Assistance for Children with Spina Bifida

SPINA BIFIDA

Spina bifida is a condition which affects about one in every 1000 children born per year in Ireland. According to Enable Ireland, Ireland has one of the highest incidences of spina bifida births in the world.  

Spina Bifida is a term which describes a set of birth defects that impact on the development of a human being’s central nervous system and spine. (www.hse.ie). According to the Health Service Executive, the central nervous system is made up of spinal cord, nerves and the brain. The spinal cord runs right through from the brain to the rest of the body and is made up of nerve cells and bundles of nerves which links the brain to each part of the body.  

During the first month after conception, according to the HSE, an embryo developes a tissue structure which is called the neural tube. As the embryo develops, this neural tube starts to grow into a more complex structure of nerves, tissue and bones  which eventually forms the nervous system and the spine.

Where spina bifida occurs, something goes wrong when the neural tube is developing and the spinal column (the ridge of bone that surrounds and protects the nerves) does not close fully. Spina bifida is a Latin term that means split spine (www.hse.ie). 

Spina bifida is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord in the womb.   (www.enableireland.ie). 

Causes of Spina Bifida

According to the Health Services Executive, the causes of Spina Bifida are not known but it is agreed, according to the HSE, that it is probably a result of a combination of factors, including genetic or inherited, nutritional and environmental factors.  A number of risk factors have been identified including:

1) One of the most significant risk factors for Spinal Bifida is not having sufficient folic acid during pregnancy.  Folic Acid occurs naturally in foods including peas, brown rice and brocolli.  Folic Acid supplements are available from health stores, supermarkets and pharmacies.  According to the HSE, taking enough folic acid before conception and during pregnancy can prevent up to 70% of neural tube defect cases including Spina Bifida. 

2) If a mother previously gave birth to a baby with Spina Bifida, the risk of this mother having more children with Spina Bifida is increased slightly.  According to the HSE, there is a 5% chance that other babies born that that mother will also have Spina Bifida. 

3)  Some medication has been linked with an increased risk of birth defects including Spina Bifida.  These include lamotrigine, valproate and carbamazepine, which are used in the treatment of epilepsy and mood disorders, including bipolar disorder. 

4) Women who suffer from diabetes, caused by too much sugar in the blood, have an increased risk of having a shild with Spina Bifida. 

5) Women who are obese (having a body mass index – BMI – of 30 plus) have an increased risk of having a child with Spina Bifida.  The higher the BMI, the greater the risk.  According to the HSE, it is thought that women whose BMI is 40 plus are three times more likely to have a child with Spina Bifida than a woman who is a healthy weight.

Types of Spina Bifida

According to the Health Services Executive, there are different forms of spina bifida, which include:

• myelomeningocele
• spina bifida meningocele
• spina bifida occulta

The severity of spina vifida myelomeningocele is usually dependant on:

1)   The location on the spine where the opening is.  If the opening is at the top of the spine, it is much more likely that the lower limbs of the person are totally paralised and that they also have other difficulties with  their mobility.  This is when compared to those who have openings at the base or in the middle of their spine. 

2)   If the baby has also hydrocephalus (which is excess fluid on his/her brain), it is likely to result in the child having learning disabilities. 

Characteristics of Spina Bifida

According to the HSE, Spina bifida can result in a wide range of symptoms which can be categorised into three general groups: 

• cognitive symptoms which can include difficulty with reading or with problem solving. 
• mobility symptoms, which can include muscle weakness and paralysis.
• bladder and bowel symptoms, which can include urinary and bowel incontinence.

Cognitive symptoms

The development of the brainis also impacted by the neural tube defects.  The main part of the brain (the cortex) may not develop in the way that it should.  This results in a number of problems with cognitive functions including language processing and physical co-ordination.  If hydrocephalus is also present, it can put too much pressure on the brain which can result in further damage to the brain.  According to the HSE, approximately 6 in every 10 children who have spina bifida have normal intelligence but a little in excess of 50% of these will have some form of learning disability.  The HSE describe a ‘learning disability as a condition that affects how someone learns, understands and communicates’.

