A personal experience of education after stroke

By Katherine Buckeridge (Specialist Speech and Language Therapist in Paediatric Neurology) and Jessica Cannons (Childhood Stroke Survivor)

Childhood Stroke
When you hear the word stroke, the image of an older person will likely come to mind rather than a child or young person. There is much less awareness of childhood stroke and how this can affect a child’s development, yet according to the Stroke Association there are around 400 children per year in the UK who have a stroke. A stroke occurs when the blood supply to part of the brain is cut off resulting in difficulties with motor and cognitive functions. A child may have a hemiplegia (weakness on one side of the body) affecting walking, arm and hand movement. Communication difficulties and fatigue are common problems making school and social life challenging. 

What is aphasia?
In most people the left hemisphere of the brain is responsible for language processing. Damage to this area can affect spoken, written and nonverbal language functions. The broad term of aphasia is used to describe these difficulties. Aphasia may affect a child’s receptive language, expressive language or both. There can be significant variation in the extent of impairments, for example, some children may not be able to speak at all while others may experience only occasional word-finding difficulties.The severity and nature of the aphasia can change over time, posing a particular challenge for speech and language therapists who work with children following stroke. In the early days we may need to consider Augmentative and Alternative Communication (AAC) such as photo or symbol charts, communication books and technology in the form of voice output communication aids (VOCAs). As recovery continues, a child’s goals might be to improve their articulation, take part in conversations with friends or remember topic vocabulary. A few children will need to use AAC in the long term.

A personal experience of education after stroke
Jessica had a stroke when she was ten years old due to dilated Cardiomyopathy caused by a high dosage of a chemotherapy drug during cancer treatment. After a period of rehabilitation in hospital and home, she returned to school. She describes how aphasia affected her education.

“I was home-schooled a lot of the time due to health issues and my aphasia. It took two full years to transfer back into my mainstream school. I missed school, and I was very determined to make it in occasionally when I had the energy. There were a few meetings with the school but the most important one was when Katherine (my speech and language therapist) explained how to support a child with aphasia to return to school and gave a presentation to all the school staff who were involved with my education. At my request I helped to prepare and deliver this with her.”

Returning to school
“I attended middle school occasionally for a maximum of two hours, with my local council tutor. At first, I could only say a few words and then later a simple sentence slowly because word finding was extremely hard. When I knew the answer during the lesson, I would tell my tutor and for a while she would say it aloud in front of the class for me. Afterwards, I was mentally exhausted and went back home to rest. Before my stroke I loved reading, and although my skills were really affected by aphasia, I wasn’t going to let that stop me from learning once more. So, I started with baby books and my reading improved over time. Writing in a lesson was very hard: even just a simple sentence. Getting the words in my head out onto paper was hard. Maintaining and making friends was not an option for me then, as I experienced overwhelming fatigue, and my aphasia was a big challenge for me. All of this gave me the strength and the determination to overcome my aphasia.”

Secondary education
“In secondary school, my aphasia improved a lot. I could verbally communicate a few sentences at a time and later I could write a simple short paragraph and participate in a conversation. I attended up to four hours if I was well and had the energy, and then go home to rest. I always had the support of a learning support assistant in class, one-to-one support with homework and catching up. They would write down everything my teacher taught us in case it was too much information, or I was tired. Also, they helped me get words out of my head onto paper. My base was Curriculum Support and my SENCo reduced the number of subjects I did to English, maths, and science. English and group work were extremely hard, but l always loved a challenge. My reading skills improved dramatically, and five years after my stroke I could slowly read age-level books. I still struggled with maintaining and making friends. Most teenage girls like to be in groups, and I found it difficult to keep up with fast-paced conversations however I made one school friend.”

Exam success
“During exams, the education board allowed me to have extra time, additional help with reading and writing, and breaks. When I got my GCSE results, I was astonished to achieve an A for English, B for Double Science and C+ for Maths. All of the work with my speech and language therapist and at school, home and hospital, resulted in incredible grades so I could make it to college. In college, I did three BTEC courses and made a few more friends. My speech and language therapist stayed involved and, although my aphasia had improved significantly, I still struggled with mental fatigue which was manageable if I planned my college morning effectively. I was so proud of myself when I got my BTEC results:  I got a Distinction Star on all of them! Now, most people would not know that I have aphasia but if I’m tired or anxious it does show and it is still a challenge.”

Our top tips

• Aphasia is an acquired language disorder affecting children who have usually experienced a period of typical language development. This differs from a developmental language disorder (DLD). It can be very frustrating for a child when they are not able to understand and/or express themselves as easily as before, leading to reduced self-confidence. Allow them plenty of time to process information and give their views, supporting them if needed with Augmentative and Alternative Communication (AAC).
• It is not just expressive language skills that are affected, receptive abilities, reading, writing and numerical skills may also show deficiencies. These areas may need specialist assessment to ensure that a child is provided with the additional support and personalised strategies they need to access lessons and homework.
• Fatigue can be a long-term problem following stroke and coping with schoolwork, homework and any social activities can be exhausting. Work with the child, family and health professionals to develop a return-to-school plan and review this at regular intervals.
• A child may not always recover their language skills completely following stroke, resulting in an ongoing impact on friendships, educational attainments and work prospects. However, by not assuming there is an intellectual disability and supporting children with aphasia more effectively in the long term, they can go on to lead successful and fulfilling lives as adults.
   

Useful links
More information about Childhood Stroke can be found on the Stoke Association website
where there is also a link to Jessica’s story:
https://www.stroke.org.uk/childhood-stroke/i-am-young-person/jess-story

Katherine and Jessica have made a podcast with the Royal College of Speech and Language Therapists on Paediatric Stroke and Childhood Acquired Brain Injury
https://soundcloud.com/rcslt/paediatric-stroke-childhood-brain-injury-a-patient-and-therapist-perspective

This book by Sue Walker and Beth Wicks contains a wealth of useful information:
Educating Children and Young People with Acquired Brain Injury, second edition published 2018 by Routledge

ABI mini guide for schools available from the Child Brain Injury Trust ABI-Mini-Guide.pdf (childbraininjurytrust.org.uk)

Communication Access UK is an initiative developed in partnership by charities and organisations that share a vision to improve the lives of people with communication difficulties. https://communication-access.co.uk