways of developing higher level skills relating to perception, concept formation and abstract reasoning. Success can be achieved once the training exercise is motivating and appealing to the child and doesn’t seem like hard work.
• Children with Spina Bifida and/or Hydrocephalus are sociable, out-going and enjoy having duties which makes a definite contribution to the class and where they feel “important”. Give them tasks, which are interesting to them and at the same time permits skill practice in areas where there is weakness.
• Some children with Hydrocephalus are not used to expressing their feelings; they require plenty of opportunities to learn to do this.
• There may be a difficulty with non-verbal communication, “reading” the body language of others and reacting appropriately. The number of social roles they have learned is very limited and they tend not to “switch” between these roles as easily as other children. They are unable to recognize a situation and use what is appropriate communication. Teach the child what is socially acceptable behaviour and how to behave appropriately in different situations. Social skills are only learned through active social interaction and it is also through mature participation that a child can gain expertise and competency.
• Teach the child to generalise the skills learned to other tasks. Help the child to apply their skills to educational tasks. Once a new task has been mastered, its applicability to other situations must be shown to apply in a large number of different situations. One of their major difficulties is transferring skills to a new environment.
• Classroom programmes should incorporate a systematic, structured approach. The exercise should be graded and sometimes broken down into smaller, easy steps. The programme should be specifically designed to meet the special needs of the child.
• Provide an opportunity for the child to improve and apply their perceptual and spatial skills.
• A healthy liaison between teacher and parent is absolutely crucial towards assisting the child to manage physically, socially, emotionally and psychologically in the classroom. Be aware of frustration and tackle problems immediately.

A good teacher-parent relationship is advisable especially in cases where the learning and training must be continued on in the home environment. The teacher should not stand alone in dealing with the child. The teacher should be prepared to liaise with other professionals involved in the management of the child e.g. educational psychologists, occupational therapists etc. Contact with the relevant disability association information, in this case, Spina Bifida Spina Bifida Hydrocephalus, Family Support Worker, will provide further support in understanding a very complex but interesting medical condition. Teaching a child with Spina Bifida and/or Hydrocephalus can be a very challenging and rewarding experience. To an interested teacher, the working of the human brain (with Hydrocephalus) can be rather fascinating and full of intrigue.

The school environment has a very important role to play not only in term of educational attainment but also in preparing the child with Spina Bifida and/or Hydrocephalus for adulthood and a better future.

 

PRIMARY & SECONDARY EDUCATIONAL SUPPORTS AND PROVISIONS

This page is available in a printable PDF format for your convenience.

Many children with disabilities or special needs are in ordinary classes in mainstream schools. They may get help from learning support and resource teachers and from special needs assistants (SNAs). These supports for children with special educational needs are available in primary schools and post-primary schools. 

EPSEN Act 2004

2.1 Education Plans

The EPSEN Act 2004 provides for the provision of education plans for students with special educational needs (SEN). Under the Act, children with SEN will be educated “in an inclusive environment with children who do not have SEN”, unless this should be inconsistent either with the best interest of the child, or with the effective provision for the other children.

2.2 Identification & Assessment

When a student is identified to a principal as not benefiting from the educational programme being provided in their school, the principal “shall take such measures as are practicable to meet the educational needs of the student concerned.” Having taken such measures, if the student continues not to benefit, because of their SEN, the principal will arrange for the student to be assessed. The principal must consult the parents prior to making this arrangement.

For a full copy of the EPSEN Act click here

NCSE – National Council for Special Education

The role of the NCSE is to allocate resources to schools for the next academic year taking into account new pupils enrolling with special educational needs and also pupils leaving who have been in receipt of resources. In respect of pupils in receipt of SNA support it should be noted that this support may reduce over time as their independent living skills improve.  For further information click here

SENO’s – Special Education Needs Organiser

SENO is a Special Education Needs Organiser who works for the National Council for Special Education (NCSE) and is an important link between the school, the Council and parents. For example, the SENO deals with applications for additional support for pupils with SEN.   It is very important that this application includes all your child’s needs e.g. catheterisation, accessibility adaptations and intellectual needs etc. This will allow provisions to be put in place prior to your child attending mainstream school.  For further information click here

To contact your local SENO click here

SNA’S – Special Needs Assistant

Special needs teaching assistants support students with special educational needs (SEN) in the classroom as directed by an SEN teacher in order to help pupils succeed with their learning. The work of a special needs teaching assistant can vary greatly depending on where they are working and the individual needs of the pupils. This could include:

• assisting with pupils' physical needs, including hygiene and feeding, as well as assisting with therapy sessions;
• helping with pupils' school work under the supervision of an SEN teacher;
• helping pupils increase their confidence, self-esteem and independence; helping pupils who have difficulty communicating with others, including those whose first language is not English.

