You will need pick your options for GCSE during year 9. There are no subjects that are out of bounds to people living with SMA including practical subjects such as technology, art and music. Your school is legally obliged to put support in place for you during your school years. So though you might find certain tasks a struggle – such as writing extended pieces in subjects like English and history, cutting up materials in art, some of the practical work in science – you are entitled to have an assistant help you with these things and more, so that you can focus on studying like everyone else. This is in addition to any help you may need from an assistant with things like using the toilet or carrying your school bag around.

If you don’t already have help in school and you think it would be useful, please speak to your SENCO (Special Educational Needs Co-ordinator) or someone you trust to get the process started. Having SMA doesn’t restrict you from choices.

Schools require students to take part in work experience at different times – some schools do this in year 10, others in year 12 – usually for 2 weeks. It’s helpful for getting a job, is always viewed favourably by employers and can also help you decide your future career.

Do you have a particular career or job in mind that you’re interested in doing when you leave school? If so, then think about trying to find work experience in that field. If you don’t know what you want to do when you leave school – try something to see whether it interests you or not. Do you have any friends or family members who work somewhere interesting? If you have absolutely no idea, then speak to a member of staff in your school who should be able to advise you further.

Usually you have to find your own work experience. Physical access will probably be very important for you. Realistically there’s no point doing your work experience in an office upstairs with no lift if you can’t manage stairs anymore… or working in a location without an accessible toilet if you would need one.

It might be very difficult to find somewhere that has everything, so sometimes you might want to be flexible or creative. Employers must make reasonable adjustments for their employees, so if there’s something you might need then just make sure you let them know. If you’ve found a suitable place for your work experience but, for example, there’s no suitable toilet, then is the venue local to your home? Building a more accessible toilet might not be a reasonable adjustment for a 2 week work placement, but enabling you to go home during your lunch break could be an option.

Will you need someone to go with you to work experience? If so, make sure you mention this too, so that the  employer is aware of this. Most employers, even for work experience, are understanding and want to give young people opportunities.

For more ideas: Whizz-Kidz offer a range of work placement and internships opportunities, and work skills days designed for young disabled people age 14-25 years old.

“I had a great week in the police control room where they take 999 and 101 calls as well as dispatching the police officers to deal with incidents. I was able to listen to some of the calls and to see how the police responded to them." Luke

Read about Luke’s experience >

This can be a good way to meet people and develop self confidence, learn and practise new skills, and at the same time give something back to society. It can also be a ‘stand out’ addition to your CV. There may be local volunteering opportunities, such as with a charity or youth club, or you may prefer something you can do online and based at home, for example connected with social media or website updating. There are rules and regulations to help keep volunteers safe – and as a volunteer, you shouldn’t end up spending money on your volunteering and you shouldn’t be used to do the job of someone who should be paid.

There are several organisations that can help you find a way to volunteer that suits you, but it’s worth being aware that many volunteering opportunities will need you to be a minimum age. To avoid any disappointment, do tell organisations your age and what you needs in terms of accessibility – things like no stairs / disabled toilet/ hands free phone / if you need your Personal Assistant (PA) with you. Your family and friends, form tutor, your SENCO (Special Educational Needs Co-ordinator) or your careers advisor, if you have one may have ideas.

NCVO – a searchable list of local volunteering centres.

Join in – for local sporting and community projects – a legacy of the London 2012 Olympic and Paralympic Games. Contact them to find out more.

National Citizen Service (NCS) – scheme for 15 to 17-year-olds.

Do-it.org – database of volunteering opportunities across the UK.

Many schools organise these. Some subjects, such as Geography, might require you to go on a field trip. You shouldn’t be excluded because you have SMA – reasonable adjustments have to be made, such as an accessible coach if needed. The school’s ‘usual’ field trip programme may include some places or activities that aren’t suitable for wheelchairs or people with walking difficulties, so school might need your help to find some alternatives which work for everyone. Planning well in advance is the key – talk to your subject teacher when you choose their subject and ask your parents, SENCO and TA(s) to discuss and plan an inclusive field trip.

Some schools offer this – for anyone aged 14 to 24. It offers a range of activities and challenges over 3 progressive award levels and can be good to have on your CV. See: Duke of Edinburgh and talk to your school if you’re interested.

Being open about your SMA when you’re going on work experience, volunteering or generally creating and taking opportunities to build up your CV is a personal decision. People often worry about discrimination, prejudice or lack of confidentiality. You will often have to give some information but it’s up to you how much. If you do decide to be open, most people will never have heard of SMA, so take your time to tell them what impact it has on you and what support you need to take part in what you’ve chosen to do .

Advantages of being open could include:

• Some places are keen to involve disabled people
• It could give you an opportunity to talk about yourself positively
• Adjustments can be put into place earlier
• You might build a better relationship and understanding with the people you’re going to be with

You’re the expert on your condition, what you can and can’t do with and without assistance, what you can do in a different way and what works best for you. Sharing this information can be helpful.

In the UK, the Equality Act 2010 states that all people, including disabled people should be treated equally and protected from discrimination in many situations, including education, employment, access to facilities, transport, goods and services. For more information:

• Disability Rights UK / Understanding the equality act: information for disabled students