Ruberta

My own experience

I was always academically capable but would tell teachers that I felt a few steps from being sucked under by a tidal wave. They thought I was talking about schoolwork when I was talking about life more generally. This was not seen as the cry for help that it was. I was, however, cut a lot of slack and given a lot of opportunities due to being capable, so things didn’t fall apart for me until later on.

I would be told by teachers that I needed to break free from my mother, be independent, go and live my own life, and break free from what was holding me back in my mind. The reason I was reluctant to do this was that she had needed my help for a long time when coping with my younger brother’s needs, but they didn’t get that at all. The needs only increased over time and I was forced to leave uni due to the pressure of it all (my grades never dropped but I was not taking care of myself enough to be away from home and I was worried about the situation with my brother).

Despite this, I saw school as a place to stay at to get my work done so I could do other things at home. I am glad that the teachers understood me being in their classrooms to do work, but I know that this would be stopped now.

My experience as a young adult and of when my brother was at school

I am now a young adult struggling with my mental health and continuing to care. We had to pull my brother out of school due to his needs not being met and now home educate. For many reasons I can’t work but I know the teachers I had would be disappointed if they knew. When I would attend school meetings with my mother when we tried to advocate for my brother, I would be told by the staff to stay out of it and that I was controlling and obstructive. They wrote this in a contribution to the picture of us being built up by social care. It took all my energy to turn around that view of me so that it would not cloud their judgement of our family. I was right in my feeling that my brother’s needs had not been fully understood, but it has been unnecessarily complicated. My own experience was mixed, but my experience of advocating for my brother was wholly negative.

Why ‘young carer’ and ‘young adult carer’ services were not right for me and why children’s disability social care lets carers down

Schools and other services often sign young carers up to young carer groups, thinking that this is enough. These groups on the whole seem to focus on putting more normality into the life of a young carer by giving them a space to have fun and, for teens, to talk about exams, school stress and sexual health. Young adult carer groups are very similar and focus on socialising and activities. For some, this may be exactly what they need. For me, despite the activities being fun, I felt like these services were at times ‘papering over the cracks’ and denying my reality. They reduce the time you have for homework and socialising and it may make kids feel ‘different’ if they go to a special group. While I can understand the temptation to refer someone to a relevant service and consider that ‘job done’, the young carer service can’t make everything better and there is more schools can do if aware of a carer, as I talk about in recommendations.

My Mum felt very judged for her parenting skills (and still does) and didn’t want to hold me back from going to uni, so she tried to appear like she was managing and wouldn’t be honest about my role to any professionals. I didn’t relate to any of the other young carers, who seemed to have no trouble with being away from home, perfectionism, stress or socialising. As I said, teachers at school only cut me slack because I was academically able, not because they knew about my carer role, which set a dangerous precedent. When Mum was admitted to hospital for about 2 or 3 weeks during my GCSEs, leaving me to move between homes and co-parent my brother at different stages with my Dad or Gran, neither of whom were of much support to me at all, the only support offered was ‘well you seem to be coping well’, ‘come play UNO with us’, ‘you can still come to the lunchtime club when you’re in’ and ‘would it help to be temporarily put in foster care?’.

I somehow fell off their radar when I moved schools for 6^th form and I feel maybe the process of managing university as a carer could have been navigated better if I was still supported. As I said above, the combined pressures of many family members with conditions (my Mum, Dad, Gran and brother all have physical health needs that I needed to be aware of) and my misguided attempt to be perfect academically meant I fell apart at uni.

When I came back from uni to find my brother’s mental health tanking faster than my own and Mum struggling to get support, I had to help turn all this around. As related above, this involved asking and demanding where Mum hadn’t felt able to before and ignoring a lot of judgement and accusations. Getting better support has taken 6 years so far and we are nowhere near benefitting from it yet. We have some diagnoses and may yet get more and it is all a constant fight.