To view guidelines from the NCSE for the implantation of a Special Needs Assistant click here

IEP – Individualised Education Plan

IEP stands for Individualised Education Plan (alternatively called an "Individualised Education Plan," "Individual Education Programme," or some combination thereof). This is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child's classification, placement, services such as a one-on-one aide and therapies, academic and behavioural goals, a behaviour plan if needed, percentage of time in regular education, and progress reports from teachers and therapists. For further information click here

Learning Support & Resource Teachers

Learning support and resource teachers are appointed to provide support under the general allocation arrangements.  Resource teachers provide individual support to pupils with low incidence disabilities.   An effective learning-support service can play a central role in raising standards in literacy and numeracy in children with learning difficulties and in providing the opportunity for every pupil to reach a competent level in these areas.

Learning difficulties includes pupils with mild speech and language difficulties, mild social or emotional difficulties and mild co-ordination or attention control difficulties associated with identified conditions such as dyspraxia, attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD) and Hydrocephalus.  Pupils with these conditions who have been assessed as being in the low incidence category get individual support.

Each school decides how the resources for support are used and how they are divided among the students who need such support. The additional teaching may be provided in the classroom or in small separate groups. Some pupils may need additional one-to-one teaching for a specified period.    For further information click here

Assistive Technology

Assistive technology is technology used by individuals with disabilities in order to perform functions that might otherwise be difficult or impossible. Assistive technology can include mobility devices such as walkers and wheelchairs, as well as hardware, software, and peripherals that assist people with disabilities in accessing computers or other information technologies. For example, children with limited hand function may use a keyboard with large keys or a special mouse to operate a computer, people who are blind may use software that reads text on the screen in a computer-generated voice, children with low vision may use software that enlarges screen content, people who are deaf may use a TTY (text telephone), or people with speech impairments may use a device that speaks out loud as they enter text via a keyboard.

A tremendous variety of assistive technology is available today, providing the opportunity for nearly all people to access information technology (IT). However, an individual's having proper assistive technology is no guarantee of having access. IT accessibility is dependent on accessible design. IT products must be designed and created in ways that allow all users to access them, including those who use assistive technologies.   

Your Occupational Therapist will be able to assess your child in relation to their assistive technology requirements.

NEPS - National Educational Psychological Service

The National Educational Psychological Service (NEPS) is a service of the Department of Education and Science. NEPS psychologists work with both primary and post-primary schools and they are concerned with learning, behaviour, social and emotional development. Each psychologist is assigned to a group of schools.

NEPS psychologists specialise in working with the school community.  They work in partnership with teachers, parents and children in identifying educational needs. They offer a range of services aimed at meeting these needs, for example, supporting individual students (through consultation and assessment), special projects and research.

"NEPS mission is to support the personal, social and educational development of all children through the application of psychological theory and practice in education, having particular regard for children with special educational needs."

Children are normally referred to NEPS through the school principal. Parents should discuss any concerns regarding learning difficulties with school personnel in the first instance. Questions about the NEPS service and assessments should be made directly to school personnel.

If your child is meeting a psychologist, should you tell him or her first?

Take your child's age into account. It may be better to tell older children. Some children feel more comfortable knowing what to expect, while others become nervous by being told in advance.

Psychologists sometimes like to observe children in class (they do this discreetly, so that neither the particular child nor his / her friends know who is being observed). It is often better if the child is not expecting this.  For further information click here

Adaptations & Accessibility

The school must provide accessible facilities which enable each child to have access to an environment which is respectful, safe and accessible. Funding for adaption’s can be sourced from the Furniture and Equipment section of the Department of Education and Science, Portlaoise Road, Tullamore, Offaly (057) 932 4300.

Transport

Special transport arrangements, including escorts and safety harnesses are available for children with disabilities attending school.

Children who qualify for special transport are those who are enrolled in special schools or special classes in a primary school.

The School Transport service may not be available in all areas. Where the special transport cannot be provided, you may be eligible for a transport grant to help with the cost of making private transport arrangements.

The transport grant is paid:

• If the child has to be brought to a specific pick-up point to meet a special transport service
• If the child requires a supervised transport service and it is not possible to provide this service
• If there is no special transport service available for a child with special needs travelling home from a residential school at the weekend.

