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The information on this website does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBHI advises readers to consult a qualified medical or other professional on an individual basis.
FIT FOR LIFE
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Preparing your child for their future
Making Choices
Beginning in the early years, provide regular opportunities for your child to make choices, problem solve, and even make mistakes. This may be simple occurrences such as the pre-schooler choosing their clothes for the day, the 10-year old choosing their room decorations. When children have opportunities to practice making choices, recognising successes, and identifying problems with their choices and options for solving them they become more equipped to function independently and interact with others.
Access to Social Opportunities
Individuals with Spina Bifida should be given access to the same social opportunities that are available to their peers. This can be accomplished by providing age-appropriate experiences to include interactions with others in social situations, both in and out of school, and offering opportunities to participate in community activities such as play groups, scouting, volunteering, clubs, camps, church activities, and classes. These are venues through which individuals with Spina Bifida can identify and build on their personal strengths and thereby increase self-esteem and confidence as well as opportunities to practice social skills. These activities can also provide alternate learning opportunities for children and youth who may have a hard time with the “ABC’s” of school.
Equipment
As early as possible, begin teaching your child about his/ her adaptive equipment such as how to breakdown, transport, and set up their wheelchair enabling them to be independent and socialise with their peers.
Develop Interests
Provide opportunities for the child with Spina Bifida and Hydrocephalus to develop interests and make choices regarding their hobbies and other recreation activities, such as fishing, visiting museums, music, dance, art, and sports. The child’s interests and preferences will change over time, which is a normal part of growing up.
Whatever their interest, each experience will provide ways for the individual to develop friendships with peers who have similar interests and to build self-esteem. These experiences will give children, teens, and young adults with Spina Bifida the opportunity to demonstrate and develop social skills and to develop a sense of identity and belonging.
Exercise
During the early years through the teen years, families can encourage and participate in regular exercise and physical activity for themselves and the child with Spina Bifida. Physical activity can help to increase strength, dexterity, and balance all of which can improve the skills needed for dressing and transferring.
Advocacy
Become knowledgeable about the Disability Act and the EPSEN. Knowledge of this act can enable families to advocate for themselves and/ or their child regarding access to the environment and participation in all aspects of community living. Families are often their child’s best advocate and can be great role models for teaching these skills. However, it is essential to also provide opportunities throughout the primary school for the child with to learn about his/ her rights and to practice advocating for him/ herself so that the child can grow towards independence.
HELPING YOUR CHILD UNDERSTAND SPINA BIFIDA
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The following information should be seen as a guide. It offers simple answers to questions young child may ask and activities which can be used to help your child better understand Spina Bifida and explore new ways to enrich their lives. The information and activities can be used to help you open and guide discussion with your child about issues such as movement, bathroom routines, exercise, physical activity, diet and scars all of which are important for your child’s sense of self.
Talking to your child about Spina Bifida
When talking to your child about Spina Bifida remember:
- It’s OK to say “I don’t know” to a question from your child. Reassure them that their question is important and that you will get help to find the answer.
- It’s OK if you can’t find the words to use, you will have more than one chance to talk about these things
- It’s OK if your child asks the same question a few times. Most children need to do this before they understand a complex condition like Spina Bifida.
- It’s OK and encourage for you and your family to seek support from others, such as Spina Bifida Hydrocephalus Ireland (SBHI), your SBHI Family Support Worker, other parents, others with Spina Bifida, doctors, therapist etc.
Typical questions, complaints and concerns your child may raise and suggested replies may include:
What is Spina Bifida?
“Spina Bifida is a medical condition you were born with. When you were in Mummy’s tummy, part of your back didn’t grow the way it should have. This can make it hard for you to go to the toilet and to use your legs. Nothing that you, Mummy or Daddy did caused Spina Bifida. No one knows exactly how it is caused”.
Will I always have Spina Bifida?
“Yes, you will have Spina Bifida all your life. This means you may need to use something to help you get around like your wheelchair or your walker or crutches and you will need to pay attention to how you use the bathroom.”
Will people love me?
“That is a very good questions and easy to answer. Yes! They already do!”
Movement
Young children have a strong natural curiosity about visible differences. Your child may ask why their movement, legs and feet may be different than other children. After providing answers, explore how your child’s moves can have hidden gifts.
Online Worksheet:
Equipment I Use
http://www.myspinabifidabook.org/Activities/Activity_Eng_1.html
Why can’t I walk like other children?
Your back was made differently, so you may not feel your legs and feet the way they do. This can make it difficult for you to walk. You may use a wheelchair, walker, crutches or calipers to move around.
Why do I move differently than other children with Spina Bifida?
Just as children can have different colour eyes, they can have different kinds of Spina Bifida. There are many types of Spina Bifida. The kind you have determines how you move and what equipment you use to get where you want to go.
Why are my legs and feet small?
Legs and feet need to move a lot to grow. Because you only move yours a little they stay small.
Bathroom Routines
Your child may be self-conscious that they use the bathroom differently than other children do. To help address this concern, explain why particular supplies and routines are needed and together develop playful ways of coping.
Online Worksheet:
Bathroom Equipment I Use
http://www.myspinabifidabook.org/Activities/Activity_Eng_2.html
Why do I use the bathroom differently?
Because your body was made differently, it can’t tell you when it’s time to wee or poo. So you use other ways to go to the bathroom. You wear pads and catheterise. This is how you help you body to not have accidents.
I don’t want to wear pads. My friends don’t. It’s not fair.
It sounds like you are feeling mad and sad. That’s okay. I’m glad you told me. Your friends don’t wear pads because their bodies can tell them when to wee or poo. You may be able to wear only underwear, when you are older. Would you like to wear underwear over you pads right now?
I want to hide when I have to ask for help to go to the bathroom.
I’m glad you told me how you’re feeling. Let’s try and change how you’re feeling together. There are different ways you can let grown-ups know it’s time for you to go to the bathroom. You can say ‘I need help’, use a secret code or make a hand signal, like waving or do a thumbs up.
Exercises
Your child will need support to do stretches and wheelchair push-ups regularly. To help establish a routine, explain why exercises are important and make them fun.
Online Worksheet:
Exercises I Use
http://www.myspinabifidabook.org/Activities/Activity_Eng_3.html
Why do I have to do my exercises?
Exercises can make it easier for you to move and wheelchair push-ups will help protect your skin from sores when you sit too much. Exercising is very important!
I don’t want to do my exercises!
I know it’s hard, but exercises need to be done every day. Let’s make this a special time! You can colour, do a jigsaw or play a game. What favourite things would you like to do while you exercise.
