5 learnings and tips on childhood stroke

Our take-aways from The Stroke Association Parent Support day in London 2019.

Stroke Association birds eye
Twice a year The Stroke Association hold parents and carer parents and carer events in different areas of England so parents and professionals can meet and learn about childhood stroke and useful tips. Here are some key learnings and tips from this month’s event:

1. Young Stroke Ambassadors will help spread awareness.

The Stroke Association announced its new volunteer role filled by five young people aged 17 and 18 years who can share their personal experiences. Elizabeth, who had a stroke aged 14, said: “Doctors thought I was having a ‘teen migraine’ so I want to raise awareness of the fact children can have strokes.” 
Elizabeth Kiss
Elizabeth, a Young Stroke Ambassador
By spreading the word with GP networks and more, the volunteers are keen to make a difference. The three volunteers at the event explained emotional and physical challenges, such as struggling with fatigue, which has resulted in being called lazy, and needing support at school. “Being an ambassador is about getting the word out,” said Emily.

2. Conversations and stories can help children and families.

Sarah Rudebeck, Clinical Psychologist, Evelina London hospital, spoke on how stroke can be a difficult and life-changing event, explaining that as well as the physical changes there can be psychological changes. She discussed how parents and siblings can experience their own emotional reactions to stroke. Sarah said: “Conversations and storytelling can be a helpful tool to help families talk together about stroke and it impacts.” Sarah explained the benefits of using books as a way to introduce the idea of difference and how it’s important for school-aged children to have a simple understanding of their medical condition so they have a way of explaining to others. An engaging story book about difference was Odd dog out. Sarah also explained how she had used The Children’s Trust’s book Head's up, Tim Tron, about a robot’s experience of brain injury, as a template for a seven-year-old child to write his own book about his stroke affecting him. “This helped him talk back everything that had happened, and sequences, in a safe way,” said Sarah. The benefits of making an ‘All about me’ book with a younger child were explained. This is similar to the book children make when they start with a new teacher but the child would also include their stroke and how it affects them. For teenagers Sarah suggested making a ‘Tree of life’, and explained the benefits of this as individual therapy or be done as a group. This piece of work is based around the young person as the tree and may cover all their connections and resilience.

3. Support isn’t always obvious – but can be life-changing.

The work of portage teams was explained by Faziha Zed, portage worker, Lewisham Portage Service, a local authority service. Faziha said: “A key principle is partnership with parents. We think holistically about the child, learning through play and considering social, emotional and communication, for example.” The team organise regular home visits and group activities, both targeted and more general. A mum, whose child had two strokes as a baby, explained how important portage was for in terms of help and having a contact to talk to.
Faziha portage Lewisham
Faziha speaking about portage
The Stroke Association’s Barbara Reissner, Childhood Stroke Support Manager, explained that while some councils don’t have a portage service, key workers can help with some of the things that a portage worker does, such as liaising with professionals, helping to get an EHCP. Other support includes that of the Stroke Association, The Children’s Trust’s Brain Injury Community Service, the Facebook parent support groups ‘My child had a stroke’ and ‘Childhood brain injury support group’.

4. There are solutions to sleep problems.

Rebecca Martyn, lead clinical psychologist in the sleep medicine team at Evelina London hospital, spoken on the consequences of sleep deprivation, and how it can affect school, learning, family relationships, mood and performance. Rebecca explained that common concerns to parents include children taking longer to fall asleep, being too sleepy in the day and not staying asleep in the night. Tips included how a child who is not sleepy in the day may just have a lower sleep requirement, and how a fussy eater’s sleep may be affected by not eating enough iron. Rebecca explained how children may have a sleep study, with various sensors checking if it’s the physical body that’s causing the sleep issue. And using a sleeping watch, like a fancy fitness tracker. Tips included the fact you get an hour’s extra sleep if you leave your mobile outside your bedroom, sleep scheduling, having a lightbox in the morning, and getting outdoors before bedtime.

5. Small things can make a big difference.

As parents spoke about specific challenges for their children, professionals and parents shared easy tips that could make instructions simpler. Dr Lorna Wales, research lead at The Children’s Trust with a background in occupational therapy, said: “If your child finds it hard to remember lots of things put them down on a whiteboard. Then the only thing they need to remember is to ‘check the whiteboard’.
Stroke Association Lorna Wales
Lorna sharing tips
“When we’re talking we can use simple language that we repeat. The steps for a certain task in the daily routine can be learned through repeating and reinforcing. So the child learns that ‘are you ready for a shower?’ means remembering shampoo, shower gel and a towel, for example. One mum mentioned her child found it hard to find the fridge. Lorna said: “You don’t need to label the whole kitchen, which could be confusing. Put a sticker (maybe a dot in a favourite colour or a character) on the fridge if that’s the main place they need to know.”   By the end the day it seemed clear that awareness of childhood stroke is ever-increasing. The Stroke Association launched a stroke advert earlier in the year featuring seven-year-old Max and the day ended with Kat, in her early 30s, talking about having two strokes, one as a baby and one aged six. Kat explained how for her, at school in the 1990s, SENCOS didn’t exist and she was not treated any differently despite problems including having no feeling on her right side. Now a teacher, Kat explained how she had to learn everything for herself, which probably made her more independent. She advised parents: “Let your children ask questions to professionals too. It will help them.”
Stroke Association stands
Over the coming weeks we will feature personal experiences of stroke – from a parent’s perspective and from teenager Elizabeth, five years after her stroke.  
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