Harness and escort provision

Resources are also available for the provision of a harness for children travelling on special transport services. Applications may be made by the parent/guardian or school management.

An escort may be provided for children in special schools who have physical disabilities and to children with hearing/visual impairment. Applications may be made by the school management.  For further information on transport provisions click here

Home Tuition

Home tuition or schooling is for children who cannot go to school because of a serious medical problem or a lack of a suitable place. Children with autistic spectrum disorders or with severe learning disabilities may also be given home tuition during July.  For further information click here

July Education Programme

The July Education Programme is a funding arrangement for schools to provide further special needs education in the month of July. Special schools and mainstream primary schools with special classes catering for children with autism may choose to extend their education services through the month of July. There is also a July Programme for pupils with a severe/profound general learning disability. The funding also covers transport and escort services for the children.

If schools are not participating in the July Education Programme, home tuition is offered as an alternative for the pupils who would normally attend such schools. You can find information about the July programme on the Department of Education and Science website click here

Provisions for State Exams

Students in secondary schools in Ireland with special needs may have special arrangements made for them while sitting State examinations. (That is, Leaving Certificate and Junior Certificate examinations). Candidates with disabilities (for example, visual impairments, motor and mobility impairments, etc.) can apply through their school for reasonable accommodation during examinations.

What sort of 'reasonable accommodation' is available?

Examples of reasonable accommodation include the following:

• the provision of enlarged and/or Braille versions of questions for visually impaired students
• you may use voice-activated computers, tape recorders or scribes (other people to do the writing)
• You may do your examination in a hospital or in any other stand-alone centre
• You may also get extra time to complete the examination. In the Leaving Cert, you may get 20 minutes extra in some subjects - Irish, English, History and Geography.
• If you are deaf or hard of hearing, you may be exempted from the aural part of the examination

It's important to be aware that students with special needs may apply to have part of a State examination waived and to be marked out of 100% on the balance of the paper. The national marking schemes for the subjects concerned are organised in such a way to ensure that students with special needs have the same opportunity to score full marks regardless of the exempted parts of the paper.

Accommodation that can be approved by your school

Your school has the authority to make special provisions for students with special needs during State exams on the basis of what is best for you. Some of the special provisions your school can make include:

• Taking medicine, food or drinks into the examination centre where this is required for medical reasons.
• Use of a special desk or chair that is used in your classroom
• Use of low-vision aids that you normally use in the classroom
• Ensuring deaf and hard-of-hearing students are seated close to the examination superintendent
• Granting breaks or rest periods in each examination session warranted by your physical or medical condition. (Under this special provision, the time taken for rest or as a break can be compensated for at the end of each examination period to a maximum of 20 minutes).
• Taking your examinations in hospital if you have had an accident immediately prior to or during the examinations. You must contact the school immediately if this happens.

For further information click here

Special Classes and Special Schools

Where children’s needs cannot be met by the allocation of extra resources within the mainstream school, then they may be placed in special classes or special schools. These have a maximum pupil-teacher ratio of 8:1 (in many cases the ratio is lower). Special needs assistant support is provided where required. Children may transfer from special schools to special classes attached to mainstream primary schools or to mainstream classes. Children need a review assessment before transferring. The reviews are necessary so that the resource teaching and/or special needs assistants can be provided.

For further information click here

 

CATHETERISATION IN SCHOOLS

This page is available in a printable PDF format for your convenience.

Where an SNA is appointed to support a child with a physical disability they are required to carry out care needs as stated in NCSE Circular 07/02 under Appendix 1/04. Assistance with clothing, feeding, toileting and general hygiene.  For a full copy of circular click here. 

NCSE state that care needs arising from toileting, such as catheterisation are considered to be the role of the SNA and an SNA should be appointed who either has the skills or is willing to learn the skills to implement these toileting needs.  The SNA shall fulfil these toileting needs until such a time as the child is able to catheterise independently.

The school must also provide accessible facilities which enable these toileting needs to take place in an environment which is respectful and safe for the child.  Funding for adaption’s can be sourced from the Furniture and Equipment section of the Department of Education and Science, Portlaoise Road, Tullamore, Offaly (057) 932 4300.

SHUNT MALFUNCTIONS POSTER FOR SCHOOLS

This page is available in a printable PDF format for your convenience.

