Going back to school

You have the right to be included in all activities at school, college or further education. Learn about your rights, what support is out there for you, understanding your emotions, thinking about sex and relationships and hear from other young people with a spinal cord injury about how they’ve returned to education.

Young people’s experiences

What is it like to go back to school after a spinal cord injury?

You might be feeling worried about what it will be like to go back to school or education. A great way to learn is to hear from other young people who have done the same thing. That’s why young people have shared their experiences and advice to help make what might seem quite scary, a little less daunting.

We have lots of real life stories, and will cover issues like returning to school, what support is out there for you, understanding your emotions, thinking about sex and relationships, and what your rights are.

Back Up has worked with many children and young people with spinal cord injuries who have returned to schools.  They told us about their experiences – how it felt, what worked well and what could have gone better.

Ben’s story

I first got my spinal cord injury in 2007 I was struck down with a virus in the spine which they diagnosed as Transverse Myelitis. After two years of retraining myself how to walk again, it came back in 2009 and worsened my physical state as it took away the use of my arms and legs.

When it first happened I was 12, and when it came back I was 14, just in the middle of my GCSE’s. It wasn’t really a great time to be honest.

When I first had it I was pretty okay, I was determined to beat it, but when it came back in 2009 I coped with it quite badly. I had spent two years retraining myself to walk again, I was almost there, I was on crutches, and then it just felt like those two years were for nothing, it just wiped them from me. So I did get depression. I did hide away from people; I kept myself in my room for 3 months solid and felt anxious and depressed during that time.

The first time I got the virus the school wasn’t really accessible as it was an old building, but they were building a new one so I didn’t go back to school until that was finished.

“When I went back I was nervous because I didn’t know how people would react to me being in a wheelchair.”

When the virus came back in 2009 going back to my school then was twice as bad because of the anxiety, and the depression I got. It was just so bad, I found it really hard even getting in the car let alone going into the school itself. But the school was really supportive. They never forced me to do anything; they let me take it at my own pace. Instead of chucking me straight into lessons surrounded by people, they let me stay in a room where I felt comfortable with students coming in and out, until I was used to being around people again before I went back into my lessons. The teachers asked me what I wanted. Every week they would ask me how I was doing, is there anything else they could do for me, were the times okay for me to come into lessons, and told me to let them know when I wanted to start increasing the times I was in school. The decisions were in my hands and that helped a lot. I controlled the process. There was a level of trust there. If the school had no idea what I was going through and they weren’t supporting me in the right way I would definitely have wanted meetings with everyone to tell them ‘this is what’s needed’ or ‘this is what you can’t do’ . But because I trusted them I didn’t need to do this.

My advice to young people

My friends and family were shocked when they found out about my spinal cord injury. Looking back it was probably just as hard on them as it was on me. But not once did they give up on me. My family and friends were my rock, if it wasn’t for them I wouldn’t be here now. They kept me going, they would never let me slip behind, and they would always check how I was. As time went on they got used to it and they got used to my different types of needs.

It’s easy for me to say, looking back on it, that you shouldn’t push out your family and friends, as much as you want to, as much as it’s hard to let them in. Obviously when you’re in a dark and depressive place you can’t see any other way out but pushing your friends and family away is a big mistake because you need them there. You need someone to talk to, and you need your rocks to see you through.

Mia’s story

What would have helped you more?

Definitely confidence. When I first started school again I started at a different school, and so I had to make new friends all over again. However, I’d never really been a confident person even before my accident and so being in a wheelchair at a new school was really hard for me at first. I never started conversation first in case I seemed awkward or in case other people were awkward. Other people saw that I was quiet and shy and so they felt awkward coming up to me and initiating a conversation, and so it was a vicious circle. Looking back now, I can see that if I had been more myself and more open and confident, I definitely would have attracted more people and made friendships sooner. I guess there was also a huge sense of mystery around me because no one really knew why I was in a wheelchair at school. Most people assumed I’d been born with a deformity or disease of some sort and I heard a lot of rumours. A lot of people also thought that I’d be horrendously offended if they asked about my disability. I’ve never seen other people’s curiosity about the chair offensive at all but I guess they didn’t know that. It took me quite a while to make friends properly because I didn’t put myself out there at all. I spent break and lunch time by myself, convinced others only hung out with me because they felt sorry for me. I also never went to form in the mornings and afternoons, meaning I was missing out on all key social times. It took me a while before I made proper friends, but finally I started talking more in classes with the people next to me and coming outside for lunch. By the end of the school year, I’d started going outside everyday at lunch and break time, and instead of leaving lessons early to avoid the rush, I left late with my friends. We got to hang out in the empty classrooms between classes and this was were I met most people. By the following year (the beginning of year 10) I’d started going to form in the afternoons, going to the crowded canteen at break and lunch, wandering around the corridors with my friends (sometimes during lesson time) and even staying extra late after school to spend more time with classmates and sit outside in the afternoon sunshine. I was accepted a lot more by everyone and everyone in my classes spoke to me and treated me like everyone else. I made really close friends and even had relationships (however brief) which really helped boost my self esteem and confidence further.

