"From a young age, I struggled with school ... " Lily and Mandy's story

Three years ago, our Chair, Anne Longfield, met Lily and her Mum Mandy. Lily has Special Educational Needs, and when Anne met her she was being home-schooled after a succession of mainstream schools had failed to meet her needs.  

A couple of weeks ago, we heard from Mandy, who told us that Lily had just received excellent GCSE results.

We asked them to tell us about their experiences of the education system, in their own words.


Lily's story

From a young age, I struggled with school significantly. I'd find a classroom environment too busy and loud and would often leave without permission which got me in trouble a lot.

I was often labelled difficult or misbehaved but little did they know I was an undiagnosed autistic in a school setting unable to support me.

It took 7 years for me to be formally diagnosed with autistic spectrum disorder and also reached the criteria for an EHCP which would enable me to get support in a school setting. I also have ADHD, sensory processing disorder and severe anxiety, which caused me to have significant trouble in school.

To date, I have been to 15 school settings which includes Pupil Referral Units and specialist schools. Now I am 16 and have just passed all my GCSEs in a school setting I've been at for 3 years, and I'll be returning too to do my A-levels.

This has been a long journey which I'll be sharing, hopefully to prevent any other struggles like mine, or to help people who are experiencing what I went through.

My mother always knew from a young age I was different from some of my siblings. She ended up doing some thorough research and concluded that I may have autism. After this, we went to doctors and she constantly told them about me possibly having autism, but she was heavily dismissed with lines like "girls can't have autism" and "she's just the difficult middle child".

My mother was determined to get me the right support as she knew I could succeed in education if given the right school and a chance. But as I got older the schools were less able to care for my complex needs and after being to many schools that did not work after one school locked me in a cupboard with no windows.

We moved house partly for better schools and because we needed a house somewhere else. My mum tried to get me into the local primary school near our new house, but it seemed like I had perceived a reputation and they lied and said they were full.

But a school a little smaller and down the road from the other school let us in. Sadly, that school lasted 9 days before asking my mum to never bring me back.

I'll state this now to clarify that I was never a bad kid. I just struggled then people painted a bad picture for me.

After this school, there weren't more in the area, so my mum went through the task of home-schooling me and my older sister. After a while, the previous school came back and said that they were able to take us in. It worked for a while there. I stayed there for quite some time, but the school clearly didn't want the best for me.

They stuck with one-to-one support and shoved me in the corner, hoping it would work. It never was a perfect fit after they ended up excluding me multiple times in a term mum decided it was time that we tried something else.

She contacted our local county council and asked for a specialist setting for me to complete my final year of primary school in. We then ended up waiting for a while. They put me in a PRU until they finally figured out a more permanent solution. It was a specialist primary school a 20-minute drive away, and I was provided with a taxi to get to and fro.

It worked for the rest of my last year but again not always the best, after they forced me to do a programme that I hated. If I resisted, they'd lock me in a "time-out" room until I would comply. The time out rooms were strange considering they were for primary school children. They were padded rooms which a child would go in to calm down, which doesn't sound bad as they had no locks on them. But instead of a lock, a member of staff would hold the door closed from outside until the child was deemed calm. They were not as great as it seemed.

I soldiered on for my last year and left with a specialist secondary school prepared for me in September. My mother searched for the right one but the one she liked was denied by the council. Little did anyone know secondary school was a whole different story.

The secondary school I was placed in was doomed to fail from the start. Even the teachers knew that, but the council didn't care and said "I needed to fail first'' before I got the right school. But after that failed attempt, I was sent to another school specifically for autistic young people. It seemed like the dream setting at first with its very flexible uniform, no homework scheme and very flexible nature.

It turned into the setting from hell.

It made me so stressed I ended up losing significant weight and became malnourished. After this my mum pulled me out as it became a state of emergency. My mother took matters into her own hands after this terrible failed setting, going to the county saying I was not returning to that school and that I will be home-schooled until I was in a better state.

This ended up taking quite a while, and after 8 months I decided it was time I returned to education after speaking to my mum. We spoke to the county and told them what we wanted to do. They recommended a school far away which we denied.

My older sister was successfully studying at the local mainstream school which had a strong special educational needs support department. My mum contacted the school, and a meeting was arranged. In the meeting, we talked about how we could make the schoolwork. The school was still hesitant but agreed to do a 6-week trial suggested by mum.

It took a bit of time, but I got settled into school in year 9, a week after everyone else went back. There were some hard days which were supported by both mum and the school. With the excellent support of everyone, I slowly became more confident and became less and less reluctant about exams.