 

 

FURTHER AND THIRD LEVEL EDUCATION

This page is available in a printable PDF format for your convenience

College

Every year, the number of students with disabilities going to college increases – last year there were over 3,000 studying at higher-level nationwide.

Most Irish higher-level institutions have modern facilities and services in place to enable students with disabilities to play a full role in the Irish higher education system. The Equal Status Act of 2000 prohibits colleges from discriminating in any way against students on the basis of disability. This applies to all educational institutions, both public and private. If you have a disability, your first concern should be to decide upon the subjects that interest you and the higher education courses for which to apply. Once you have this decided, you can then investigate the kind of disability support that individual institutions provide.

Students with disabilities should apply through the CAO. There is a space on the CAO application form to indicate that you have a disability. Ticking this box will have no negative effect on your application; the CAO will send you a Supplementary Information Form to complete and return to the CAO in March. This form asks for more details and information about your specific situation, which the CAO passes on to the colleges to which you have applied. This allows the various colleges and institutions time to consider and prepare for any specific support that you may need.

Some colleges have a non-standard entry system, which considers difficulties that any student may have encountered that affected the CAO points they achieved. Students who complete a Supplementary Information Form may be asked for further medical information regarding their disability or other difficulties that they have encountered during their education. Factors such as frequent illness, hospitalisation and access to facilities and materials can be taken into account, and sometimes college places are offered to students with sufficient academic ability who do not reach the CAO points target. Not all institutions offer this opportunity; you should contact your chosen college directly to find out.

All third-level campuses are supposed to be designed to ensure access for disabled students. Most institutions have a Disability Support Service and a specific staff member (such as a Disability or Access Officer) with responsibility for supporting students with disabilities and helping them to play a full role in all aspects of student life, including social activities. It is advisable to call the institution that you wish to attend – and pay a visit in advance if possible – to find out exactly what support they have in place. The Access Officer may also be able to offer advice and assistance with your application.

Upon registration, students are advised to contact the Disability Support Service in their colleges and discuss the equipment or services they may require. Different students will have different requirements, but examples include full-time or part-time assistants, assistive technology (examples include audio recorders for lectures and voice recognition software for typing essays) and help with getting to and from college.

Further assistance is available from the Department of Education’s Fund for Students with Disabilities. This fund is available to both full-time and postgraduate students with a physical, sensory, or specific learning disability such as dyslexia. Funding is also available for transport, personal assistants and sign language interpreters. It is not intended to cover other costs such as food, books or study materials. There is an application process and students must provide evidence of their specific circumstances. Your institution’s Disability Support Service should also be able to help you with these applications.

There are some specific scholarship schemes in place to help students with a disability to participate in higher-level education. One example is the Bank of Ireland Millenium Scholars Trust. Again, the Disability Support Service at each institution can help with advice. Students may also be eligible for the disability allowance and local authority maintenance grant.

It is important that students gather as much information as they can to help them with the transition to higher education. Other organisations such as AHEAD, the Association for Higher Education Access and Disability (http://www.ahead.ie/), the Centre for Independent Living (http://www.dublincil.org/), and support organisations for particular disabilities can also offer assistance and advice for students starting out in higher-level education.

All students going to college for the first time face challenges, and this rings especially true for students with disabilities. However, being aware of your rights and taking full advantage of all the support and services available to you should enhance your college experience.

DARE – Disability Access Route to Education

The Disability Access Route to Education (DARE) is an admissions scheme for students with disabilities.  The scheme aims to improve access to college for school leavers with a disability. Under the scheme a number of third-level places are allocated on a reduced points basis to school leavers using the DARE scheme. To be eligible for the scheme you must provide evidence that your disability has affected your educational performance significantly by filling out the ‘Supplementary Information Form’

How the scheme works

Each of the third-level colleges participating in the scheme has reserved a number of places on their courses for school leavers who are eligible for DARE. In autumn 2009 you can find details of the places available through DARE at http://www.accesscollege.ie/dare/participate.php

You apply for DARE through the CAO.  Once you have been accepted as eligible for DARE, you then compete for the reduced point places based on your Leaving Certificate results. A ‘reduced point’ place means that you may get a place on a third-level course with less than the full CAO points. For example, if you are eligible for DARE and you get 430 Leaving Certificate points, you may be offered a place on a course that is 470 points through CAO. However, you must meet the college matriculation and any specific course entry requirements.

