Case Study: Gillian, Parent

I could see that Amy was having difficulties even when she was at nursery. Prior to nursery/school she was always joyful, active and exuberant but on starting nursery, she would often become dysregulated before and after school, pushing me around and lashing out and throwing things This continued and worsened as she got older. Things have only improved slightly as a result of our learning how to de-escalate and support her with her emotional regulation.  

At primary school, the Reception teacher told me that she recognised the signs that Amy was very anxious. She was constantly biting her nails and always on the move. We managed the first few years and the school did what they could but, once she entered year 3, all the extra teaching assistant support was removed and things got really difficult. Amy would hide under the table with her hands over her ears or run around the classroom kicking the walls. 

I pushed for an education psychology assessment and a statement of special educational needs, although the ALNCO (Additional Learning Needs Co-ordinator) said there wasn’t enough evidence. The process dragged on for 18 months. In the end, I went to mediation and gave evidence myself and Amy was awarded a statement with 21 hours of 1-1 support increasing to full time support on transition to high school. She now has diagnoses of ADHD, ASD and FASD (fetal alcohol spectrum disorder) as well as attachment difficulties. 

I do feel as though the school did what they could, but there is only so much they can do and only so many resources. 

After the Covid-19 pandemic, it became harder and harder to get Amy into school. She would run away if we walked to school. If I drove her in the car, she would hide on the floor and refuse to get out. Sometimes the headteacher would come out to the car to persuade her into school. Her final year at primary school was particularly difficult. Sometimes she would hold on to the school gates or curl up into a ball on the ground to avoid going in. I do feel as though the school did what they could, but there is only so much they can do and only so many resources. 

The transition to secondary school was a worrying time for us all, but the school went over and above to help Amy. They tried to get to know her and her needs and involved her in devising regulating activities that fitted with her own interests. They even created a sensory room to use if she became dysregulated.  

The first half term went quite well and we felt more optimistic, but things started to go downhill after the half term holidays. Amy became friends with other children who are often dysregulated. This group became the ‘bad kids’ of the school and more and more it seemed as though the school thought Amy was choosing bad behaviour despite knowing her challenges and diagnoses. When Amy asked to leave the class to regulate herself, she was told it could be for five minutes only. They were seeing her need to regulate as a work-avoidance strategy rather than a sensory break. If she became disruptive, she was asked to join another class, which was very shaming and made her more heightened and anxious. 

Then there were budget cuts at the school which meant that much of the teaching assistants team disappeared overnight with no warning. Trusted key workers that Amy had got to know well were suddenly gone, damaging Amy’s already low level of trust in adults. 

Shockingly, Amy began self-harming and expressing thoughts of suicide. The school seemed to think this was quite common and a phase that Amy would grow out of as she was being influenced by others. Thankfully these behaviours have passed and school were supportive but, as a parent, it was an awful time. 

Throughout all of these challenges, Amy has rarely had a day off school, even though it would be the easiest option to let her take time off. Every day she misses the bus. She gets fixated over aspects of her morning routine and can’t move on. She struggles to wear the uniform because of sensory difficulties. Most days I have to drive her to school and we are late. Sometimes I’m worried that I’m pushing her too hard to attend school, but then I worry that if she takes time off, she’ll never want to go back, so we continue this battle every day. 

I have decided to stop trying to fight every battle and focus on happiness and health.

For the first time in my life, I have experienced my own mental health difficulties. I have managed to cope by taking a job with much less responsibility and more flexibility but this has also impacted upon us hugely from a financial perspective. I have also decided to stop trying to fight every battle and focus on happiness and health. We don’t do Amy’s homework at home, and rarely talk about school.  

There is a digital behaviour app which also updates with homework and timetable so it is not really optional. Failure to follow instructions, being off task and not completing work on time are logged negatively and although there is some leeway for these issues with some teachers due to Amy’s disabilities, there will always be those teachers who do not understand Amy’s difficulties and therefore these are logged as negative behaviour points and lead to detentions. There is no space at home for supporting Amy’s actual learning, or helping her to make better progress as we have to focus on keeping her regulated after school, helping her to develop the resilience she needs to be able to function and fit into a learning environment that doesn’t really cater to her needs  

I have worried about whether she will be able to get any qualifications or manage to hold down a job. As a family we absolutely see the value in education, but right now we have to focus on our and Amy’s mental health and just surviving one day at a time and trying to make the most of her childhood and our family time. We see our role as compensating for the negative impact of school and we help her to build on her actual strengths and encourage outside activities that contribute to her wellbeing and interests.