Sadly, then the Covid pandemic struck, but I was determined to not let that stop me from this opportunity in front of me, so I carried on. Much like home-schooling but on the computer I worked every day to keep up with work and although in the pandemic I ended up dropping a subject when I went back I was able to carry on with my hard work.

In the summer holidays of 2021, I experienced a great amount of overwhelming stress which ended up causing me to attempt to suicide with medication to stop me from worrying. But that event only helped me to develop further as CAMHS got involved in giving me medication to help with my anxiety.

It allowed me to become even better and more positive, as a result of not having the anxiety constantly weighing on me. I returned to school with even more fight and determination. I worked hard throughout my time and each term showed improvement in results and myself. As the exams got nearer, I was worried, but I put my heart into them and tried my best for each one which was all I could do.

After the exams were done, I was happy and excited for the results to finally be given back. The long wait was hard but on 25th August, I received the results I'd been waiting for. I remember opening the envelope and feeling a rush of happiness as I saw the results that showed I passed all my subjects with 5s or more, which also allowed me to do the A-levels I wanted to do.

The long journey had come to a victorious end.

I owe it to my family, the amazing support at PRS school and my best friend who helped me during the exam period and who will be with me through sixth form, Jack. I couldn't have done it without these people's help.

I hope my story helps to empower and inspire others in the future.

Thank you for reading my story.


Mandy's story

Last Thursday was a big day in our house and the culmination of 12 years navigating the education system with our daughter, Lily. Like every parent we were anxious about our child's results, but we had the extra pressure of wondering if our gamble had paid off.

You see, Lily struggled with school. From the moment she entered pre-school, we knew things were going to be tricky. I must admit we were completely unprepared for what played out over the next nine years.

Lily was my 5th child and I had already spent several years at the school gates, I felt like an old hand and my expectations were based on my experiences with the older 4 children. I would do my part, do the reading, the homework, be there on time in the morning and end of day and turn up to the school fete.

This is the life of parents of neurotypical children. We were about to embark on the train marked SEND, and we had no idea where we would end up.

It started with difficulties at transition, drop off and collection. She cried when we dropped her off and cried when she was collected. As she got older, she became a runner, and would find small places to hide. She couldn't cope with the weather - too hot, too cold, too windy. Lily had a fight/flight response to environments she couldn't cope with. She would often be found hiding under desks or up high on window ledges, which obviously raised serious safeguarding concerns. Without a diagnosis the behaviours she displayed were put down to bad behaviour instead of reaction to environment, which in turn led to multiple exclusions.

We initially contacted the health visitor, who said she was reacting to the new baby and to keep going. When that didn't work and she started to get excluded, we went to the doctors and spent 6 years back and forward to paediatricians, in between multiple exclusions. It was the same thing every time - autistic traits but not enough for a diagnosis.

In the meantime, we took advice from everyone and tried everything, small village schools, larger better equipped schools, and still nothing changed. By chance, we stumbled across the amazing work Occupational Therapists can do and attended the Alert Programme, which really opened our eyes to the impact environment can have on children. It explained why she found home easier. As a mum of 6, I ran a tight ship and things were very ordered and calm, an environment that cannot be replicated in a class of 30 children.

Eventually we found ourselves in front of Nick at CAMHS who sat with Lily aged 10 and explained he thought she was autistic and, because we had all been through so much, he would put us forward for a diagnosis.

Four months later, after making friends with the booking lady, ringing constantly to see if there were any appointments, we got a late cancellation and a lovely doctor told us what we, by this point already knew - Lily was autistic.

Suddenly everything seemed to speed up - we met criteria for an EHCP after previously being refused and after seven schools and a split school term at the PRU, we felt we were getting somewhere.

We always knew Lily was a bright child, her vocabulary was broad, and she would notice things and talk about them passionately. She struggled with phonics but eventually she became a fluent reader and read well above her reading age and, despite regularly being excluded, was keeping up academically.

When we had to think about a setting going forward, we did lots of research and found several schools we thought would be good, but all were refused. We thought specialist would be the right choice because they would have a greater understanding.

My husband and I spent hours every night researching schools, researching autism, researching everything SEND. We even visited an open day, the day after my father-in-law died, in the hope it may be the right school. Lily had co-occurring conditions, she had sensory processing difficulties, anxiety, and ADHD.

Lily was eventually transferred to a specialist setting after a half term of home schooling and 3 weeks at another PRU. In turn, they recommended an all-girls school for Moderate Learning Difficulties, for her secondary placement. Despite us voicing concerns about whether it would suit her, we were told to keep quiet. The setting lasted seven weeks.