What advice would you give to another young person?

I would say that its completely normal to feel nervous. Starting any new school is nerve-racking, and the concept of starting somewhere new and really standing out can be horrible. I sort of learnt to just be myself and not care what other people think. I know, it way easier said than done – we all value other peoples opinions of ourselves whether we care to admit It or not. However, over time I began to realise that we’re all just kids. Why should I let a bunch of teenagers make me feel uncomfortable and constantly on edge, when I could instead ignore it and focus on my work? Once I cared less about what everyone was seeing and thinking I felt so much better. Instead of feeling self conscious of the way I sat, I began making  sure I was comfortable and in a good position for my spine instead of wandering what looked best from someone else’s point of view. I feel like once you’ve  made friends and are more widely accepted by your classmates this will be easier, but your classmates will actually find it a lot easier to approach you once they sense that confidence from the beginning. Try not to care what everyone else is thinking and focus on yourself. At the end of the day, we go to school for one reason, and one reason alone. To learn – so you might as well get some actual learning done rather than spending your day worrying about what everyone else is doing.

Kevin’s story

Back Up helped me with most of my issues and concerns of having an SCI. My first involvement was with the youth advisory group (YAG). This was my first time ever meeting someone else with a spinal cord injury, I got to know so many people and I learned a few tips and tricks for going through day to day life. While on the course we spoke about mentoring and I had never heard of it at this time and when I had done the course I phoned Back Up and had a mentor. This was important to me as I was just starting secondary school and wanted to know a few things about what it was going to be like. My mentor was very supportive and that made me confident to go to school.

I got into contact with my mentor a second time but this time it was for a completely different reason and this was because I had to start catheterising. This was a worry as I had never had it done so again the magical Back Up mentoring team made me confident to do so.

The only thing that I didn’t have support with was with wheelchair skills and that was only because I had self-taught before I got in touch with Back Up.

Why did you want Back Up to visit your school?

I wanted Back Up to visit my school because I was worried about how my exam time table was going to be affected as a result on having to catheterise, I wanted to have enough time to complete the exam with time to spare but that would not happen if I went to the toilet.

What happened?

I phoned the office about my concerns and so we arranged a meeting with my exam prep teacher and the closest representative of Back Up along with myself and my mum. We discussed about how we could solve the issue surrounding that problem and we concluded that I needed to have supervised rest breaks, which are where during the exam someone stops the clock and they escort me to wherever I need to be and let me do what I need to do. This put my mind to rest and I had no more worries. While there was someone at my school I gave an assembly with the Back Up representative and explained what Back Up does, how they have helped me and how the school can help me such as independence to remind the pupils that I don’t need them to always hold the door for me etc.

“Since the assembly I have noticed that school life has been much more enjoyable, and I have been treated a lot more normally. I still have the occasional person hold doors for me but now I have them doing it for others other than just me.”

Kevin and Julie explaining to pupils what it means to have a spinal cord injury.

How did you find the visit?

I found the visit to be super helpful and the assembly has made the other pupils more aware of SCI and life with one.

“I found it was super helpful that I could put my mind to rest as I had been worrying about how my exams would go as I had started catheterising. The assembly helped by making people treat me a lot more normally rather than thinking, “he is in a wheelchair, so he needs me to push him and hold the door for him all the time”.”

Talk to another young person

If you’d like to talk to another young person who also has a spinal cord injury about what their experiences have been like, then we can arrange this. We have young people who can chat to you on the phone, over Skype or messenger to offer their advice and answer any questions you may have about things such as:

  • what going back to school may be like
  • moving onto college
  • planning for University
  • gaining work experience

If you’d like to speak to another young person, then you can email Ella or call her on 020 8875 1805.

Returning to school

You might feel nervous going back to school after your spinal cord injury but hopefully you are also looking forward to seeing all your friends and teachers again.

In this section there are some stories from other young people and their advice to help you when you go back to school.

Before you go back

“Being in hospital and not being able to see your friends does take its effect on you.”

Dean, 15

If you are still in hospital maybe you could suggest that your friends come to visit you or keep in touch with them through social media or the phone. Ask them to keep you up to date with things that are happening at school. It can also be helpful to organise some visits before you return full time.

“Obviously you are going to be nervous to start with, it’s a completely natural feeling. I was in hospital for five months and I hadn’t seen my friends once. It was emotionally scarring and did hurt me quite a lot. But it’s an amazing feeling going back and seeing all your friends again, so look forward to it.”

Dean, 15

Talk to your school

“I would suggest before a newly injured person even considers going back to college that they should contact the school, talk to the staff and make arrangements for every different scenario that might happen and every single part of their individual needs. Make sure everything’s in place before they return, and make sure the school fully understands about having a student there with a spinal cord injury.”