One thing I also really want to get across is the fact that a child or adult can need more than one carer and the benefits and support systems aren’t designed for this. Furthermore, for adult carers of a child with disabilities, whether their parent or not, the fact that the child needs assessment from children’s disability social care is done holistically is not good enough. A separate parent carer or carer assessment should be offered whether the person cared for is a child or adult, but often it isn’t. They only give proper respite services to the families of the most complex children who are literally in crisis. I don’t begrudge that, except that they are supposed to also be offering help to prevent families from reaching a crisis point. They should offer more than just activities for the child or respite services whose rules are so restrictive that using them becomes a logistical and practical nightmare and the family doesn’t really get a break. They should provide a list of services they offer rather than asking you and then saying no. We transition soon so hopefully adult services will be better in this regard.

What I would recommend for carers at school and beyond

Charities and services that support young carers need to offer more than just fun and normality. For those that want it, they should be able to facilitate conversations where the honest reality of being a young carer or a carer (both the positive and negative aspects) is discussed and also offer longer-term mental health support. The opportunity to speak to decision-makers about their situation in order to make services better should also be offered. This is what I now have through Sibs and my political volunteering. Everyone’s story as an adult carer is unique, but many of us can relate to the day-to-day struggles and triumphs in our lives and those of the family members we support. The opportunity to process our experiences, discuss things and help others is invaluable and should be available to any carer or young carer who wants it. Activism is very important to me and I hope to continue it throughout my adult life, regardless of whether studying or working become possible for me in future or not. I needed acknowledgement of my role and what it meant and I am glad to have it now.

Schools and other services that become aware that a child (whether the sibling or the child with disabilities) is struggling or otherwise in need of support (whether that message comes from the child, a friend, a family member or a professional) should not just assume that other services are enough and that they can do nothing. They should offer relevant support, adjustments and assessments without so much of a struggle. For the young carer, this support can include a staff member to talk to, extending deadlines and whole school education along with external referrals. Blaming, ignoring or working against the family worsens the problem and damages the vital trust we all need to have in the services that support us.

This may be idealistic, but we need to move away from the goal of great grades and a job, car, family, and house as a measure of success and definitely away from judging people who live differently for whatever reason. While I accept that working should always pay better than benefits, the sanctions system and other rules, restrictions and assessments make things far harder than they need to be for groups that are already finding things tough.

Parents and family carers need to feel able to ask for support so it would be very helpful to them if options and examples of services that can be offered were easily obtainable online or by calling. This is to allow families to make informed decisions and not make requests that get refused. Parent carer and carer assessments should be offered as well as care needs assessments as an automatic entitlement and the key focus should be offering some way to give the carer(s) a proper break they can trust in, no matter the circumstances. Carers are now entitled to accommodations at work, but the same support and understanding are needed whether at school, studying or unable to work.

Finally, the availability of services to children and families needs to be increased, which requires funding and fair pay for the staff involved. If the focus is truly on early intervention and prevention, this needs to be reflected in the actions taken.

Alyx

What was your experience like at secondary school as a sibling?

When you’re a sibling of someone who presents in a way which is so different to how society teaches us we are supposed be, it can really affect you growing up. Going to school in the 90s and early 2000’s, disability wasn’t spoken about in the way which it is today. To me, my sister was normal. I was so confused when she wasn’t classed as “normal” to everyone else. Listening to the way other children spoke about disabilities in school and then going home to my sister was a horrendous experience which made me feel angry, confused and very upset. They had no idea how difficult things were and this type of behaviour only contributed to those difficulties. It took me to such a dark place for such a long time.

I always wanted to do my best in school and tried really hard but I just couldn’t understand subjects like maths or science. I remember starting school in the top maths class and quickly being moved to the bottom set. The other children found it hilarious that ‘the swat’ couldn’t achieve and that they were doing so much better than me. I felt that the teachers had more time and understanding for the bullies than for the quiet kids and I guess in the end I just stopped trying as much.

What helped?

To be completely honest, I’m not sure there was anything that helped at the time. Maybe having one or two friends to confide in but they didn’t understand at all. I spoke to a counsellor once who rang my mother and told her everything I had confided in him about so I never went back to him and that was the end of that. My coping mechanism at the time was staying at home and binge eating which caused me to become obese and of course, the other kids in school had a field day with that.