Physical Activities
All children need physical activity. Encourage your child by explaining how this makes their body stronger, going to the bathroom easier and offers new ways to play with friends. Then, ask your child to choose which of the following they would like to try first.
Suggested Activities To Help Your Child:
Indoor
- Ask your child to draw themselves playing their favourite sport
- Use magnetic letters to form words high up on your fridge door
- Stretch up to “draw” on the bathroom mirror with shaving cream
- Creating treasure hunts around your home
- Finger painting or colouring on paper taped to the wall
Outdoor
- Taking a dog (a neighbours if your family doesn’t have one) for a walk – supervised by an adult
- Flying a kite
- Watering the garden
- Playing Tag
- Creating an obstacle course
A suggested obstacle course for your child and their friends could include weaving between three empty 2 litre milk containers, going under a towel hung between a window sill and a chair and tossing a Frisbee into a cardboard box.
Diet Tips
Healthy eating is important for children. Your child will also need to learn what foods and drinks help prevent constipation. To help your child make better decisions when choosing food and drink, explain why these are important, acknowledge their cooperation and have fun with food presentation.
Online Worksheet:
Foods that help me poo
http://www.myspinabifidabook.org/Activities/Activity_Eng_4.html
Why do I have to eat so many fruit and vegetables?
Eating fruits and vegetables and drinking lots of water helps your body poo. Without these you get constipated. Being constipated is when your poo is hard and can make you feel sick and have tummy aches.
Try the following food sculptures, or make up some of your own
To make a robot, cut a pear in half, from top to bottom. Use raisins for feet and nose, whole wheat cheerios for the eyes and mouth and dates for the arms.
To create a butterfly, cut a low-fat cheese or chicken sandwich on whole grain bread into two triangles. Add a carrot for a body and celery sticks and tomatoes for the antennae.
To make a spider, spread low-fat peanut butter on a whole wheat cracker for the body, add eight pretzel sticks for the legs and two raisins for the eyes.
Scars
Children don’t like to be different. When a child has a scar and it’s noticeable, it may attract unwanted attention and comment. Support your child by helping them to recognise and express their feelings about having scars.
Online Worksheet:
Scars are my medals
http://www.myspinabifidabook.org/Activities/Activity_Eng_5.html
“Scars are medals made of skin that show you have been very brave”
Ask your child how they feel about their scars. Remember you do not always need to respond or discuss. You can simply listen and then repeat, in your own words, what your child has just said. This will encourage your child to continue to talk freely and openly.
Ask your child to think of other people who might also have scars. Realising that professional athletes, teachers and garda may have scars from accidents or operations may help him understand that it is quite common to have a scar.
Sew “scars” onto your child’s favourite stuffed toy. It can help provide comfort, self-acceptance and discussion about looking different and having scars.
10 COMMANDMENTS FOR PARENTS
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1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
2. Never underestimate your child's potential. Allow him, encourage him and expect them to develop to the best of their abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humour. Cracking up with laughter can keep you from cracking up from stress.
HYDROCEPHALUS STRATEGIES FOR LIVING YOUR BEST LIFE
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Improving Executive Functioning
The term executive function describes a set of cognitive abilities that control and regulate other abilities and behaviours. Executive functions are necessary for goal-directed behaviour. They include the ability to initiate and stop actions, to monitor and change behaviour as needed, and to plan future behaviour when faced with novel tasks and situations. Executive functions allow us to anticipate outcomes and adapt to changing situations. The ability to form concepts and think abstractly are often considered components of executive function.
Executive functions are important for successful adaptation and performance in real-life situations. They allow people to initiate and complete tasks and to persevere in the face of challenges. Because the environment can be unpredictable, executive functions are vital to human ability to recognize the significance of unexpected situations and to make alternative plans quickly when unusual events arise and interfere with normal routines.
Tips which can help improve executive functioning
- STRUCTURE
- Set goals, then break these down into small tasks.
- Use checklists
- Structure the day by writing a plan of tasks you need to do and the time frame. Include all activities
Managing Emotional and Behavioural Difficulties
Emotional or behavioural difficulties can impede or distort personal development and affect relationships, causing distress to the person with Hydrocephalus, their family or community.
Emotional or behavioural difficulties occur most commonly when the frontal and temporal lobes have distorted due to the Hydrocephalus. The frontal lobes or connected pathways in the teenage years may lead to irritability, anxiety, over sexualised behaviour, poor social responses, increased risk-taking behaviour, failure to inhibit responses, and poor self-monitoring.
Tips which can help improve emotional & behavioural difficulties
- Structure and Routine
- Exercise
- Diet
- Medication (where appropriate)
- Psychological Intervention/ therapy (where appropriate)
- Encourage the person to seek support from family/friends when necessary
- Support can also be sort from your SBHI Family Support Worker
Improve Information Processing
Information Processing is a person’s ability to take in information e.g. instructions or directions. When we deal with information, we do so in steps. One way to think of this is to picture the process of acquiring, retaining, and using information.
For example when checking into a hotel we are given a number of instructions, information and directions all in one go. “Your room is 201, it is on the second floor, the lifts are to the left of reception and breakfast is in our restaurant which is on the 4th floor. Have a lovely stay”. If you have difficulties processing information you may well be thinking, yes I will have a nice stay but since I can’t remember anything you said before “have a nice stay” it might not be that great. Now is what floor is my room on?
Tips which can help improve information processing
- Pacing – Ask people to slow down when giving instructions or during conversation or ask them to write it down
- Timing - Develop awareness of the best times to complete more complex activities
- Write lists or notes
- Check and re-check your work
- Use paper to break up information on a page so as to avoid overloading
- Use index cards to summarise information
- Underline key words or phrases in instructions
- Work in periods of 20-30 minutes with short breaks in between
Improve Attention Span
Attention span is the amount of time a person can concentrate on a task without becoming distracted. The ability to focus one's attention on a task is crucial for the achievement of one's goals.
Tips which can help improve information processing
- Minimise distraction
- Time management – plan a programme of activities ahead of time.
- Where possible allow preparation time before making a transition to a different activity or place
- Pacing – distribute the activity over a period of time, including frequent breaks
- Rehearsal – Repeat what someone has said in your own words i.e. ‘ let me repeat this to you to see if I have it’
- Use cues and prompts – cue the person that what you are saying is important, colour code timetables
- Write down anything you feel might confuse you or you might forget
- Chunking – break complicated tasks into smaller, carefully arranged steps
- Finish one activity before starting another
- Sequencing – sequence tasks from simplest to most complex
Improve Personal Insight
Personal insight is the ability to clearly see and instinctively understand the nature of a person, situation, or subject. It is also the ability to be self-aware by seeing and understanding personal strengths and weaknesses and the ability to find solutions to these weaknesses.