Ben, 17

Having a teaching assistant (TA) – advice from a young person

What is most helpful about having a TA?

  • Helped me get to each class safely by leaving the previous class a few minutes before the bell went.
  • They took notes in lesson if i was ill
  • They enabled me to go back to mainstream schooling

Challenges/difficulties

  • They tended to do everything for me even when I was capable of carrying out activities independently
  • If something wasn’t in place which should have been they would make a fuss even though I could manage without the extra aids. I found this embarrassing.

How I deal with the challenges

I didn’t speak up as I didn’t want to seem rude. She had my best interests at heart but didn’t listen to me or my mum why I wanted more independence.

Advice for future TAs

  • Listen to the pupil and family to see how you can best support them
  • Keep in touch at all times – we were able to contact my TA whenever necessary e.g to let her know first thing in the morning if i was off ill, and she could let my mum know later in the day of any incidents or queries at the end of the day.

Mia’s story

What kind of things helped you when you went back to school?

I had a lot of support from my family, as well as nurses from my hospital, at home tutors and friends I had from other schools. I also had really good transport to school (an on call black taxi service with really good access) meaning I didn’t have to waste time worrying about getting to school on time. I always got dropped off really early which I loved because it gave me a full hour to prepare for the day. I could read, listen to music, or do extra revision. By year 10, that hour before school was filled with chats and adventures with my friends, who also started coming to school extra early to see me beforehand. I used to leave school early too, way before afternoon form finished. However, by year 10 I was asking to be picked up at 4 instead of 3:30 in order to have fun after school with my friends and form group. When I first started school I was also allowed to bring out people early from lessons to go to the next lesson with me. Teachers thought this was necessary in case something happened to me in the corridors which I thought was highly unlikely (still nothing has ever happened) but it meant that I could leave lessons early with a friend. This was really good because funnily enough, that’s where I became really close with people. The funniest things would happen in those 6 minutes between classes in the empty corridors. I’d get to next lesson with the giggles and my face hurting from smiling so much.

“The use of a safe space for me also helped when starting school again.”

I had a reduced timetable because I’d missed so much being in hospital, and so when my classmates were in French and PE, I’d have a free period. This basically meant that I could sit in an empty classroom, or outside at the benches, and do my own extra work. Well, I was meant to do extra work but sometimes I ended up just reading a book or listening to music. This really helped because sometimes the amount of people around me 24/7 overwhelmed me. Having an hour to just sit out and be by myself and sit out was really useful for me to just relax before being with everyone again for the next lesson.

Laura’s story

What would have helped you more?

Confidence. That’s a huge thing. No one comes out of hospital feeling 100% confident, so maybe having more assistance in bringing out my confidence, and helping me realise that I wasn’t a freak, that I wasn’t a crazy alien in a wheelchair. If you’re growing up in a wheelchair you think you’re abnormal because no one is going through the same things you are. It would have helped to have more reassurance from more people that’s it’s okay to be a bit different.

When I went to high school I was wrapped up in cotton wool, not by my parents but by the teachers, by the school in general and the system. The attitude was that I was in a wheelchair and that I couldn’t do anything and that I’d need loads of help. I wanted to be just like everyone else and that prevented it. I had a teaching assistant come around with me, the first year everyone made friends and I found it really hard to make friends because I had someone with me all the time and they saw it as a barrier. They couldn’t talk to me about anything because there was a teacher there. So I think more openness and understanding between teachers and pupils would help.

“At first it was apparently necessary to have the teaching assistant with me, but by year 9 when I had grown more confident it wasn’t. I then said that it wasn’t necessary to have that support anymore. The school listened to me which was good.”

There were lots of rules and regulations that I was made to follow that I don’t think were needed. There was a rule that I wasn’t allowed to go in the lift on my own which was really annoying. At first I wasn’t allowed to go in the lift with just my friends so I didn’t have any because all the constraints of having a teacher with me all the time. Then I could go in the lift but only with friends. When you’re at school your friends sometimes want to go and do something else. So there were occasions when I would get stranded because I couldn’t go on my own in the lift. In year 11 I deliberately broke the rules, put my foot down and said I don’t need someone with me all the time, I don’t need all this protection. Then the situation got sorted out and I loved the last few years of school.

What advice would you give a young person?

Even if your confidence is totally blown don’t be afraid to say what you want. Schools and colleges really do want to help and for you to have the best time, but you can sometimes feel afraid of offending people and want to be polite but it gets to the point when, because you’re not allowed to do certain things and all the constraints put on you, you don’t realise what you’re missing out on. And I missed out on a lot of freedom and a lot of fun and friendship because I was too afraid to speak out. So I would say to someone who’s just starting out at schools after an injury, don’t be afraid to say what you want. If you don’t like something say it, it you want something changed say it, because it’s only you who can make that difference. I did eventually, I do now at college and it helps everyone around me.