Some of the specific learning disabilities which children with spina bifida may have include:

• Difficulties with physical and visual co-ordination, e.g. tasks including fastening buttons or tying their shoelaces.
• A short attention span.
• Difficulty reading
• Difficulty making detailed plans or organising activities.
• Difficulty solving problems.
• Difficulty understanding cause and effect or logic.
• Difficulty understanding some language e.g. where a group of people are speaking quickly or having a fast conversation. 

Mobility symptoms

According to the HSE, all the muscles in the body are controlled by the brain with the nerves that run through the spinal cord.  Where these nerves are damaged, this can result in difficulties controlling the muscles.   The majority of children who have spinal bifida experience a degre of paralysis in their lower limbs.  This can result in the child needing to wear a leg brace or use a walking cane in order to assist with their mobility.  Where a child has total paralysis, they will need to use a wheelchair.  

There are other problems associated with paralysis e.g. where the leg muscles are not in regular use, they can become seriously weakened which can affect the development of the bones. 

This restricted bone development can result in:

• Scoliosis – abnormal curvature of the spine.
• Misshapen bones.
• Dislocated joints.

(www.hse.ie).

Bowel and bladder symptoms

In addition to controlling limbs, the nerves which run through the spinal cord also control the muscles of the sphincters which are located in the  a bladder and bowel.  These sphincters squeeze closed to keep stools and urin in and then they relax to allow stools and urine out.  The majority of people who have spina bifida have limited or no control over their sphincter muscles and accordingly experience bowel and urinary incontinence.  Urinary incontinence may result in a constant slow dribble of urine from the bladder (www.hse.ie).   Where a child has bowel incontence, they can experience times when they are constipated and this can be followed by diarrhoea or soiling. 

Assistive Technologies, Physical Aids and Medical Aids specific to Spina Bifida

Every child with Spina Bifida will have different needs and require different supports.  The aim of the supports is to increase the independence of the child.

Mobility Aids

It is very important for all children to be physically active, particularly children with Spina Bifida.  Mobility and physical activity assists with the child feeling part of the class at school. 

Physical activity assists with:

• Maintaining and developing flexibility
• Improving cardiovascular fitness
• Improving self esteem
• Prevents constipation
• Helps in the achievement and maintenance of a healthy weight
• Improves mood and assists relaxation
• Improves posture
• Builds strong bones and muscles
• Improves coordination and balance
• Promotes healthy development and growth

Wheelchairs

A wheelchair is a chair with wheels.  Children will normally be prescribed with a wheelchair when they are three to four years old to enable them develop good wheeelchair skills before they commence school.  Wheelchairs may be needed for some or all of the day.  A wheelchair provides a child with the ability to be mobile.  A wheelchair assists a child with spina bifida to integrate and be part of the class as they can  sit at a desk, move around the classroom and the school yard and keep apace with the other children.  This facilitates integration.

Walking Frames

A walking frame  is a frame with wheels which supports a childs weight and assists the child’s mobility. A walking frame assists the child  to maintain an upright posture as well as increased the child’s confidence in their mobility.  It helps the child interact with their family and friends and helps the child participate in play at school.  Using the walker improves bladder and bowel function and assists in the development of bones and joints and strong and supple muscles.  The child can communicate face to face at the same level with other children and this improves the confidence of the child and facilitates integration.

Move and Sit Cushion

A Move and Sit Cushion is an inflatable wedge seat which is used for dynamic seating.  It assists in decreasing fidgeting and increases concentration in the classroom.   These air cushions are versatile and provide effective seating for any child who finds it difficult to stay put and for the child who needs to incorporate movement and requires stimulation but also needs to be part of a class.   What makes the move and sit cushion special is that it is easy to adjust the amount of air that is put into the cushion.  The cushions can be washed with water and soap.  It really suits the classroom as it allows the child to move while sitting and at the same time and helps the child to sit in a good position for their posture. 