Additional supports

Whether you apply for college through DARE or through the standard CAO procedure, there is a range of supports for student with disabilities while they are at college. The supports available vary from college to college but may include: an orientation programme; study skills and extra tuition if required; access to assistive technology and training; mentoring.

Supplementary Information Form

To be eligible for DARE you must provide additional information on the Supplementary Information Form. It has 4 sections as follows:

• Section A is a personal statement in which you describe the impact your disability or specific learning disability has had on you.
• Section B is a second level academic reference which must be completed by your school and provides information about your educational experience and assists the decision the third-level supports you need.
• Section C is an evidence of disability form which must be completed by the accepted medical consultant or specialist. This provides verification of your disability and helps the decision about the third-level supports that you need.
• Section D is where you state that you wish to be considered for DARE.

CAO – Central Applications Office

You apply for almost all full-time undergraduate courses through the Central Applications Office (CAO). The undergraduate courses in the universities and institutes of technology include Higher Certificates - Level 6, Ordinary Bachelor degrees - Level 7 and Honours Bachelor degrees - Level 8. You can find more information about these qualifications in our document on third-level education in Ireland. There is no central applications body for Post-Leaving Certificate (PLC) courses. Students must apply directly to the individual colleges.

The CAO provides an applications pack with a handbook that lists all the courses on offer and gives information on how to apply. The closing date for applications from Irish and other European Union nationals is normally 1 February at 5.15 pm each year. Late applications are allowed up to 1 May at 5.15 pm of the same year. You can also submit a Change of Mind form to amend your choice of courses from 1 May until 1 July.

Decisions on offers of places are normally made in August and September, after the results of the Leaving Certificate have come out.

For further information visit www.cao.ie

AHEAD – Association for Higher Education Access & Disability

AHEAD, Association for Higher Education Access and Disability is an independent non-profit organisation working to promote full access to and participation in further and higher education for students with disabilities and to enhance their employment prospects on graduation.

AHEAD provides information to students and graduates with disabilities, teachers, guidance counsellors and parents on disability issues in education.

For further information visit www.ahead.ie

Further Education

Further education comprises education and training which takes place after second level schooling but which is not part of the third level system. It includes programmes such as Post-Leaving Certificate courses; the Vocational Training Opportunities Scheme (second-chance education for the unemployed); programmes in Youthreach and Senior Traveller Training Centres for early school leavers; other literacy and basic education; and self-funded evening adult programmes in second-level schools.

NLN – National Learning Network

National Learning Network is Ireland's largest non-Government training organisation with centres in almost every county in Ireland. Each year, 5,000 people come to learn and study with the NLN including many who may otherwise find it difficult to gain employment and to develop the skills to move forward with their careers. 

The organisation offers over 40 different vocational programmes which carry nationally and internationally recognised certification and are designed to lead directly to jobs or progression to further education. We also provide Continuous Professional Development courses, Assessment Services for children, adolescents and adults with specific learning difficulties, and a Disability Support Service for VEC colleges in Dublin.

For further information on course and training centres visit http://www.nln.ie/

FETAC

FETAC (the Further Education and Training Awards Council) is the national awarding body for further education and training in Ireland.  Programmes leading to FETAC awards at Levels 1 to 6 of the National Framework of Qualifications are offered nationwide by a range of providers in education and training centres, in colleges and in the workplace.

Further education and training in Ireland offers more opportunities than ever before for learners. FETAC has become a unifying force for the sector since its foundation in 2001 by providing quality assured awards that were previously certified by Fáilte Ireland (formerly CERT), FÁS, Teagasc and the National Council for Vocational Awards. FETAC has made almost 750,000 awards to date.  All FETAC awards form part of the National Framework of Qualifications www.nfq.ie.  Over 1,400 centres offer a wide variety of programmes leading to FETAC awards.

For further information on courses and training centres visit http://www.fetac.ie

Distance Learning

Distance learning is the teaching and delivery method of courses which enables students to gain education and qualifications online. It’s a system that is gaining popularity on an international stage yet there is no doubt of the stigma that remains attached to this learning format. It’s clear that while distance learning is a godsend for some, it is not suited to everyone.

Most distance learning courses are still 'asynchronous', which is a fancy way of saying learners and teachers don't have to come together at the same time, and the student can study when it suits them. Many e-learning courses, however, now have synchronous elements however, such as online chat-rooms and instant messaging where the learner and teacher can communicate in real-time, or with virtual classrooms where the teacher can talk to students situated all around the world over their broadband connections. This gives the students the opportunity to contribute in class discussions and well as interact with each other, albeit in a limited capacity.

