Lily’s experience: from primary to secondary school

Mum Amanda talks about her daughter’s experience of transitioning from Year 6 to Year 7 and shares her tips and how she got support.

When my daughter Lily was four years old she had a stroke and was in hospital for a week. She’s now 11, and started secondary school in September, and now I can look back and see what we’ve learnt in terms of getting support for your child from the school.

Support in primary school

In primary school I didn’t kick up enough; I just thought it was the physical side of having a stroke that affected Lily. But it was more than that. As Lily moved through primary school I had concerns about her learning.
Lily last day at primary school
Lily's last day at primary school
‘Lily’s okay’, was the response I got, ‘she’s not the worst in the class’. There was little understanding of the effects of stroke; it was so rare. Working at the school Lily went to made it really tricky to push as hard as I wanted to. I asked for a healthcare plan; I never got one. School agreed Lily needed one, but it was never awarded. Nor an Education, Health and Care plan (EHCP). My advice as a parent is to keep asking and state that you need one given the situation. Eventually as Lily got to Year 6, high school looming, I decided now I need to push, I need to make sure she is okay in high school. Finally, after an assessment at a Rehab clinic, Lily had a diagnosis of a language disorder linked to her stroke amongst other things. This one assessment gave me, and the school, everything we needed to apply for her EHCP plan. You get to a point where you think ‘Am I asking too much?’, but usually things aren’t going to be done unless you speak out. As soon as we had Lily assessed for an EHCP we got it a couple of months later. Lily struggled with anxiety at school for a long time, but neither I (nor the school staff) really understood how to help her. Now she is a confident, adventure seeker and literally skips to school.

Preparing for secondary school

Lily moved on to a local secondary school and had a great transition. I didn’t feel that she got all the correct support needed in primary school due to the late assessment from the Rehab clinic. I have shouted extra hard at high school and it’s worked! Before the transition we talked about high school all the time – probably from the start of Year 5. It is never too early to talk about high school. We’d go and drive past the high school so Lily saw it face to face rather than just hearing about it. I was well-prepared and in the summer term of Year 6 at the secondary school Open Day I found the SENCO and asked to make an appointment for before Lily started. I used the Stroke Association toolkit for schools to help the transition. And the primary school needed to work well with the secondary school, which it did.
Lily first day at high school
Lily's first day at secondary school

Practical tips for school

Once Lily started secondary school she had a timetable was that was colour-coded and the days and lessons were clear. We came across little things that made a big difference and really helped. For example, I’d bought Lily a school bag but once she came to using it she said it was too big with too many pockets. She just needed something simpler. Lily has her timetable laminated on a lanyard. A friend travels to and from school with Lily and that’s massive, having someone to go in with every day.

The difference with secondary school

Going to a high school, with different teachers, meant that we did have to make adjustments. I was so worried about Lily having anxiety and fatigue; I was terrified we’d go back to where we’d been in primary. But Lily coped. She’s awesome. I needn’t have worried! One thing we did was give the teachers a list of things to do for Lily. This included Lily needing to sit at the front; it didn’t always happen but if I needed to point this out the school had my list of things to refer back to. Lily has her thumbs up card and cue cards, but in reality she’s never had to use them! I asked the school to try and make Lily use her left arm. And basically I had face-to-face contact with as many people at school as possible. We use humour a lot too. Lily’s finished her first term at secondary school and started the year excited about the return to school and seeing her friends. It’s awesome! Amanda received support from The Cambridge Centre for Paediatric Neuropsychological Rehabilitation (CCPNR) and The Stroke Association including its toolkit for teachers. The Children’s Trust produces a booklet Acquired brain injury in children: a guide for teachers and school staff (P&P costs only).
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