KEYBOARD WITH LARGE KEYS

Children who have limited hand function benefit from using a keyboard with larger keys.  The keys can be up to 1” square and the text is clearly marked and is up to 111 times larger than the text found on a regular keyboard.   As the design of the big keys keyboard is based on the design of a standard keyboard, there is no special software required and it plugs straight into the standard computer.   The special keyboard is ideal for children wo have motor difficulties and as the keyboard is designed to be uncluttered, it is also very suitable for pupils who have cognitive difficulties. 

SPECIAL MOUSE

Children who have limited hand function will also benefit from a special mouse to operate a computer. 

The special mouse is easy to use and enables the child to use the computer more easily.  This improves participation in class and involvement in learning.  The high contrast in colours on the mouse make it attractive and fun to use. 

ROLE OF THE SNA WORKING WITH A CHILD WITH SPINA BIFIDA

According to the Department of Education and Skills, as per Circular 0030/201, the ‘Special Needs Assistant (SNA) scheme is designed to

provide schools with additional adult support staff who can assist children with special educational needs who also have additional and significant care needs. Such support is provided in order to facilitate the attendance of those pupils at school and also to minimise disruption to class or teaching time for the pupils concerned, or for their peers, and with a view to developing their independent living skills.’

Special Needs Assistants (SNA’s) undertake a significant role in assisting teachers to support and help students with special educational needs who have significant care needs. 

The SNA will:

1. Meet the child and assist the child to board and alight from the school bus and escort the child from the gate to the school. 
2. Assist the child with taking off and putting on his/her coat and shoes/slippers.
3. Accompany the child when eating their lunch. Assist the child when necessary ensuring that the child is clean. 
4. Assist the child with toileting.
5. Assist the child with typing and/or writing. Tape the alphabet and a number guide to the children’s desk for easy reference.

6. Assist the teacher in the supervision of the child in the course of recreation periods whilst ensuring that the child is integrating with the rest of the class, structuring play activities to develop integration skills. 
7. Accompanying the child during out of school walks, tours and sports games.
8. Accompanying the child when taking classes outside of the classroom e.g. with resource teacher.
9. Assist the child in administering medicine , as required.
10.                    Use reward systems such as star charts – be clear about required behaviour and use lots of encouragement and rewards when the required behaviour is being displayed.

EDUCATIONAL OPTIONS AVAILABLE FOR THIS CHILD WITH SPINA BINIFIDA

EPSEN Act 2004

The Education for Persons with Special Educational Needs (EPSEN) Act in 2004 provided that ‘children with special educational needs should be educated, wherever possible, in an inclusive environment with children who do not have special educational needs’. 

The EPSEN Act recognises that special educational needs may arise from four different areas of disability:

• physical

• sensory

• mental health

 • learning disability

Whilst children with Spina Bifida have physical constraints up to and including total paralysis, they may also have learning difficulties.  The key message in the EPSEN Act is that children with special educational needs should be educated, wherever possible, in an inclusive environment with children who do not have special educational needs. (National Council for Special Education).  The EPSEN Act brought this message into law.  The EPSENAct further strengthened this by bringing into law  the requirement to assist children with special educational needs to leave school with the skills necessary to participate, to the level of their capacity, in an inclusive way in the social and economic activities of society and to live independent and fulfilled lives.

Whilst children with Spina Bifida can attend special schools or attend special classes which are attached to mainstream schoold, they can also be integrated into mainstream classes. 

The EPSEN Act outlines the duties and responsibilities of the Boards of Management of Schools and the responsibilities of principal teachers regarding the providion of education for children with Special Educational Needs. 