Tips which can help improve information processing
- Ask for feedback from friends and family
- Attend activities/groups where you can meet others with similar difficulties – learn from them
- Read books, leaflets and other information about Hydrocephalus
- Watch yourself on video
- Make mistakes and fail, but learn from those mistakes and failures
- Ask to be sent medical letters and reports
- A neuropsychological assessment can be helpful in highlighting strengths and difficulties and in tailoring appropriate rehabilitation interventions
Teen talk - hydrocephalus transitioning
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Hydrocephalus – A Healthcare Transition Guide for Teens and Young Adults
In recent years, the majority of children with chronic medical conditions, including Hydrocephalus, have been receiving their medical care in a paediatric-centred environment. Ideally, that care is family centred, continuous, coordinated and compassionate. For children with Hydrocephalus and their families, the neurosurgeon often becomes the health-care team leader, intimately involved in directing care from the time of initial diagnosis well into young adulthood. It is not surprising, then, that you and your parents have come to expect that comprehensive, compassionate neurosurgical care will continue into young adulthood and beyond. Realistically, however, paediatric-focused neurological care ends at 16, and ready or not, the challenges can be considerable if transition plans have not been put into place. The goal for all children, whether or not they have a chronic medical condition or a disability, should be to move progressively from dependence toward independence, gathering life skills that promote healthy self-esteem and self-sufficiency. All children need to be encouraged to develop attitudes, skills and knowledge that empower them to control, as much as possible, their own destiny.
As your parents encourage your move to independence, they must be willing to let go of their control, allowing you to make mistakes and encouraging you to use problem-solving skills to cope with challenges. Fostering opportunities, even at a very young age, to develop self-confidence, self-esteem, and feelings of value by others, determination and a positive outlook will ease your way, preparing you for your transition to adulthood and a more independent lifestyle.
To read and print the full document “Hydrocephalus – A Healthcare Transition Guide for Teens and Young Adults” click here
TEEN TALK – Friends and Relationships
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We all have different personalities: you may be a party person with lots of friends and good at chat or maybe you’re a quiet sort of person who likes your own company or feels happier doing things with family than being out with your classmates.
Making friends might be harder because of...
...some of the things that have happened in your life
- Maybe you’ve spent a lot of time ill or in hospital
- Maybe you’ve spent a lot of time with adults and feel safer with them
- You may have gone to a special school or an accessible school at a distance from where you live
- Maybe your family have protected you so that you didn’t get the same chances to try things out and take risks like your brothers and sisters
- If you’re a wheelchair user you might not have been able to access the same places as your friends or, if your mobility is poor, you might not have been able to keep up with them out in the street or in the park. You might not be able to join in all the school activities that you’d like to
- You might have had a lot of people talk about the things you can’t do rather than the things you can
- You might have had people talk about your body and poke and prod it until you feel it’s not your own
- You may need someone to help you with personal care when you’re out of your own home
- You may have a special needs assistant always at your shoulder when you’re in school!
Some people with Hydrocephalus find it hard to imagine how their friends tick and feel a bit different. Having a disability might make you feel different, shy or withdrawn; or you might feel angry.
- Some young people say they feel they’re neither “properly” disabled like wheelchair users nor able-bodied and are not sure they fit in anywhere.
- Maybe you feel self-conscious about how you look or about having difficulties with your bowel or bladder
- Maybe you feel people see your Spina Bifida or Hydrocephalus first instead of seeing the real you.
- You might feel you have all the same mixed-up feelings as most teenagers and then some extra ones to deal with
So how do I make friends?
- Be interested in other people and what they’re doing. Good relationships are about caring and sharing
- Be a good listener as well as a good talker
- Find an activity you enjoy and can share with other people
- Think about your social skills. Do you throw a tantrum when things don’t go your way, or turn sulky? Do you think the world should revolve around you?
- Think about how you present yourself. Do you choose your own clothes or do you let your mother do it? Do your brothers and sisters let her choose theirs? It can be hard finding things to fit if you have Spina Bifida and you might desperately want to wear fashionable shoes but not be able to… but lots of people with a disability do look trendy, have good haircuts and make up - or dress like their Goth or biker friends and horrify their parents.
- Make sure of your personal hygiene especially if you have difficulties with bladder or bowel management: this is a real problem for some people with Spina Bifida and is a great turn-off with your friends or in school or the workplace. If you’re one of the people who won’t catheterise when you should, wet the car seat or don’t get changed when you’re soiled, think what you’re saying about yourself to the world.
- Find yourself some role models. We can’t all be Tanni Grey-Thompson but you might be that girl down the road driving off to see her favourite bands all over the place or the lad with a fantastic sense of humour.
TEEN TALK – Bullying
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Bullying can be a problem for lots of young people but especially for those of you who have a disability or have some learning difficulties.
Bullying can take lots of forms:
- name calling
- fighting, pushing, kicking
- teasing, making fun
- being sent nasty text messages or phone calls.
- being ignored or left out or having your friends taken away from you
- stealing personal items
- swearing
- people making things up about you
Bullies target their victims for many reasons such as weight, appearance, intelligence, disability, sexuality, religion or culture. Some may have had people make comments on the shape of your body or how you walk. You may have had people try to tip your wheelchair or move you in it without asking your permission first.
People with Hydrocephalus can sometimes get really hurtful remarks about the size or shape of their heads. People may make fun of you because you may be so quick to understand jokes or take longer to learn. You may not feel safe and secure with people in your own school year but happier with younger children or with adults. You may not want to go to school or out on the street where these things happen
What can you do if you are being bullied?
The most important thing is to tell someone straight away. You might be scared that this will make things worse but it won’t stop unless you do. If the bullying is happening in school, make sure you tell your parents as well as an adult in school.
Stay calm and look as confident as you can. It's difficult but try to make yourself look brave if something happens even if you really feel frightened. Be firm and clear, look the bully in the eye and tell them to stop.
- Try to use humour when you can
- Try to ignore hurtful comments. Bullies want to wind you up.
- Get away from the situation as quickly as possible.
- Don’t ever blame yourself, because no one deserves to get bullied.
- Don't fight back if you can help it.
- It's not worth getting hurt to keep possessions or money.
Try to avoid being alone in the places where you know the bully is likely to pick on you. Try to stay in safe areas of the school at break and lunchtime where there are plenty of other people.
If you are hurt at school, tell a teacher or helper straight away and ask for it to be written down. Keep a record of anything that happens or ask your mum or dad to do so.