Since leaving my school there have been two other wheelchair users, and the school has lifts, doors, and ramps that are really good for wheelchairs. The school have asked me what’s good, what needs changing? They want to improve the experience for the person in a wheelchair.

What kind of things helped you when you went back to school?

Deciding to start drama outside of school helped because it gave me more confidence to make friends. Playing the guitar as well that was a big help for me, it helped me look forward to things at school.

Resources

Check out the Spinal Injuries Association’s guide for teenagers: Wha’ever Guide for teenagers with a spinal cord injury

Your rights – what they are and who can help

Education must develop every child’s personality, talents and abilities to the full.

You have a right to be included in everything during your education. You have a right to have your voice heard and your thoughts and feelings taken into consideration when figuring out how best to support your needs. You have a right to access mainstream education.

It can be a scary time settling into nursery, school or college life after your spinal cord injury, but we are here to support you.

What are your rights?

The United Nation’s Convention on the Rights of the Child (UNCRC) applies to all children and young people aged 17 and under.

These rights include:

  1. Your right to life without harm from other people
  2. Your right to have your views respected, and to have your best interests considered at all times
  3.  Your right to freedom of expression, and access to information that is about you
  4. Your right to health care
  5. Your right to education and leisure activities

These rights apply to all children and young people, with no exceptions.

What is advocacy?

Advocacy is making sure people have the information they need to make the right choices for them, supporting people to say what they want, to secure their rights, take a full part in their communities and get the services and support they need.

You can be a self-advocate and speak up for yourself. Or if you need a little help to make yourself heard that’s okay too.

Who can help?

At Back Up, we have a team of trained Education Advocates who can support you to be included and heard. Education Advocates all have a spinal cord injury themselves, so they understand and can share their first-hand experiences about it. They can visit you in your education setting to:

  • deliver workshops or assemblies about spinal cord injury to raise awareness and understanding with students and teachers
  • support at meetings such as an annual review
  • make sure your voice and experience are heard

If you want to find out more about how an Education Advocate can support you, email Jo or call her on 020 8875 1805.

You can also talk to a trained advocate through National Youth Advocacy Service (NYAS) on their helpline: 0300 330 3131. You can check out their website too where you can get advice online as well.

Rights resources

Here are links to other organisations and more detailed information about your rights:

Read more about your rights here

Lawstuff is a website aimed at young people that talks through all your rights:

Some information about the Equality Act 2010

Advocacy Resources

You can talk to a trained advocate through National Youth Advocacy Service (NYAS) on their helpline: 0300 330 3131. Check out their website here where you can also get advice online

The Children’s Society’s advocacy services are based all over the UK, you can find their contact details here

Finding and using support networks

There are many organisations that help children and young people with disabilities. You can also use your friends, family and your school for support.

After a spinal cord injury, you may be feeling a whole range of emotions and this can be difficult to deal with. We talk more about emotions and how to deal with them in the next section 4 d) ‘Understanding and dealing with emotions, relationships and sex’.

Who is there to help?

Back Up is great place to start and we are always happy to talk with you and give advice.

We can support you to be fully included at nursery, school or college and with your friends. We can speak to or arrange a visit to your school to help your teachers to prepare for your return after your injury, and help make sure that you are included in everything at school.

We also have a free Education Inclusion Toolkit about education life and spinal cord injury that you can read through and share with your parents and teachers.

Email Jo to find out more or call her on 020 8875 1805.

Talk to someone

If you want to talk to someone who understands what it’s like to have a spinal cord injury, we can find the right person for you. We can put you in contact with another young person to ask questions about life with spinal cord injury or to get emotional and practical support from someone who understand. You can talk to someone either on the phone, over Skype, messenger or via an email, whatever way feels most comfortable for you.

You might want to talk to another young person about things like:

  • School/college/university
  • Work (jobs and careers)
  • Driving
  • Friends, relationships
  • Leisure interests – travel, sport, music etc
  • Aspirations

“Talking to another young person helped me realise that life doesn’t stop, that it keeps going and that I shouldn’t stop myself doing anything, as I can do anything I want to do, just adapted in different ways.” Danielle, 17

If you’d like to speak to another young person about life with spinal cord injury, please email Ella or call 020 8875 1805.

Online forum

Our online Facebook forum is another place that young people with spinal cord injury can connect with others. It is a space to ask questions, share experiences, support others and share things you think would be interesting to the group. If you’d like to join, please add Ella as a friend on Facebook and Ella can bring you into the forum.

Attend a course

Each summer we run two courses for children and young people. Our courses are an opportunity for children to try new activities such as canoeing, abseiling and horse riding, as well as the chance to meet other children affected by spinal cord injury, learn wheelchair skills and have some fun!

Talk to Ella to find out more about how Back Up can help, by calling 020 8875 1805 or email her.