What didn’t?

Bullying was certainly a difficult aspect of being a sibling and then going home at the end of the school day to try and complete homework with my sister often crying and screaming in the background was ultimately impossible at times. The teachers would never understand this and my grades and confidence began to plummet but there was no support for kids like me at the time. Getting to the end of GCSE’s was a never-ending nightmare and I’m still not sure how I managed to scrape by with just enough to get into college. The counsellor in school wasn’t the best and I was unable to develop trust with any of the teachers or professionals in school. I felt invisible for the most part.

What would you want young siblings at secondary school to have now?

I strongly believe that all secondary school children should be educated on disabilities and the wide range of them. Not just ‘autism awareness’ or ‘adhd awareness’, it’s so important that children understand that there are many disabilities, some which are very complex, and that no one is immune to becoming disabled or becoming a sibling. It is likely that many of those children will go on to become parents of children with disabilities and it is vital that they are equipped with some knowledge and understanding of what that means for them, the child and their siblings.

Teachers and professionals in school should be trained annually around the experiences of siblings, and how this will affect their academic performance and mental health. There needs to be some special allowances for siblings who can’t get their homework in on time or who can’t commit to the same things which non-siblings or siblings of non-disabled people can. I feel that the most important area which secondary schools need to focus on is creating a safe support space for siblings where they can go for some time out away from the chaos. This space could be used for rest breaks or to facilitate sibling peer groups where children can meet others who experience a similar home life to them. A specialist counsellor or mental health professional should be easily accessible for siblings in all schools to ensure their wellbeing and safety. I also feel that it would be effective for siblings to have a key person who they can spend time with once a week. This time could be used to build a trusting relationship with a familiar adult who they could then share both the positives and negatives of being a sibling with. Taking regular time to listen to a sibling without any judgements would help so many children and young people who are struggling.

Maya

What was your experience like at Secondary School as a sibling?

My sister went to the same mainstream school as I did, but was meant to have a full Education, Health and Care Plan (EHCP). However, staffing issues, as well as a large number of students also needing support (but didn’t have an EHCP) meant that often she didn’t have teaching assistants in lessons, or taking her to and from lessons. It made her very anxious, meaning I often worried during my own lessons whether my sister was being supported. During my GCSE years, it became a lot harder. The support became even less, and I spent most break times (and sometimes between lessons too) with my sister. I would walk her to classes, sometimes help with personal care (i.e. going to the toilet or getting changed for PE), and make sure she’d had something to eat and drink. I remember one occasion, the lunchtime just before my French speaking exam, where she was particularly upset, and I had to console her, and try and get her to eat something. For her health conditions, it is very important that she stays hydrated, but she was so distraught on this particular day that it was hard to get her to listen. After walking her to her lesson, I remember running to the other side of school straight into my exam! It was very hard to concentrate, and in lessons I was often worrying about her.

What helped?

A local charity set up a young carers after school group, and arranged for fortnightly in school 1:1 appointments with a project worker. This was so helpful, and I was so lucky to have a group of people that just “understood” if it had been a particularly tricky day. When support (that she was entitled to, but there just weren’t the means to provide it) was in place, my sister was less anxious as her routine wasn’t disrupted, and I felt more focused on my exams. We also had a designated “young carers champion”, a teacher who we could go to with any problems, and who would email other teachers on our behalf if it had been a particularly tricky morning, or if we had not had time to do homework, so we didn’t have to explain the situation multiple times.

What didn’t?

I know the pressures facing Special Educational Needs (SEN) departments, especially in state schools, so I do not want to blame them, but missing most breaktimes and having to run across the school to meet my sister in time was sometimes quite stressful, particularly during exam season. I think they were sometimes unaware of how involved I had to be, but also in general I think school didn’t always make the connection between my sister’s disabilities and the secondary impact it might have on me. When my sister was in hospital, or even just had hospital appointments, the phone ban in school meant I often went hours without hearing any news, which was also quite stressful!