To have friends, you also need to be a friend and you can do that by trying to be open and friendly with people and by being interested in them
Build up confidence in yourself. Look at your strengths, focus on those and don’t think of yourself as a weak person
TEEN TALK – Keeping Safe
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Travelling on Foot or by Wheelchair
Travelling on foot or by wheelchair is generally considered a safe means of travel, but the risks will obviously increase during hours of darkness and during winter months.
The following guidelines may help to minimise the risks.
- Think ahead, always be “alert” and aware of your surroundings.
- When possible, try to avoid walking or wheeling alone, especially during hours of darkness.
- Keep too busy and well-lit streets and roads.
- Avoid taking short cuts.
- Avoid poorly lit or little used underpasses.
- Walk or wheel facing the oncoming traffic and keep to the centre of the pavement.
- If a driver stops and you are suspicious, walk away in the opposite direction.
- Let them see that you are noting the car registration number and write it down.
- If you think you are being followed, cross and re-cross the street.
- Do not wait around unless you absolutely have to. Keep to busy well-lit areas and look positive and confident.
- Do not accept lifts unless you know and trust the driver and never hitch a lift.
- Consider carefully where and how you carry your valuables (eg if you carry a bag wear the strap across your chest) and be discreet when you use your mobile phone.
- Keep your hands free to defend yourself if necessary.
- Carry an alarm in your hand; it will be of no use in your bag or pocket.
- Try not to linger in areas where risk is increased (outside pubs, clubs, places where groups congregate).
- Do not lose your sense of awareness by wearing a personal stereo/radio or mp3 player
Travelling by Taxi
- Ensure that you have the telephone number of a reputable taxi firm. Ask your friends or student union who they would recommend.
- When booking your taxi, ask the company for the name of the driver they will be sending.
- If ordering a taxicab from a public phone or mobile try to avoid doing so where someone may overhear you giving your name and address etc. Anyone could shout “cab for Mrs Smith” so check the driver’s name on arrival.
- If possible share a taxi with a friend.
- Although you may not wish to appear unfriendly always sit in the back.
- If you do chat to the driver, do not give away any personal details.
- If you feel in any way uneasy about the driver, ask to stop in a busy and familiar area and get out.
- Try to have your money ready on arrival at your destination, leave the cab and pay the driver.
- When arriving at your home, have your keys out ready and enter quickly.
- Be aware of bogus taxis! Some people do not work for minicab firms at all but simply put an aerial on the roof, and have a fake handset. They then “cruise” for trade in busy areas and nightspots. They often get trade by shouting out ‘someone ordered a cab?’ At times when there is a shortage of transport it could be tempting. It is much safer to wait, for the correct cab.
USE YOUR COMMON SENSE - JUST THINK SAFETY FIRST!
TEEN TALK – Information for Boys
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Before you left primary school, you will have had a talk explaining the changes in your body that take place over a few years – you will probably have a growth spurt, you start to grow hair under your arms, on your face and around your genitals (sex organs), your sex organs develop, your voice gets deeper and you might have wet dreams.
You’ll know that, along with the changes in your body, there are often changes in how you feel. Maybe your mood will change suddenly from happy to sad…… or you’ll lose your temper and make everyone’s life a misery…….or you might stop being a chatty sort of person and turn into someone quiet who wants to be shut away in the bedroom listening to music and who grunts instead of talks.
To read and print the full document “Teen Talk – Information for Boys” click here
TEEN TALK – Information for Girls
This page is available in a printable PDF format for your convenience.
Before you left primary school, you will have had a talk explaining the changes in your body that take place over a few years – you may have a growth spurt, your breasts develop, you grow hair under your arms and in the pubic area, you start your periods. You’ll know that, once you start your periods, you are able to become pregnant.
A few of you might have had these changes earlier than usual and had to deal with periods even before you properly understood what they meant. Maybe you will have had some medication or treatment to manage this.
To read and print the full document “Teen Talk – Information for Girls” click here
SEX & SPINA BIFIDA – for Men
Sex and Spina Bifida can go together and many men with Spina Bifida are happy with their sex lives. This information is for those who may be having some difficulties. There’s a lot of general information out there for disabled people on general topics such as managing continence, positions for sex etc. and we won’t duplicate this information – see our Spina Bifida section for useful resources.
To read and print the full document “Sex & Spina Bifida for Men” click here
SEX & SPINA BIFIDA – for Women
Sex and Spina Bifida can and do go together and many women with Spina Bifida are happy with their sex lives. Others may have some worries and this information is for them. There’s a lot of general information out there for people with a disability on topics such as managing continence, positions for sex etc. and we won’t duplicate this information – see our Spina Bifida section for useful resources.
To read and print the full document “Sex & Spina Bifida for Women” click here
AGING WITH SPINA BIFIDA
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It's a known fact that the general population is getting older and most people - including those with Spina Bifida and/or Hydrocephalus will enjoy a longer lifespan than previous generations.
As intensive treatment and studies of Spina Bifida and Hydrocephalus did not really begin until the early 1960's, it is only recently that relatively large numbers of people with these conditions have been assessed.
When young people leave education and leave paediatric services, they often find that much of the responsibility for monitoring their general health lies with themselves.
Dr Gillian Hunt, who has studied Spina Bifida and Hydrocephalus for more than 35 years, told said: “One of the main priorities in caring for yourself is to keep appointments with your GP or hospital consultants.
“Even if you are quite well it is important to check blood pressure, urine and eyesight every year. When you see your doctor - even if it's about a minor ailment - ask them to check your blood pressure, which is also an indicator for kidney problems.”
One of the best ways to detect shunt problems is by having your eyesight checked by an optician. A squint is often symptomatic of intracranial pressure. The optician will also check the back of your eyes as well. Dr Hunt added: “Don't ignore headaches or neck aches - they may well be caused by intracranial pressure. Similarly, frequent headaches and sickness could be symptoms of shunt problems.”
People with Spina Bifida and Hydrocephalus experience the same issues as anyone else as they age, but they can be prone to a number of specific problems.
The effects of ageing for people with Spina Bifida may be expected to include weight gain, more pressure sores, blood pressure problems and reduced mobility.
Weight gain can be one of the most debilitating problems and is a major threat to health. Dr Hunt advised: “If you use a wheelchair you use far less energy than someone who is mobile. It is important to stick to a healthy diet.
“Weight gain affects not only the patients, but the carers too, as they can be worn out by the stress and strain of lifting a heavy weight. So it could mean that the weight gain could cause the patient to go into a care home. If you can stay slim, you will be more active and independent, and you'll have more fun,” she added.