The Education Act (1998)

The Education Act (1998) legally obliges schools to provide for a diversity of needs, values and traditions.  A key element of the Act specifically refers to the provision for education of persons with disabilities or with special educational needs.  Under this act, schools must utilise their resources to ensure that the educational requirements of whildren with disabilities or other special educational needs are both identified and provided for.  Schools and Boards of Management are obliged to utilise the resources provided to them by the state in order to make reasonable accommodation and provision for learners with disa bilities or other special educational needs. 

The Act outlines the responsibility of the Minister for Education and Skills to ensure that children with disabilities or other special educational needs are in a position to avail of support services and a quality of education appropriate to their abilities and needs.  Such support includes:

• Transport
• Technical equipment and aids
• Buildings adaptations to facilitate access
• Both early childhood and continuing education
• Assessment, psychological guidance and counselling services. 

Whilst not all children will be suited to attending a mainstream setting, I am of the view that where at all possible, a child with spina bifida with assessed mild to medium special educational needs should attend mainstream school.  I would also consider a special unit attached to a mainstream school to be appropriate for the child, provided the children are integrated regularly throughout the day.

I believe the mainstream schooling provides the child with SEN with the opportunity to develop and practice social skills and to grow up with their peers.  This integration facilitates  enhanced inclusion and acceptance into general society. From an educational perspective, as the child progresses through mainstream, they are being exposed to the same curricula material as their peers and whilst they may receive modifications to the curriculum, they are still being exposed to and learning the same as what their peers are learning.  This helps to build the self esteem of the child with SEN.  It also teaches all students to be more compassionate, to be more accepting, to collaborate more, to be more patient, which are life skills that can only lead to a better society.

ACTIVITIES APPROPRIARTE DEVELOPMENTALLY FOR A CHILD WITH SPINA BIFIDA

REWARD SYSTEM

I have selected a Reward System as one of the activities which would enable a child with Spina Bifida to integrate within the class whilst also developing his/her social skills, forming friendships and language learning. 

The reasons I have chosen a Reward System is:

1. A Reward System could be designed in conjunction with the entire class to ensure buy in from all the class. This promotes inclusion.
2. The Reward System could be very visible and all of the class could see how achievement towards the reward is progressing. This promotes integration and inclusion.
3. The Reward System would reward good behaviour and also good work.  This increases learning and improves behaviour.
4. At the start of the school year brainstorm what makes a good SNA and a good student. This gives the children the opportunity to think about what they need to do and what the SNA needs to do for a positive relationship to work. This sets out the basis for the ground rules.  This promotes positive behaviour.
5. Marbles in a jar is perfect for getting the class to work together. Use a large jar and mark it off at even intervals – when the class reach an interval they get a reward from the teacher e.g. Night off homework, Make rice-krispie buns  Do not leave the interval too long to ensure that the children can experience the reward quickly which will motivate them towards the next reward. This promotes teamwork, inclusion  and integration. 
6. Consistency – if there is a rule then that rule should apply to all children equally.  This ensures integration.
7. Post the classroom rules in a central location in the classroom, children love rules. This promotes good behaviour.
8. Post the ‘Star’ Chart/Marble Jar in a central location beside the Classroom Rules.  This promotes good behaviour.
9. The child with Spina Bifida will have equal opportunity to contribute to the team effort both through their behaviour and their work output.  This promotes inclusion and integration.
10.                      Kindness towards each other should be included as one of the foundation stone rules and should attract a double reward. This promotes forming friendships and inclusion.

BIBLIOGRAPHY

• www.hse.ie   (Accessed 24^th October 2018)
• www.enableireland.ie  (Accessed 3^rd November, 2018)
• www.nhs.uk  (Accessed 2^nd November 2018)
• https://www.european-agency.org/country-information/ireland/legislation-and-policy (Accessed 1^st November 2018)
• National Council for Special Education Booklet 
• Children with Special Educational Needs Information Booklet for Parents Published in April 2014