What would you want young siblings at secondary school to have now?

I think having a designated teacher or staff member that siblings can go to to offload, or raise any worries, is very helpful. Secondary school, particularly towards GCSE years, is when everyone first begins to think about their future and what they want to study, but for me and other siblings, we also had to consider whether our aspirations are compatible with caring for our siblings into adulthood. I had some amazing teachers, who listened to my worries about moving to university one day with no judgement and complete empathy, and I am very grateful for that. Having a designated quiet space at lunch or after school for siblings is also perhaps a good idea, as it can be hard to find that at home. Whether it is just to unwind, or to focus on homework, having undisturbed peace can sometimes be hard to find!

Names have been changed

Fiona

What was your experience like at Secondary school as a sibling?

Pretty up and down, I wonder how much of this is influenced by the decade (90s) and if things have changed. Very much head down get on with the work, don’t cause any trouble. Lots of ignorance and misunderstanding re: disability and comments (not nice ones) related to my brother and his disabilities.

What helped?

If teachers took time out to ask how I was, if they acknowledged (even in a really small way) that perhaps my home life was different to some of my peers. This wasn’t common but really made a difference when it happened – being “seen” in a supportive way, rather than because you and your family are different.

What didn’t?

When there was no acknowledgement of any differences. When teachers / school didn’t actively make an effort to raise awareness about disability and didn’t challenge awful words that were thrown around like they had no meaning all of the time by other students.

What would you want young siblings at secondary school to have now?

To know that they are unique and important. To have space to meet other siblings and/or to talk to staff who are aware of sibling situations and what might support.

Names have been changed

Abby

What was your experience like at Secondary school as a sibling?

Very difficult

What helped?

Nothing!

What didn’t?

We had just moved into the area when I went to secondary school, so I didn’t know anyone. I was convinced that no-one should know about my brother and spent a lot of time worrying, and avoiding the truth, to try and present myself and my family as “normal”.

What would you want young siblings at secondary school to have now?

A local support group for young siblings, from primary age, run by professionals and siblings, with lots of information and support presented in an easy-to-understand way, with fun/social activities as well.

Names have been changed.

Farah

What was your experience like at Secondary school as a sibling?

Throughout secondary school as a sibling I did struggle. There were teachers who were aware of my situation, for example, I did my GCSE health and social care coursework all about my sister as we had to write about someone with a health issue. Therefore, there were teachers who were aware of my sister’s disability but just didn’t provide any support or recognise me as a young carer. Also, my school never actually mentioned anything or spoke about young carers so although I was a young carer I wasn’t actually aware. I went to my school’s sixth form and as I was struggling to meet my A-Level coursework deadlines, a supportive teacher asked me more questions. I said I don’t have time, and he asked me what I did when I went home. I told him my sister is disabled and has cerebral palsy and he immediately recognised that I was a young carer and got me an extension on my deadline. He was really understanding and I wish more teachers were like this. He would also regularly ask me if I was okay and I knew he was understanding about the situation.

What helped?

The teacher in sixth form recognising me as a young carer and getting me that extension as without that extension I may have really struggled to pass the coursework element of that A-Level. Also, knowing there was a teacher who actually understood.

What didn’t?

No awareness of young carers or the struggle of young siblings as I wish I had support before I was in sixth form. Teachers not actually realising the impact that being a young sibling can have on an individual’s school experience.

What would you want young siblings at secondary school to have now?

Awareness on young carers and being a young sibling as some children may not realise that they are a young carer. I think support groups could be good to meet other siblings. Teachers just being generally understanding and aware of the needs of siblings. Understanding that they may need extra time to complete work/homework due their situation.

Names have been changed

Sammie

What was your experience like at Secondary school as a sibling?

It was difficult. It was stressful. It was necessary.

I was often thought of as being an outcast or as being particularly introvert. Neither of which were true. I was just too busy at home to go playing out with friends, go to every after school club etc. That’s not to say that I couldn’t if I didn’t want to, I absolutely could. I was never forced into a caring role, I supported by brother (and my Mum) because I wanted to. However, the wider picture was not always considered.