Inactivity can lead to osteoporosis (brittle bones), so it's important to include foods rich in calcium and vitamin D in your diet. Skimmed milk and low-fat yoghurt are good sources of calcium, while exposure to sunlight provides us with an active form of vitamin D.
It is not uncommon for wheelchair users to report that their muscles tire more easily and they frequently experience significant bone and joint changes. They may have used certain muscle groups to the maximum over the years - but this shouldn't deter anyone from doing physical exercise, which does help to build strong bones and muscles, and also boosts psychological well-being.
Lead as active a life as possible, and try to get out and meet people. Ageing can be difficult for everyone, not just people with Spina Bifida and/or Hydrocephalus. But taking care of your health, and making sure you seek support when you need it, will help you to live a full and active life. Contact your SBHI Family Support Worker for advice and support.
EMPLOYMENT
Work is a central part of most peoples’ lives. Having a job is one of the most important ways people with disabilities can achieve independence and inclusion in society.
Do you want to make things happen? Would you like some support and more information on how to gain and retain employment?
If you are a job seeker, where do you start? Do you have a career plan? Do you know how to present and sell yourself in interview? Do you know how to deal with a disclosure that you have a disability?
To read and print the full document “Employment A Guide for Your Future” click here
LEARNING TO DRIVE
This page is available in a printable PDF format for your convenience.
Drivers Assessment
Anyone with Hydrocephalus or Spina Bifida should have an assessment before spending a lot of money on lessons and a car. Hydrocephalus can affect driving ability (for example how to judge speed and distances, co-ordination, concentration etc.) and it is important to see if this is likely to be a problem. If you have Spina Bifida, you might need hand controls, different seating or a way of getting your wheelchair in and out of the car. The M.A.A.T.S Programme is a programme run by The Irish Wheelchair Association. The programme provides professional 'one to one tuition' for people who wish to learn to drive. Whether you are a total beginner or are returning to driving after acquiring a disability you can avail of driving tuition in an automatic and fully adapted car through our M.A.A.T.S programme
Prior to receiving tuition, all pupils undergo thorough assessment. Assessments normally take one to two hours and are carried out by Occupational Therapists and Driving Instructors. The Service also provides information on all aspects of motoring services, entitlements etc.
If you wish to avail of this service or need any information regarding this please ring us on (061) 313691 or call to our office at Unit 10 Docklands Business Park, Dock Road, Limerick, or visit the website www.iwa.ie.
Applying for a drivers licence
In order to avail of the Driving Tuition and Assessment service, people are required to be provisional license holders. All first time licence applicants are reminded that they are required to complete a theory test. This test is conducted at a nation-wide network of 41 different locations. The user-friendly computerised test caters for people with disabilities. All venues for the Theory Test should be wheelchair accessible. Some people, especially with Hydrocephalus, may find this difficult so ask about any extra help or time which might be available to you. You can do practice tests via Irish Motoring website http://www.irishmotoring.ie/theorytest/index.php?vtype=car.
For further information on the Theory Test visit www.dtts.ie
Selecting and Buying a Vehicle
Buying a major item like a car calls for many considerations; finance, model of car, automatic or manual etc. For a disabled driver attention to the specifications and features of a vehicle is all important for accessibility.
The information presented here has been gathered to support people when selecting and purchasing a vehicle. It is recommended that this information is drafted into a personal checklist. The use of a checklist would ensure that all driving / passenger needs are met prior to purchase i.e. that people can physically transfer in and out of the vehicle, vehicle controls can be used with ease etc.
Visit http://www.iwa.ie/services/advice.aspx for further information.
Vehicle Adaptations
People may require their vehicles to be modified in order for them to drive or to be carried as a passenger. Adaptations can be made to a vehicle to meet the needs of drivers and passengers with disabilities.
Visit http://www.iwa.ie/services/advice.aspx#adaptation for further information
Schemes and Entitlements
There are a number of schemes and entitlements available for drivers with a disability. For further information visit Entitlements on this page.
ENTITLEMENTS
Payments for Carers
Carers Allowance
This is a payment to people living in Ireland who are looking after someone who is in need of support because of age, physical or learning disability or illness, including mental illness. The Carer's Allowance is not payable to everyone, it is mainly aimed at carers on low incomes who live with and look after certain people who need full-time care and attention. Click here for more information Note: if you are in receipt of the Carers Allowance you will automatically receive the Respite Grant
Half Rate Carers Allowance
From 27 September 2007, the Carer's Allowance scheme will change to allow more people who are caring for another person get a Carer's Allowance payment. The change means, if you are getting certain social welfare payments and you are providing full-time care and attention to another person, you can keep your main social welfare payment and get half-rate Carer’s Allowance as well. Click here for more information. Note: if you are in receipt of the Half Rate Carers Allowance you will automatically receive the Respite Grant
Carer’s Benefit
This is a payment made to (PRSI contributions) insured persons in Ireland who leave the workforce to care for a person(s) in need of full-time care and attention. Click here for more information
Carers Leave
The Carer's Leave Act 2001 allows employees in Ireland to leave their employment temporarily to provide full-time care for someone in need of full-time care and attention. Since 24 March 2006 the minimum period of leave is 13 weeks and the maximum period is 104 weeks (was 65 weeks). Carer's leave from employment is unpaid, but you may be entitled to carer’s allowance or carer’s benefit, depending on your circumstances. Click here for more information.
The Respite Care Grant
The Respite Care Grant is an annual payment made to carers by the Department of Social and Family Affairs (DSFA) in Ireland. Click here for more information. Note if you are in receipt of the Domiciliary Care Allowance you will automatically receive the Respite Grant
Domiciliary Care Allowance
This is a monthly payment made to the carer of a child with a severe disability who lives at home. In order to qualify, the child must have a disability that is likely to last for at least one year. Click here for more information. Note: if you are in receipt of the Domiciliary Care Allowance you will automatically receive the Respite Grant
The Back to School Clothing and Footwear Allowance
The Back to School Clothing and Footwear Allowance (BTSCFA) is to help you meet the cost of uniforms and footwear for children attending school. The scheme operates from 1 June to 30 September each year. Click here for more information
Medical
GP Visit Card
GP Visit Cards can allow individuals and families in Ireland to visit their family doctor for free. Only the cost of visits to your family doctor is free; you must pay for prescribed drugs, medicines and other health services similar to others who don't have a Medical Card.