The distinction between distance and on-campus learning can be a little blurred. Some students taking distance learning courses travel occasionally to their school or institution for progress meetings with tutors, while students on professional diploma or degree courses often attend weekend seminars or occasional intensive series of lectures.

There are numerous advantages attached to taking a distance-learning course. Chief among these is flexibility. People are less and less able to commit to rigid study timetables that require them to be at a certain location at fixed times on fixed evenings across an academic year. As well as this, distance learning students aren't constrained by their geographical location. If the course that you have set your heart on isn't available in your area, then distance learning can be a practical option.

Bear in mind that not all distance education courses are created equal. It's a good idea to look closely at the school or institution offering the course, and make sure the award is fully accredited or recognised by a relevant professional body. You should also make sure of the full costs involved, and the support available, before you hand over any cash. If you get an unsolicited email offering a top class qualification at a bargain basement price, chances are it is a scam.

For further information on courses and training centres visit
http://www.nightcourses.com/distance/index.html

 

HYDROCEPHALUS AND COLLEGE

This page is available in a printable PDF format for your convenience.

Your education dreams should not be limited by your Hydrocephalus. While many challenges remain, along with associated conditions that may affect quality of life, it is now reasonable to think that a lot of young people diagnosed in infancy with Hydrocephalus can live full, productive, happy, and satisfying lives—lives that include a college education.

Whether you choose to stay close to home or travel far away, heading off to college is an exciting, intimidating, and emotionally charged event. For people who have Hydrocephalus, a few extra challenges are thrown into the mix. Not only do you have to decide which classes to take and how to furnish your digs, you also have to start figuring out how to take charge of your own medical care, who to tell about your Hydrocephalus, and how to assert your indepen­dence. Information contained in this document was sourced from young people with Hydrocephalus who are now attending college (or who recently graduated), as well as their parents, who are coping with “letting go” while championing their children’s newfound independence.

A note to parents: This information was created primarily for secondary school students who are getting ready to head off to college. We know that you have many questions too, but it’s important that your child take the lead in discussing the following issues, implementing plans, and making decisions. Letting your child navigate this transition toward adulthood is an important part of the process of letting go.

Setting the Stage: Before you Go

When you begin considering your college options, several factors usually come immediately into play. Following are some issues you’ll want to consider before you get too far into the application process.

Location

For some, staying close to home for college feels like a safer, more comfortable option. One young woman, for example, said that she felt her Hydrocephalus limited her options, location-wise. For her, keeping her parents close by was important when she considered what might happen if she got sick and had to go to the hospital. She found a college that she really liked less than an hour from home.

For others, location is not an issue; some young people, in fact, see setting their sights on a college further away from home as an important step on the path toward independence. In this case, creating a balance between your desires and your parents’ worries is crucial. A lot of frank and open discussion may be necessary to reach a solution that supports you and validates your parents’ concerns.

Special Services

This information does not aim to address specific learning, social, or emotional issues: by this point, you’ve already made it quite a way through the educational system and are probably well aware of your own strengths and your own needs. Still, if you have specific learning requirements, it’s important to investigate the services available when you’re researching colleges. Understanding in advance the nature of the services available at each of your options should be a top priority, whether a college is local or far from home.

Medical Information

Wherever you choose to go to college, whether close to home or far away, it’s important that you have all your key medical information close at hand, in a safe place—a file folder, a notebook, a binder, or in electronic form. The road to your independence starts here. This information should include:

• Contact information for all your doctors (phone numbers, addresses, email addresses)
• A baseline scan can be done prior to you starting college, contact your Neurosurgeon
• Your medical card/GP card and or Primary Medical Certificate should be taken with you.  It is always a good idea to have photocopies of these done in case of loss
• Phone numbers of extended family members and friends to be called in an emergency
• A copy of the Shunt Complications Chart (see shunt complications in the Hydrocephalus section of our website)
• Any information about allergies to medications
• A copy of the Shunt Management Chart (see shunt management in the Hydrocephalus section of our website)
• Your Shunt Alert Card which you should carry with you at all times.  Contact SBHI or your Family Support Worker to order yours.

If you decide to attend college far away, you must also put into place a plan for local care, in the event of a medical emergency.  Contact a GP and pass on any information about Hydrocephalus to them that they may need to assist you with the management of your Hydrocephalus.  Information is available on our website or through your Family Support Worker.