After school was often a rush of completing homework, helping support my brother in the home, supporting with meal times and personal care, before my support then allowed my Mum to go and complete tasks such as the weekly shop etc.

Similarly, my evenings also consisted of providing ongoing emotional support to my Mum with events that may have occurred during the day, preparing for upcoming meetings at my brothers school etc. This type of support intensified and became more frequent as I progressed through high school and I become more confident, competent and knowledgeable in this area.

My school work or grades never suffered, my evenings and weekends just looked different to other people’s and that was fine. No concern was ever raised, nor was it required to be. However, I do worry that if I was in school now that services may be referred to without my consent in order to ‘support’ me where it wasn’t needed which would only have intensified the stress and pressure already on my Mum.

What helped?

Teachers having an understanding of my family life, my caring role and my wanting to support my brother as opposed to having it forced upon me. Speaking to friends who understood my situation or just were generally understanding was also helpful.

What didn’t?

Derogatory comments being made by other pupils and staff alike about things such as me not playing out with my friends, going to as many sleepovers as other people etc. Being referred to as an outsider when in actuality, the only thing that made me this, was those comments.

What would you want young siblings at secondary school to have now?

Access to support if they require/wish for it. A safe place to vent when needed and just be a ‘normal’ young person. Encouragement to take time for themselves but in a way that allowed them to still support their loved ones as they wish to. As I said, my concern now is that referrals may be made to children’s services, social workers, early help, young carers etc for individuals when this might not be needed. It is not always ‘concerning’ for a young person to provide support in the home to a loved one. It is not always too much pressure or a ‘red flag’. Sometimes that’s just life, and that can often be forgotten when professionals get lost in a world where referrals are necessary. Speak to the sibling and see if they feel they need support. If they don’t, then no referrals are permitted. Ensure they know how to access support should they require it and try to be a little more understanding to their situation.

Building in some time to speak to pastoral support may also be helpful and allow staff to understand what normal looks like for them.

Lily

***TRIGGER WARNING*** The article below contains references to physical violence, verbal abuse and thoughts of suicide.

What was your experience like at Secondary school as a sibling?

As a sibling of a brother, two years younger than me, with Asperger’s Syndrome, my experience of secondary school was both a blessing and a challenge. School acted as a respite for me in some ways. Due to the chaos at home; the constant hypervigilance and walking on eggshells, the violent outbursts and verbal threats directed at myself and my parents from my brother and the ‘sweeping under the carpet’ of anything that had happened by parents, just to prevent things from erupting again. Rather than addressing what was going on at home, I lived in the background trying to ignore it and burying my experiences so deep that they could never have an impact on me, or so I thought.

I threw myself into my school work and got constant praise as a ‘model student’ and being a ‘pleasure to teach’. I could see how difficult things were for my parents and I thought that by doing this it would make things much easier for them, however, this was at detriment to myself. As I always got excellent grades and reports, my parents never had to worry about me, they never had to pay me as much attention because why should they? My grades and teachers said I was doing well – but really, inside my mind, I was numb. I was scared. I was helpless. I was a young girl who lived in fear every day of what was going to happen. What mood would he wake up in? Would his socks and uniform feel right today? What kind of day had he had at school? I was constantly living on the edge of my seat, ready to jump and hide and shut myself away if things kicked off. If he was in a bad mood, what was he going to do today? Threaten to kill my mum? Spit in my face? Trash my bedroom? Chase me with a kitchen knife? Would my dad need to restrain him to protect us? Would I need to lock myself in the bathroom to protect myself?