If you are granted a GP Visit Card you should also apply for a Drugs Payment Scheme Card if you don't already have one. Click here for more information
Medical Card
A medical card issued by the Health Service Executive (HSE) allows the holder to receive certain health services free of charge. To qualify for a medical card your weekly income must be below a certain figure for your family size. Cash income, savings, investments and property (except for your own home) are taken into account in the means test. Your children are also covered for the same range of health services. Click here for more information
Drugs Payment Scheme
Under the Drugs Payment Scheme, an individual or family in Ireland only has to pay €100 each month for approved prescribed drugs, medicines and certain appliances for use by that person or his or her family in that month. The amount is determined from time to time by the Minister for Health and Children. If you have a GP Visit Card or do not have a Medical Card you should apply for a Drugs Payment Scheme Card. Click here for more information
Long Term Illness
People with Spina Bifida, who are not already medical card holders, can get free drugs, medicines and medical and surgical appliances for the treatment of that condition. These are provided under the Long Term Illness Scheme. This scheme is administered by the Health Service Executive (HSE).
The Long Term Illness Scheme does not depend on your income or other circumstances and is separate from the Medical Card scheme and the GP Visit Card Scheme. Click here for more information.
Primary Medical Certificate
A Primary Medical Certificate is used for claiming certain tax concession. A child with a disability can apply for the Primary Medical Certificate and the parent can then avail of benefits. Senior Area Medical Officer (SAMO) attached to the local Health Service Executive office. To contact your local SAMO Click here for more information.
Equipment and Home Supports
Aids and Appliances
If you are a medical card holder, the HSE will help with the purchase costs of necessary medical and surgical aids and appliances (such as wheelchairs and walking aids). If you are do not have a medical card, you may get some assistance from the HSE if you are unable to meet the costs from your own resources and the aids and appliances are considered necessary as part of treatment. If you have one of the conditions under the Long-Term Illness Scheme, you may also get assistance towards the purchase of costs of medical and surgical appliances for that condition. To contact your local Health Care Centre Click here for more information.
Diet and Heating Supplements
Certain people who have special dietary needs and heating requirements can qualify for additional weekly supplements under the Supplementary Welfare Allowance Scheme.
People who are getting a social welfare payment or Health Service Executive payment and who satisfy a means test may get an additional weekly payment for heating expenses where they can show they have extra heating needs given their age or infirmity. Click here for more information.
Housing Adaptation Grant for People with a Disability
A housing adaptation grant is available where changes need to be made to a home to make it suitable for a person with a physical, sensory or intellectual disability or mental health difficulty to live in.
The grant can help you to make changes and adaptations to your home, for example, making it wheelchair-accessible, extensions to create more space, adding a ground floor bathroom or toilet and stair-lifts. In some cases, the provision of heating can be included but only under certain conditions, contact your local authority for more details. Click here for more information.
Household Benefits Package
If you satisfy a number of conditions, you may qualify for the Household Benefits Package. The Household Benefits Package is made up of:
- The Electricity Allowance
- The Natural Gas Allowance
- The Electricity (Group Account) Allowance
- The Bottled Gas Refill Allowance
- The Telephone Allowance
- The Free Television Licence.
If you have an electricity or natural gas supply, you must choose either the Electricity Allowance or the Natural Gas Allowance. The Electricity/Electricity (Group Account) Allowance cannot be paid at more than one address or at the same time as a Natural Gas Allowance. Click here for more information.
Home Care Support Scheme (previously Home Care Package)
The Health Service Executive (HSE) has responsibility for the delivery of public health community and home care supports at local level in Ireland. The range of services currently available to support those who could continue to live in the community as an alternative to long-term residential care, is being expanded by the HSE. One of these supports is the Home Care Support Scheme. Click here for more information.
Independent Living through Direct Payment
This is a payment made by the HSE directly to the person with a disability who wishes to live independently, but requires assistance from either a Personal Assistant (PA) or a Healthcare Assistant (HA). The person with the disability is responsible for employing the PA or HA and for assuming the terms and conditions of employment. For further information please contact your SBHI Family Support Worker.
Revenue
Aids and Appliances – Refund on VAT
If you live in Ireland and have a disability and as a result, need to use certain aids and appliances, you can avail of a refund of Value-Added Tax (VAT). People with both physical and mental disabilities can avail of these VAT refunds. Click here for more information.
Allowances for Employing a Carer
A tax allowance for up to €50,000 (at the top rate) is available when you employ someone to care for a person with a disability. Click here for more information.
Incapacitated Child Tax Credit
This tax credit can be claimed by a parent/guardian of a child in Ireland who has a permanent condition, either physical or intellectual. Click here for more information.
Home Carer’s Tax Credit
This is a tax credit given to married couples (who are jointly assessed for tax) where one spouse works in the home caring for a dependent person. Click here for more information.
Tax Relief on Medical Expenses
If you pay medical expenses that are not covered by the State or by private health insurance, you may claim tax relief on some of those expenses. Click here for more information
Transport
Mobility Allowance
The Mobility Allowance is a means tested monthly payment payable by the Health Service Executive (HSE) in Ireland to people aged between 16 and 66 who have a disability and are unable to walk or use public transport and who would benefit from a change in surroundings; (for example, by financing the occasional taxi journey). If an allowance is awarded, it will be continued beyond the age of 66 but you may not apply for the allowance if you are aged 66 or over. Click here for more information
Disabled Person’s Parking Card
Disabled Person's Parking Cards (also known as European Parking Cards or Disabled Parking Badge) are available to people and parents of children living in Ireland with certain disabilities. The parking card is valid for 2 years from date of issue. Generally, the card is not issued to anyone under 5 years of age. Click here for more information.
Disabled Drivers and Disabled Passengers Scheme
The Disabled Drivers and Disabled Passengers Scheme provides a range of tax reliefs linked to the purchase and use of vehicles by disabled drivers and disabled passengers in Ireland.
Under the terms of the scheme, you can claim remission or repayment of vehicle registration tax (VRT), repayment of value-added tax (VAT) on the purchase of a vehicle and repayment of VAT on the cost of adapting a vehicle, up to a maximum of 9,525 euro for a disabled driver and 15,875 euro for a disabled passenger.
Relief is limited to a vehicle that has been specially constructed or adapted for use by a disabled person and that has an engine size of less than 2,000cc in the case of the driver and 4,000cc in the case of the passenger. Click here for more information.
Tax Relief for Vehicles
The Tax Relief for Vehicles Purchased for use by People with Disabilities Scheme provides for a range of tax reliefs in connection with the purchase and use of motor vehicles. Click here for more information.
Exception from Toll Charges
Vehicles adapted for disabled drivers or passengers are also entitled to exemption from toll fees. Toll road operators issue special passes which are recognised by all other toll road operators and which allow such vehicles pass through the tolls without paying. To obtain a special pass apply to your nearest toll road operator. Click here for more information.