Laura’s story

Is there any information or support network that helped you?

Back Up helped me immensely. Going on a course boosted my confidence. I was with people my own age and I could talk to them about different aspects of being in a wheelchair, and I didn’t feel lonely anymore. That whole week was quite a big moment in my life when I realised that I could be like any other teenager. The mentoring that I had through Back Up was also really crucial. I did a presentation in front of my class at school when I was in year eight. I explained about spinal cord injury, a little bit about Back Up. From then people were more willing to understand it made a difference, as people thought oh she’s just like us but sat down. It gave me the inclination to be open about things and break down barriers that disability sometimes causes.

Was there any support you wanted but couldn’t find?

One of the huge things that I couldn’t find for a long time was someone to talk to who was in a similar situation. When you don’t know anyone who’s in a wheelchair that is a really horrible situation to be in, and I didn’t find anyone to help me with that for the first two years after my injury.  Facebook is a great network of support, I’ve been added by loads of people, and talk to people who are newly injured. 

Whizz Kidz

Whizz Kidz is a charity that helps disabled children throughout the UK. They can:

  • Help get you a new wheelchair
  • Train you in wheelchair skills
  • Offer work placements and life skills
  • Offer you advice

Check out their website here

Support around bullying

To find out information about bullying and how to get support, please see section 3.8.

Help at nursery, school, college or University

You can get help from different people, which can include:

  • Your teacher (s)
  • Teaching assistant (s)
  • Support worker (s)
  • Special Needs Co-ordinator (SENCO)
  • Connexions Personal Advisers
  • Your friends
  • Your parent or carer (s)

If you want to talk to someone about accessing help, please email Ella or call her on 020 8875 1805.

Resources

Understanding and dealing with emotions, relationships and sex

This section talks about emotions, how to deal with them and what help is out there. It also covers sex and relationships.

Emotions

Just as people’s bodies can become unwell, people’s minds can become unwell too. Mental health problems are more common than you might think – three children in every classroom has a mental health problem.

After having a spinal cord injury you might be feeling all different kinds of emotions from one day to the next or even from one minute to the next! This is totally normal and everyone who experiences a spinal cord injury goes through a period when they are trying to understand what has happened to them, and what this means for their future.

“My advice to young people going back to school after an injury is not to worry about it, because the longer you are there the easier it gets. It does take a while to adjust. It takes time. But you will find different ways of doing things in the school and outside the school. Take your time to settle in and give it chance and don’t give up.”

Danielle, 16

This section has some advice from other young people who have had a spinal cord injury. It will hopefully show that you are not alone, and maybe give you some ideas of how you can positively deal with your own feelings.

Ben’s story

My friends and family were shocked when they found out about my spinal cord injury. Looking back it was probably just as hard on them as it was on me. But not once did they give up on me. My family and friends were my rock, if it wasn’t for them I wouldn’t be here now. They kept me going, they would never let me slip behind, and they would always check how I was. As time went on they got used to it and they got used to my different types of needs.

It’s easy for me to say, looking back on it, that you shouldn’t push out your family and friends, as much as you want to, as much as it’s hard to let them in. Obviously when you’re in a dark and depressive place you can’t see any other way out but pushing your friends and family away is a big mistake because you need them there.

“You need someone to talk to, and you need your rocks to see you through.”

Ben, 17

Laura’s story

How did you deal with your emotions?

Early on during hospital I listened to music a lot. I listened to the band Green Day for a whole year. If the album American Idiot didn’t exist, neither would I. You kind of find things to latch on to, to occupy your head. I got into different kinds of music. When I was in hospital I was lying in bed in Southport this guy encouraged me to learn the guitar. Now I’m grade 5 guitar. Music for most teenagers is a big thing that helps you through life, and for someone who’s been injured it’s even more important.

I started going to drama lessons which boosted my confidence enormously.

“In hospital you find it easy to talk to people because they all understand. They understand about catheters, and day to day stuff like how difficult it is to get dressed. Then you leave hospital and you’re thrown into this world of ‘normality’ and no one knows anything.”

When you’re a teenager or a kid it’s really difficult to want to open up and talk about the ins and outs of your injury. I was really uncomfortable talking about catheters, when you go to the toilet and take a bit longer than everyone else; people ask you why you’re taking so long. I would just go bright red. You don’t explain and you feel isolated from everyone because you can’t say anything to people.

For a long time I didn’t have anyone to talk to, apart from my mum. My mum and dad would get it, but I was quite lonely.

After my course with Back Up, I got in touch with them and arranged some mentoring. I had a mentor who was injured at a similar age to me. That was really good because I got to speak to someone who knew what I was on about, and knew the ins and outs of a spinal cord injury. I spoke to her on the phone after school for so many weeks. It was really good to talk to someone who understood what I was going through, it was reassuring.

After the mentoring I realised that I could open up to my friends. And now I can talk to my mates. It’s about having that confidence to talk to people about things so that they understand you more.