After another home school break, we were transferred to another specialist setting, and this time she was one of only two girls in a school full of boys. This setting ended abruptly when after 6 months of upset, she finally said she would rather be dead than go to school.

We were all exhausted and after a couple of months of home tuition provided by the local authority, we decided to go it alone. We recognised Lily was traumatised by everything that had happened, and she needed some positivity in her life.

I wanted her to rebuild her confidence from the bottom up and found inventive ways to teach positive life lessons. I taught her DIY skills, how to climb trees, I bought a flint camping lighter, the old fashion type and it took Lily 102 attempts to light the cotton wool, it also taught her sometimes things go wrong before they go right.

I taught her to meal plan and budget and to be able to buy ingredients at our local store. I got her a bank account so she could earn money for jobs. Our elderly neighbour could no longer walk his dog and she started to and slowly but surely, she gained more confidence.

We didn't have any idea how to home school, so we tried lots of things. Science experiments on the kitchen table, history programmes, bike riding, we read, wrote stories. After about 8 months Lily said she just wanted what everyone else had, a local school and some mates.

Our local authority had offered a school over an hour away, which we felt unsuitable, so we asked for an EP to assess her, and his findings backed up what we all felt: Lily was ready for school, she had gained her confidence back, but it had to be the right fit.

Our older daughter, Robyn, was successfully attending the local mainstream secondary. It had an additional resource provision attached that specialised in ASD, but it was oversubscribed. However, it showed the school had a good overall understanding of autism, so I rang them, and I made a suggestion. I gave over all the paperwork and the new EP report, and I asked if they would give her a 6-week trial. Apparently, that is unheard of, but to us it made sense. The school had recently appointed a new head who would have the final say. When he read what I sent over he said, "She wants to be here, that's half the battle, let's give it a go".

We planned. I would be at the end of the phone and could be at the school within 5 minutes, we decided on 8 GSCE subjects as she was going into year 9 and then spent 8 weeks covering the national curriculum for Maths and English so she wouldn't go in behind on her core subjects. She started the second week of September 2019.

I won't lie, there were tricky days. But I made it clear I would do whatever necessary to support the placement. After the 6 weeks trial was up, we were all settled, and the school were very happy to keep her on.

We worked hard to keep a positive home school relationship, the school have been so supportive and slowly Lily grew more confident in her subjects. Things were really starting to work well and then March 2020 came along and we are all in lockdown.

I really worried about how all the children would cope. By now the three youngest were all diagnosed autistic, so we decided to keep school hours. Lily would be at her laptop 8.45am every morning and she worked so hard. She had to drop dance as she couldn't do it on her own and struggled without the set perimeters, but every other lesson she was there.

When school reopened, she went back and wore a mask like everyone else and it helped her manage her anxiety. In class she would chew a hard sweet to help her concentrate, I even had it written into her EHCP. She had a ring she could twist on her finger but most importantly she had a place to go when things got too much and amazing staff who believed in her. As each report came in, her grades went up.

When she had a mental health issue in June 2021 CAMHS worked with her and tweaked her medication to enable her to feel less anxious and more focussed.

Lily had always dreamed of being a teacher, but previous schools had told her that wasn't possible. I decided to take her to view our local university on an open day so she could get an idea of what it's all about and she loved it. I found her telling the pro Dean about her journey in education and he told her he looked forward to seeing her in a couple of years.

She worked solidly over the next 6 months. She asked her teachers for past papers so she could practice timed assessments at home on the weekend. She threw herself into her studies and found ways to manage her anxiety. She had rituals that we supported, and she always knew I could be there in 5 minutes if things got too much, and I was always at the end of the phone If she needed a pep talk.

During the exams she was anxious, her stims increased dramatically but she wanted to carry on. I picked her up after each exam and gave her time in her room to decompress. Once the exams were over, I let her take all the time she needed to chill out and enjoy her summer.

On August 25th we drove to school together, I let her decide how she wanted to open the envelope. In the end it was her, the learning support team and me with her dad on WhatsApp video at work. The look of sheer delight on her face as she read, she had not only passed them all, 5s and above, she had earned her place in 6th form. That's a moment I will never forget.

As I reflect on this incredible journey we have been on, I realise we have been fortunate. We have made a way through, by adapting and recognising our daughters' strengths and supporting her with difficulties she faced. It's been a tough road, but I would do it all again.

It's been such a privilege to watch our girl achieve all we knew she could.

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