Repayment of Excise Duty on Fuel
If you qualify for tax relief under the Vehicles Purchased for use by People with Disabilities Scheme, you can also claim repayment of excise duty on fuel used in your vehicle for the transport of a disabled person, up to a maximum of 600 gallons per year. In addition, if you qualify under the scheme, your vehicle may be exempt from the payment of annual road tax on application to a Motor Tax Office.
MEMBERS STORIES
Hard Work and Determination Pays Off
I recently completed a B.A. in Applied Social Studies (Social Care) in the Institute of Technology Blanchardstown (ITB). I thoroughly enjoyed this experience and would recommend the course and ITB to anyone thinking about going to college.
I sat my Leaving Certificate in June 2005. During this year I visited many colleges with my parents to see which ones would be both suitable and accessible for me. There were some PLC and Diploma courses on offer in the area of social care. I applied for these as I did not think I would get enough points in the Leaving Cert to get straight into the college course I wanted. I intended using these as stepping stones for the degree. I also investigated NUI Maynooth and ITB as these colleges were close to home and offering courses in Social Studies/Care. Social Studies in Maynooth was my first choice on my CAO and ITB was my second choice.
When I visited ITB and went around the campus I instantly had a feeling I would love it there. A really nice lady introduced herself to us. She was very encouraging. Later I found out she was head of the Department of Humanities. She talked me through the course and the workload involved. I also met with one of the lecturers and she explained about the various modules in the course and the assessment structure. I discussed my concerns with her around what would happen if I became sick during one of my years at ITB. She assured me that we would deal with this if the need arose. She said that I could takes the modules individually, if necessary, and take as many years to do the course as I needed. This put my mind at rest.
When I got the CAO offers I was delighted to have been offered a place in ITB. I was a bit disappointed at the time that I did not get my first choice in Maynooth, in retrospect ITB and the Social Care course was perfect for me as the campus is Blanchardstown was modern and accessible while Maynooth was a more sprawling campus which would have been very difficult for me to get around.
I was very nervous on my first day but very quickly settled into college life. I was approached straight away by the student services officer and she asked me what help I might need to make my time at ITB easier. As my parents were driving me to and from college every day we felt a practical help would be the provision of a taxi to and from college, even for one or two days a week. However, the student services officer managed to organise funding for every trip to and from college for the remainder of the four years of the course. This was a huge help to myself and my parents. I had the same taxi driver bring me to and from college every day and he was very reliable and obliging. The college was completely accessible to me and I was given a key which worked on all the lifts in every building of the campus. The staff and students were also very helpful to me if I needed anything; they were willing but not intrusive.
As part of the course I had to do two placements, one in 2nd year and one in 3rd, each for a duration of three months. These placements were usually organised for the students by our year tutor but I was allowed to find my own. This meant I was able to pick one that matched my ability accurately. I thoroughly enjoyed both of these placements and felt this experience boosted my confidence about my abilities to work in this field.
Each module was assessed in two ways, by exam and by continuous assessment which was usually in the form of an essay and tutorial contribution. I was always very nervous about doing the exams but the lectures were very good for having us well prepared for these. They provided revision weeks and extra individual help on problem areas as requested. The student services officer also offered me any support I felt I might need, including the use of a scribe, a tape-recorder etc. I did not actually avail of these aids but it was great to know they were available every year if necessary. If I needed to use the bathroom during the exam I would be allowed an extra fifteen minutes for every hour of the exam.
All in all my college experience has been one of the best experiences of my life and I thoroughly enjoyed my time in ITB. I could not say enough about how good everyone was to me. I would highly recommend anyone with a disability to give college a go. Before I started I never imagined that I would get through it so easily but with the appropriate supports in place it can most definitely be achieved. I am now looking forward to my future where I will hopefully work in the social care field.
Most third-level institutions have Disability Liaison Officers. The Disability Liaison Officer may provide a number of services including assistance with applying for a reserved place, finding suitable accommodation and arranging any special access requirements and provisions for sitting exams. Some institutions reserve a number of student accommodation places for students with disabilities.
Students with disabilities are eligible for third-level grants on the same basis as other students. There are some grants specifically for people with disabilities. A special fund to help third-level students is administered by the Department of Education and Science. You should apply directly to the third level institution at the beginning of the academic year. Kildare Member
The Path of Education
An interview with an 18 year old and living in Co. Wicklow
What was your first school?
I started in Montessori school in Marino in Bray. Marino in part of Enable Ireland.
How long did you stay in Marino?
I went from Montessori to primary there until I was eight years old.
How did the school facilitate you moving on?
The Marino school has a system where some students attend main stream school – this was called “The Bray School Project” which is the same idea as Educate Together. I attended one day a week.
What was your next step?
When I was about eight I started in the local boys school in Kilcool, St. Anthony’s. I started off by going two days a week and eventually left Marino altogether.
How did you feel making the break with Marino?
I was very sad leaving as I made lots of friends and knew the teachers and staff very well. I have always kept contact with the people I went to school with there.
What were the advantages to going to St. Anthony’s School?
It really helped towards my independence. For the first time ever I was able to go to school on my own. I got to meet people of my own age who lived locally. I felt more like a part of the community.
What about sports in school?
Being in a wheelchair is a great advantage when you are a goalie!!! The school always facilitated me as much as possible in any sport or outing taking place in the school.
How long did you stay in St. Anthony’s?
I went right up to 6th class.
Where to next?
I went on to East Glendalough secondary school.
What were the factors that made you decide on this particular school?
I actually found that there were a number of options open to me. East Glendalough was on top of the list mainly because it covered all criteria. It was accessible; it had a wide variety of subjects; the whole ethos of the school was that of integration and support, and most of all had small numbers of students per class.
Were there any drawbacks?
There was no transport so my mam had to drive me there and back five days a week for four years. In 3rd year I sat my inter Cert.
How did this go for you?
It was great. I did very well. I was allocated a scribe for all exams. I was very lucky that way.
Did you do transition year?
Yes. And as part of this I did work experience in my local Tesco Store.
How did this work for you?
I got great experience. Loved working with a great bunch of people and meeting the customers. One thing I found difficult was stacking shelves. There were some other small restrictions but all in all it was a positive experience
Did you go on to do your Leaving Cert?
Yes. In transition year I was made aware that East Glendalough did not do Leaving Cert Applied. This was because they did not have the numbers to facilitate doing it. So we had to look into transferring to another school.
Where to then?