I would frequently leave the house before school in tears, petrified of witnessing my brother physically assaulting my mum or threatening her. This happened often, on a weekly basis, almost as soon as my dad left for work. I would run around to my neighbour’s house where my best friend lived and sit in her room, curled up, relaying the tales of what had happened that morning while she was still getting ready for school. Then I still somehow managed to put on a brave face, put on that all too familiar mask, to go to school and focus the whole day and be present, dealing with ‘normal’ teenage problems such as too much homework and friendship issues. When my brother joined the same school as me, the fear followed me to school as well. Would I see him? Would he cause trouble? Would I have to admit that this person was my brother? If I’m honest, I hated him. I despised him. I was scared of him and I was ashamed of him. I had so little understanding of his condition that I didn’t know any better.

My teachers and pastoral team had no idea what was going on for me. I was so good at school, I got good grades, so clearly, I was fine, I did not need any support. I did not feel brave enough to share my reality with adults who I barely knew and did not have a close relationship with. I couldn’t even share how I truly felt with my parents, because I did not want to burden them even more. I was one of those kids who slipped through the net because I suffered in silence and did not shout about what was happening to me. Some of my friends knew what was happening but they never truly understood until they witnessed and experienced the meltdowns and the outbursts themselves. I felt very alone. I felt like I was out of control and the only thing I could control was my effort at school, to work hard and try to succeed and get away from this house and my brother. I felt numb. I seriously contemplated ending my life. These are not things that a teenager should have to go through, especially not alone.

The problem is, I never saw these things as traumatic experiences. This was normal life for me. It is only looking back as an adult and having had therapy that I have realised what a massive impact my experiences during childhood and adolescence had on me and how they are still with me now, even though I have worked through a lot of it. My parents tried their best but they had minimal support (although much more than I had) from the neurodevelopmental team and a lack understanding of his condition, just as I did. The reason I am writing and sharing this is to release these emotions that are still stuck inside me but more importantly, to help young people who may be experiencing similar things to me. I want to be able to use my negative experiences to give others better ones.

What helped?

I appreciate that not all siblings of those with autism spectrum condition or lifelong disabilities were as bad as mine and I am pleased that this is the case. In my situation and in my opinion the things that helped me the most were my friends – I could not have asked for better, more supportive friends, my parents – even though they did some things that did not serve me, they did support me to do things I enjoyed and enabled this as they knew it would give me some respite. My nan was also a big help, she just got me. She would listen to me, she would sit with me and just be there when I went round and could not speak because I was crying. If I am honest, I cannot say that there was anything at school in place that helped me. I recognise that things have come a long way since I finished secondary school in 2007, however in my job role, I hear all too often that schools are not doing enough to help individuals with additional needs, let alone their siblings.

What didn’t?

I can say with certainty that nothing at school helped me. This is, therefore, what didn’t help me. The school had absolutely no idea that I was struggling with my mental health because of my situation at home. Yes, I know I could have spoken up and sought help, but I was not brave enough to do that and I was ashamed. I thought that somehow it was my fault and that I was not strong enough to cope with the hand that had been dealt. It also did not help on a family scale that the school, despite numerous exclusions and meltdowns, and believe it or not, an actual diagnosis, did not believe that my brother had underlying needs and blamed my parents. This was incredibly frustrating and it was not until a senior member of staff realised I was his sister, that they began to take things seriously. It should have never have got to that point and in fact, when they did realise, I was never approached by any staff member to see how I was doing.

What would you want young siblings at secondary school to have now?

I would like to see young siblings at secondary school to have access to support. Whether it is formal support through external services or whether it is a trusted member of staff to check in with them on their mental wellbeing or just be there to listen. I had no support apart from a couple of sessions with my brother’s key worker from the neurodevelopmental team when I was around 16. A little too late if you ask me, the damage was already done.

I also think siblings should be given access to education about their siblings’ conditions to help them understand it. I believe this would have made a massive difference to me and really change the way I viewed my brother. I would have maybe been more sympathetic rather than seeing him as evil.

I think siblings should also have access to Sibs and their support systems and even social groups with other siblings in school or the local community because these people know! They truly understand because they are experiencing similar things. It makes an immeasurable difference to connect with people in the same boat as us, something I did not get to realise until I was in my mid-twenties and discovered Sibs. I will always be grateful for finding them and wholly support and appreciate the work they do.

Names have been changed