The Student Health Centre

Parents emphasise, and students (sometimes reluctantly) agree, that one of the first things you should do at the start of the school year is visit your student health centre, meet the nurse or doctor in charge, and give them information about Hydrocephalus, including your parents’ contact information and shunt complications information including shunt complication protocols. Because this is medical information, it is confidential, so you don’t have to worry about an invasion of privacy. You should also indicate on the standard student health form that you have Hydrocephalus; again, this information is confidential.

Who Else to Tell?

It’s a good idea to tell your residence officer if you are staying on campus or college counsellor that you have Hydrocephalus. He or she may be able to offer support or guidance as you decide who else to tell about your Hydrocephalus. Also, alerting your counsellor to the signs of a shunt malfunction could be helpful. One young woman said “When I told my student counsellor about my Hydrocephalus and explained the warning signs of a shunt malfunction, I kind of acted as if it wasn’t a big scary deal, but at the same time said that if it were to happen, it was really critical to take me to a hospital.”

Who else should you tell? While the parents we talked to insisted that their child’s roommate should know, they also realised that young people themselves need to take the lead here, according to their individual comfort level. One of our student experts told us that after the first week of school, she felt comfortable telling a new friend that she had Hydrocephalus that she’d had several surgeries.  Sharing this information, she said, brought them closer. While you might feel like telling someone about something as personal as your Hydrocephalus is either asking for sympathy or simply being too revealing, it can also play a key role in bringing a friendship to a new level.

Another young woman said that at first she worried about who to tell and what their response would be—but then realised that worrying was pointless. After getting to know her roommate better and establishing some common ground, she explained that, for her, a really bad headache and lethargy could be signs of a shunt malfunction. A malfunction was unlikely, she told her roommate, but if one seemed possible, it was extremely important that she followed the suspected shunt complication protocol on the shunt complications information sheet. She also told her roommate where she keeps her medical info file, just in case she got sick and wasn’t able to grab it herself.

One young woman remarked that she’s sure that a lot of her college friends know about her Hydrocephalus, but that for the most part no one treats her differently. “If they didn’t understand,” she said, “then they’re not worth talking to.” Another student commented, “If you act as if you are different . . . I believe others will see you that way. Just be your­self. ”Some students move beyond simply telling chosen individuals about their Hydrocephalus, seizing the college environment as an opportunity to educate others about various disabilities—not just Hydrocephalus—by participating in awareness and advocacy projects.

Whatever your comfort level, it is critically important that you take charge, that you have a plan in place in the event of a shunt problem. Your preparation and initiative will go a long way toward gaining your parents’ acceptance of your ability to make your way in the world as a responsible, independent young adult.

Tips and Advice

When we asked college students with Hydrocephalus if they had any tips for those thinking about college, they all concurred that the most important thing you can do is yourself, no matter what. “Don’t worry,” one said. “It just stresses you out!” “Have confidence in yourself,” said another, “and others will too.”

They also offered advice on more specific concerns that might come up for college students with Hydrocephalus. Following are some of their suggestions.

Communicating with Your Parents

Most first-year students—whether or not they have Hydrocephalus—say their parents want them to check in way too often. While parents’ demands can seem pressing, especially among all the other demands of college life, parents’ support is important—and so is their comfort with your safety. So do your parents a favor, and work out a schedule for communication. Email and mobile phones can make things easier—it’s not hard to shoot your parents an email every few days, or leave them a phone message letting them know what’s going on.

While Hydrocephalus can make parents overprotective, striking a balance between their concerns and yours is crucial. Open communication is not just a good idea: it’s crucial for your parents’ sanity—and for yours. So let your parents know about the steps you’re taking to ensure your safety. Let them know when you meet with the head of the Student Health Centre, let them know how your appointment went and let them know if or when you tell your room­mate where your medical emergency folder is—you get the picture.

If your parents are confident that you’ve put an emergency plan into place—and if they know the details of that plan—they will be more comfortable letting go.

Communicating with Your Peers

While classes are obviously an important part of your education, your social life is equally impor­tant—not just partying, but meeting different people, participating in challenging and exhilarat­ing conversations, and being exposed to new ideas. One of the biggest challenges for all college students is making good friends and finding a social group that encourages you to be yourself, challenges you to grow, and allows you to enjoy new experiences. It might take several semesters, or even a few years, to meet like-minded people. Expand your boundaries: try out different student clubs or associations; volunteer for causes that are meaningful to you; check out student groups like the disability council, the women’s centre, or intramural sports.