I went to 5th year in St. Thomas’s in Bray. I worked hard and sat my leaving cert and graduated this year.
What stands out most in your time in St. Thomas’s?
I did some work placement during my first year there and ended up as a classroom assistant in Marino School.
The full circle! How did you feel about going back?
It was strange to be back in the school as an adult. I worked beside many of the teachers who has previously taught me. When I went back it was to the new school. It was much bigger and had great facilities. I enjoyed the experience immensely.
You are a great sportsman – when did you develop you interest in sport?
I started swimming when I first attended Marino and loved it. In 1st year I got interested in athletics and started to attend the sports events organised by the Irish Wheelchair Association.
What are your best sports?
Shot-putt and discus.
I know you have won many awards. Can you tell us the most important to you?
I suppose the most important to me was the Silver medal in the European Championships in 2003. I won this for the shot-putt. I got two Gold’s in Junior World Championships – one in shot-putt and one in discus. I also got a Gold in the All Ireland Schools Athletics.
Do you think you will continue with sports?
Yes I intend to. I find that it has helped me to grow in confidence and independence. I have been away and seen many different countries and have travelled to most parts of Ireland. It has been great for me. I am currently am member of the Paralympics team.
Where to next?
I am attending college, Bray institute for Further Education, and am studying Computer Portfolio. I am enjoying this I would hope to go on and become an engineer. I could do this through FAS and would love to get the opportunity to try.
Wicklow Member
The Machinery Yard
November 28th 1974 was a day we as a family will never forget and would be reminded of every year. Events leading up to the big day actually started around 10pm on November 26th with labour pains that have a habit of getting worse as the hours pass. 3am on the 27th with the case packed and petrol in the car, my husband Tom and I set out for Our Lady of Lourdes Hospital, Drogheda. We had left our 15 month old daughter with good friends for safe keeping. Having made this trip in this condition once before it was with some trepidation that I set out for the second time, especially as this time I was expecting twins. The journey had its fair share of potholes but I suppose in hindsight it at least had the benefit of progressing labour without medication. I always thought it was such a long journey, but when we got to “the machinery yard” in Drogheda I knew no matter what, we were near and would get there in time. This important landmark in our lives has since been replaced with new housing developments.
I spent the day in labour and at 8.30pm that evening visitors to the ward were sent home, my husband included. Not that he was complaining as it was not the done thing in those days for partners to be around during the delivery. At 9pm my obstetrician was concerned enough to decide I needed an emergency section and my husband was informed. So back he had to come, but as 1974 was also the year of the strike and we hadn’t factored in a return trip, he had planned to get petrol in the morning. But he needed it now! A call to the Gardai in Navan had some success as they drove him to Slane where a Louth Garda car escorted him to the hospital. Thank God I was unaware of all this or I would have killed him!
I was brought to theatre at 9.30pm bearing in mind that there was no lift and that patients had to be carried up and down the stairs by 2 porters! I was anesthetised but I remember two things, firstly I was so glad to get to sleep, and secondly there was a line of medical and nursing students lined up around the operating theatre. It would be nice for them to witness the delivery of twins by caesarean section. We would be entered into their little report books, and would become a case in question and statistics.
Next thing I remember on waking from a deep sleep to somebody saying “police escorted husband”, “does she know?” What exactly was I supposed to know?
Eventually at around 4am my husband told me that we had twin boys delivered at around 10pm the night before, but one of them, Kieran, had Spina Bifida. He had been baptised and luckily we had picked two boys names. I hate to think what they would have been called had it been 2 girls! His twin Brendan was fine even though he was the smaller of the two, and they were both in the special baby unit. Neither of us had any idea about Spina Bifida as things were not as advanced then as they are now. There were no scans, pre natal classes etc. I had to have an x-ray at 7 months to confirm I was having twins.
That morning (it was not the 29th) we both decided that whatever the problems were, he was our baby, and we would do all we could for him. We were not told much except that Kieran would have to go to Our Lady’s Hospital in Crumlin for surgery on his back early that morning. So at 8.30am he was brought in, in his incubator so I could have a look. He was a beautiful baby – pink and cute. So off he went to Dublin by ambulance for his operation. Nerve supply to his bladder and bowel were damaged but we would have to wait to see how things developed. Meantime back in the Lourdes Hospital Brendan and I progressed and we were allowed home. Kieran joined us four days later. In the meantime we had also picked up our daughter from our friends house. Lucky we had left her there or she could have been in police custody!!
Once home with 3 babies under 15 months it was all go. Weekly visits to Crumlin with Kieran, then every fortnight, monthly and as everything was going according to plan it stretched to yearly visits. As things go, the outlook was good. Kieran was ambulant but had some “hidden disabilities” that only we were aware of. He always wanted to be like the other children with Spina Bifida and really wanted a wheelchair. His wish was granted some years later for a short period when he had surgery to his Achilles tendons. He was at last like everybody else or so he thought!
School brought its own issues and problems. As teachers were told he had Spina Bifida there was the feeling that he should go to a special needs school. But we felt he was able for mainstream school. To get him into Primary School the Principal had to have a meeting with the board of Management, and all without anybody meeting the child in question! But in he got and continued in mainstream and took his Leaving Certificate in 1992.
Kieran needed appliances for his everyday needs and when I could no longer buy them in the shops due to his age I had to go to the Health Board. It felt they were paying for things personally, and it could even be classed as having to beg for the basics that he needed on a daily basis. I am glad I persisted though, as it may have helped others who were coming behind in the same position.
We were members (and still are) of the Louth/Meath branch of the Association and it was a great support for the families of the children concerned – a problem shared is a problem halved! There were great social outings and we all remember the great Christmas parties when all the brothers and sisters came along, and of course there was the chance of meeting Santy! There were also the holidays to Clogherhead which everybody looked forward to. Our Association is still strong and we still meet frequently. Now we have talks and seminars and they are a great help to raise awareness of Spina Bifida. Never again should anybody not know what Spina Bifida & Hydrocephalus is or have to beg for basic needs.
The Association has increased awareness, and changes in education have improved greatly over the 30 plus years that we have been members. Services, although too late for Kieran and others of his age group, are now available for others. We must applaud those who have brought both children’s and adults needs to the fore, and things to where they stand today. However I feel that there is still a need to further support and educate some of our adult members, who lost out during the early days of the Association.
As a family we all have our own memories, but SBHI and in particular our Louth/Meath Branch, has been a great resource and support to us and long may it continue.
Incidentally, my experiences in 1974 did not deter me from making another trip via “the machinery yard”, when our second daughter was born. Four little angels, all under three and a half years. It was only then we got sense!!
Mother from Meath