If you want to find out more about Back Up’s mentoring services call us 020 8875 1805 or email Charlie.

Talking about how you feel

Emotions and feelings are an everyday part of life. How we feel can influence many parts of our life. Sometimes your feelings may seem really strong, controlling and that they are taking over what you do.

Whether at school or at home, if you are struggling to deal with your feelings then there are people you can talk to. It may be that you just want to talk to someone about the situation you are in or tell them the things that you are finding difficult to cope with.

As discussed above, at Back Up we have a mentoring service where we can team you up with someone who is a similar age or has a similar level injury. You can talk to them and they can offer advice based on their own experiences of spinal cord injury.

If you don’t feel ready to talk to someone on a regular basis, then you can just call into our office and have a chat with someone on the team to find out more about the support we offer and ask any questions you may have. You can call our office on 020 8875 1805.

ChildLine is the UK’s free helpline for children and young people. They are a confidential service, which means that they won’t tell anyone else what you talk about unless they feel you or someone else is in immediate danger. They are at the end of the phone 24/7 to offer comfort and support – so if you feel like you need to talk to someone in the middle of the night, they will be at the end of the phone. You can call them on 0800 11 11. If you don’t feel like speaking on the phone, they also have a one-to-one online chat service that you can find on their website.

You can also find free, confidential help from The Mix. They can offer emotional support and talk everything through with you to find out the best way that they can support you.

Coping with your emotions

Talking to someone else about how you feel is not always easy. There are different ways of managing and coping with your feelings, such as listening to music which Laura talks about above. Other coping techniques may include:

  • exercise
  • writing your feelings in a journal
  • taking deep breaths
  • engaging in an activity you enjoy
  • social support from family and friends

After your injury you may be feeling a whole range of emotions such as frustration or anger about what has happened. Feelings like anger are your body’s way of dealing with something happening to it and so feeling angry about your injury sometimes is understandable. Dealing with and managing anger is important and there is a lot of support out there to help you with this. You can find out more on ways to cope with your emotions by visiting here.

Self harm

Self harming is when a young person inflicts pain on themselves on purpose in some way, such as cutting, scratching, burning. Young people can use self harm as a way of coping with their emotions. Feeling angry, anxious or stressed can build up to a point where self harm is used to deal with this intensity of emotion.

If you are self harming, it may be that you are using this as a way of coping with your emotions or to feel some control in a situation where you may have none.

Although self harm is more common than a lot of people think, it is important to remember that it is really dangerous. By self harming you are putting yourself at risk of being seriously hurt, possibly killing yourself.

There is help out there. Asking for help can be scary and is a hard thing to do, but it is a positive step forward to changing things for the better. To find out about organisations that can help, visit here. You can also watch videos of people talking about their experiences of self harm, common questions surrounding it and what to do next by visiting here.

If you want to find out more about what self harm is, ask questions, read about other young people’s experience of self harm and find out how to get help, visit selfharmUK

Family and friends

When you are feeling low or finding it difficult to cope with your emotions, you may feel like other people won’t understand. They may not have been through the same experiences as you, but they may have felt similar emotions at some point in their lives.

Family and friends care about you and can be a good place to get support from when you are finding it difficult to cope. They can offer emotional support, such as talking things through with you or visiting your GP with you. They can also offer practical support, such as talking about the ways they cope with emotion or coming along with you to a social event. To find out more about how family and friends can provide support, visit here.

If you don’t think you have any family or friends that you want to talk to, this doesn’t mean that you are alone. There are organisations that you can call with people who will be at the other end of the phone and are there to listen and try to support you in the best way for you. ChildLine or Samaritans are places you can contact if you want to talk to someone immediately.

At Back Up we have also recently created our Under 18’s forum for young people affected by spinal cord injury. Here you can communicate with other young people who have a spinal cord injury and may be experiencing similar things to you. To join this group, add Ella Back Up as a friend on Facebook.

Remember, if you are struggling, don’t be afraid to ask for help. Most people at some point in their lives will feel overwhelmed by something or find it difficult to cope. You may have a friend or family member who you feel comfortable talking to or maybe you’d prefer to talk to someone who doesn’t know you and can provide support. There are lots of people and organisations who can help you to cope with your feelings and offer support.

More information and advice about emotional well-being:

  • Young Minds is a charity that offers information to young people and children about mental health and emotional well-being.
  • Mind gives information about where children and young people can get support with a mental health problem.
  • ChildLine can help and advice about a wide range of issues, you can talk to a counsellor online, send ChildLine an email or post on the message boards.
  • CAMHS offer child and adolescent mental health services. You can find information for children and young people and how to arrange an appointment with your local CAMHS.
  • The Mix is the UK’s free, confidential helpline service for young people under 25 who need help, but don’t know where to turn. They also have a free app that you can download.
  • Papyrus speak for free to young people under 35 that are feeling suicidal.
  • Samaritans are there for you to talk to anytime you like, in your own way and off the record.
  • selfharmUK is a project dedicated to supporting young people impacted by self-harm, providing a safe space to talk, ask any questions and be honest about what’s going on in your life.
  • Youth Access is a national membership organisation for youth information, advice and counselling agencies. Provides information on youth agencies to children aged 11-25 but does not provide direct advice.
  • Kooth offer Free, safe and anonymous online support for young people.