Beyond campus, another group of people can also be valuable sources of information, support, and friendship: other college students and recent graduates with Hydrocephalus, who know what you’re going through and can offer tips on how to cope with various issues. Contact SBHI or your SBHI Family Support Worker for more information.

Headaches

Headaches are a fact of life for a lot of young people, whether or not they have Hydrocephalus. While the stress of deadlines and exams, irregular sleep patterns, too much junk food, and digs life in general can sometimes cause headaches, when you have Hydrocephalus, as you know, headaches can be more worrisome and potentially more serious.

It can be hard to tell the difference at first between a regular headache and a “shunt” headache. If a headache disappears or lessens after you take your GP recommended headache medication and lie down for a nap, chances are it’s not shunt-related. However, if a headache persists, or if you have doubts or a gut feeling that something’s not right follow the shunt complications protocol. As the saying goes, it’s better to be safe than sorry.

During crunch time at college, when stress levels are high, some young people with Hydrocephalus report more frequent headaches and difficulty focusing and concentrating. Again, the medication-and-nap route can be helpful. So can finding a quiet place to study or just relax. Beginning to understand what your body is telling you—that you need more sleep, more healthy food, even some fresh air and exercise—can help you ward off stress-related headaches.

Alcohol

It’s a fact of life that many college students experiment with alcohol. According to a number of neurosurgeons, there’s no medical evidence that a shunt directly affects your reac­tion to alcohol.  However any prescribed medications can and will affect your body’s reaction to alcohol in ways which you may not be aware or ready for. As you already know, drinking in excess is not good for anyone, what­ever their health status.

Still, even people who know better sometimes have too much to drink and find themselves re­warded with that nasty side effect, the hangover. In some ways, hangover symptoms can resem­ble those of a shunt malfunction: headache, lethargy, nausea or vomiting. However, a hangover should clear up within a few hours, or a day at most; if symptoms persist, you may be experienc­ing a shunt malfunction. Again, if you have any doubt, follow the shunt complications protocol.

You should also be aware that many medications—prescription and non-prescription—are ad­versely affected by alcohol. Some simply lose their effectiveness, while others lead to extreme drowsiness or dangerous, even deadly, side effects. If you’re taking any medications, you should not be drinking alcohol.

One student said that in her first few months at college, she got caught up in the party atmo­sphere at her school and overindulged a few too many times. After suffering through several hangovers that she at first feared were shunt malfunctions, she realised that she didn’t need the added stress. Plus, she said, she realised that she could have just as much fun at a party without getting drunk. Now, she either nurses one beer throughout the evening or drinks clear-coloured so­das with lime that look like mixed drinks. That way, she doesn’t have to keep saying “No, thanks” when she’s offered an alcoholic drink.
Other students simply opt not to drink at all. One student said that the alcohol-party culture at his school doesn’t appeal to him. Instead, he hangs out on weekends with a number of like minded friends who also aren’t interested in parties and the like and other students choose to return home for weekends.

Academics

While there isn’t room here to cover all the academic aspects of college (entire books exist for that!), you should consider a few things. First, as we already mentioned, it’s important, when you’re researching schools, to find out what services are available for students with specific learning requirements.

Second, we’d like to remind you (and your parents) that this might be a good time to schedule a neuropsychological evaluation. A neuropsych evaluation can help pinpoint your learning strengths and weaknesses, and even help you choose which sorts of classes or departments might be a good fit for you.  Contact SBHI or your SBHI Family Support Worker for more information.

Conclusion

Congratulations! Having made it through all this, you’re practically an expert on college your­self—and your knowledge is about to increase exponentially. As more and more young people with Hydrocephalus come of age and start to live independently, more and more resources and information will become available to them. You can be part of this process: your feedback—your willingness to share your hard-won knowledge with us and with those coming after you—will help us pro­vide more resources like this one and help future students, just like yourself, take their first vital steps toward independence.

A Note to Parents:  All children have the right to independence. They have the right, as they mature, to find out who they are, to explore the world, and to establish a life separate from their parents’. However, as a parent, you will always worry about your children, whether or not they have Hydrocephalus. It’s important, however, that you not let your natural instincts overwhelm your kids. As one mother said, “If you do freak out at the thought of your child going away, do it in private.”

Helping our children reach independence is an ongoing process, and chances are that most of us won’t get it 100% right. But we can support our children and give them tools that will enable them to take responsibility for themselves. We can then stand back, keep our mouths shut, and let them have a go at it.

 

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