Relationships, sex and sexuality

“Many teenagers are terrified about what lies ahead for them in relationships and with sex… But the relationships and sexuality issues for teenagers are very much the same for everyone else.”

Michelle Donald, Psychosexual Therapist

Sex and relationships might be something that worries you after your injury. Sex might not be exactly the same as it would have been without your injury, but the good news is that many people with a spinal cord injury go on to have good long term relationships, get married and have children.

“Some young people have said they don’t feel like sex and relationships are possible in their lives anymore or that they can’t believe anyone will ever fancy them. They need to hear the message that they are capable of being attractive and part of happy, healthy, loving relationships just like everyone else is.”

Zoe Chevalier, Clinical Psychologist

More information about sex and relationships:

Life after school

You may not have given much thought about what you want to do after you finish school or you may have been planning it for a long time! It can be an exciting, anxious and uncertain time while you figure out what’s next and begin to take your first steps into it.

In this section we look at what choices are available to you after finishing school and where to find out more information about them.

Finishing school

The end of your school time may be feel like an exciting point in your life when you consider what you may do next and what options are available to you. It can also be a daunting time and many people feel unsure or nervous about what they want to do next. You may be thinking about starting a job, going to university, spending time traveling or something completely different. There are many options open to you and it is important that you find one that suits you.

When can you leave school?

You used to be able to leave school at the age of 16, but now you are required to stay in some kind of education or training until you are 18. These changes don’t mean that you need to stay in school. There are lots of things that you may want to do. Your options include:

  • Staying in education. If you decide that you want to stay in education, you can go to a school or college. You can choose from A levels, BTECs or a range of other courses. To find out about courses that are available in your area, visit here.
  • Starting an apprenticeship. Apprenticeships are a way of learning and earning money at the same time. You would be in a proper working job for most of your time and then also spend some time in training. To find out more about apprenticeships, visit here.
  • Work. You may want to start a part time or full time job, volunteer or start your own business. To find out more about starting work, visit here. We will also talk more about the work place later in this section.

Work experience

Work experience can give you the opportunity to get hands-on experience of what it is like in a working environment. This may be something you consider doing while at school, college or University to gain practical experience and skills for the work place. By developing your skills and confidence in a working environment, you are able to show potential employers what you can offer.

At Back Up we have had several young people come into the office to gain work experience. There may be a particular area of work you are interested in, such as fundraising or finance and we can offer an insight into what this work involves. Even if you don’t have a specific interest, just by being in an office you can gain valuable and transferable skills such as working with programs like Excel. Read about Kevin’s and Harkaran’s work experience in the Back Up office. To find out more about setting up work experience with Back Up, email Ella or call 020 8875 1805.

Whizz-Kidz offer a range of work placement and internships opportunities, and work skills days aimed for young people with disabilities aged between 1425 years old.Find out more about work experience with Whizz-Kidz.

If you are thinking about moving away from home, living independently or heading to University, and want to develop your life skills, our Moving Forwards course at Back Up may be for you. The course is aimed at young people aged 18-25 years old. Covering tasks such as transfers, getting dressed independently, accessing public transport, making a meal, the course will help you to build in confidence and achieve your goals. Find out more about our Moving Forwards course.

“My work experience was was so valuable to me, because it let me prove that the chair doesn’t get in the way of being able to work and have an income for yourself, that you can be 100% independent in the work environment and it gave me a taster into what employers expect, so I’m prepared for work life. It really opened my eyes to how different the education system is compared to working in an office, but I enjoyed every minute and would do it over again if I could.”

Ashleigh, 17, work experience at Back Up

Getting a job

As discussed above, one of your options when leaving school is to find a job.

If you are over 18, a Disability Employment Adviser at your local Jobcentre can help you find a job and discuss other support available to you.

It may be that you need adjustments made to a work place to enable you to work. The Equality Act 2010 means that employers have to remove barriers in the workplace for disabled people and financial support is available to help them do this.

The Access to Work scheme can provide money towards these adjustments to help you find a job and stay in work. Find out more about the Access to Work scheme.

If you are thinking of getting a job, you may be interested in our Back Up to Work course. The course is about equipping you with the knowledge and confidence you need to work towards your employment goals. Find out more about Back Up to Work.

Going to University

If you’ve finished school or college and are looking at going to University, there are a few things you may want to consider.

Funding is available for students with disabilities for things like specialist equipment or note-takers. You may be entitled to Disabled Students Allowances (DSAs) for physical or mental impairments, long-term or mental health conditions, or specific learning difficulties such as dyslexia. Find out more about how to apply for DSAs.

It is also important that you talk to your course providers about what support you need.

It can be a good idea to visit the University too so that you can have a look around at the facilities such as the lecture halls, libraries and living accommodation. Arranging to meet with staff there to talk about your needs, any concerns you have and to explain what is important to you can be reassuring and allows them to understand what you need.

Visiting a University is also a useful opportunity to look around the area. You may want to investigate what local access to shops and venues is like.

“When I looked at the University halls where I’d be living, I wanted to make sure I wasn’t in a room away from other first years just because I needed accessability. I talked to the staff and explained that it was important to me that I was included with everyone else. This made sure they were considering this when making arrangements and reassured me that they understood my needs.”

Ella, Under 18’s Services manager

If you have a personal assistant to help you with your care needs, then you may be unsure how this will work at University. If you go to a university, even if it is outside your Local Authority (LA) area, you can take your care package with you.

Moving away to University can be daunting. You may be moving into University living accommodation, are starting a new course and making friends. There is lots to think about and having to consider your disability on top of all that can feel overwhelming. It is understandable if you are feeling anxious or stressed.

We have a section of our toolkit that talks about what support is available for dealing with your emotions.

The mental health charity Mind have also recently set up a free app for the ups and downs of university life, called Emoodji. By choosing emotion icons to match your mood, the app will then show you how your mood has fluctuated. It’s also packed with tips on how to deal with different aspects of uni life. Find out more about Emoodji.

Find out more information about applying to University.

Our team of school advocates, who all have a spinal cord injury themselves, can visit your University with you to help support you asking questions and finding out relevant information. If you would like to arrange this, email Jo or call 020 8875 1805.

Studying abroad

Some Universities offer students the chance to spend a year abroad as part of their degree. This can be the ideal opportunity to combine travel with study, learn a new language or just experience what it is like to live in a different country.

If you are thinking of studying abroad, you may want to consider:

  • starting your research early
  • finding out about support available
  • speak to your University’s International office

Studying abroad with a disability may feel like a big challenge, but there are many students who do it. Find out more about studying abroad with a disability.

If you are looking to study in Europe, the Erasmus Programme is an European Union exchange student programme offering opportunities to do so. Students with disabilities may be entitled to extra funding to cover associated costs on your Erasmus placement. Find out more about funding for an Erasmus placement.

“Don’t be put off by the challenge of studying abroad with a disability as some university staff may see it as too difficult and might try to dissuade you. It’s an amazing experience to find out what you’re capable of and studying abroad also makes you super employable – even more so if you do it with a disability.”

Merryn, year abroad in Florence, Italy

Travel

The world is a big place with lots of countries to see and explore. You may not feel ready right now to be going to University or finding a job and instead thinking about going traveling.

You may want to go on an organised gap year on an internship or to volunteer, travel with a group through a company or plan your trip by yourself.

When you have a spinal cord injury, there are certain things you have to consider and plan around when traveling such as medical supplies and accessibility. You may need to think about things such as pressure relief when on long journeys and what support you may need while away.

Although it may feel a bit overwhelming, it is also exciting thinking about what new places you can visit and how you will make it work with your needs.

Your choices

Do remember that whatever you decide to do, nothing has to be forever. Whether you decide to get a job, go to University, travel or do something completely different, you are the one living it and you know what that feels like. Let people know how to best support you and if something isn’t working then talk to someone about alternative options.

You can also call our office on 020 8875 1805 if you want to ask us any questions about post school life with a spinal cord injury.

Resources

  • National Careers Service offers careers advice with a specific section for young people aged 13-17.
  • Start is a free, online careers platform, designed to connect 11-18 year olds with their future career potential.
  • icould video library is a collection of films featuring young people sharing their career stories.
  • Student Minds run student support groups so that students experiencing mental health difficulties have access to a supportive environment in which they can talk openly about life, university and mental health.
  • Disability Rights UK have a helpline for students with disabilities that you can call if you have any specific questions on 0800 328 5050.
  • The Student Room has an online forum where you can post questions and seek peer support.
  • Independent Gap Year Advice provide relevant information and good advice to anyone, whether disabled or not, wishing to take a gap break. You will find case studies written by young people with disabilities who have undertaken challenging gap year projects overseas or in the UK.
  • EmployAbility is an organisation dedicated to assisting students and graduates with all disabilities, including dyslexia or long term health conditions, into employment.
  • BASE is the national trade association for the supported employment sector, providing support for people with disabilities who want to work.
  • Movement to Work is a collaboration of leading UK employers helping thousands of unemployed young people, giving them the skills and confidence to find a job.
  • ExchangeAbility is a long−term project of Erasmus Student Network and it was developed to increase the participation of students with disabilities in mobility, and make Erasmus Student Network an accessible organization