A transforming OT appointment
In early 2019 I took my youngest son, who was two at the time, for a gait assessment and physical therapy review after a respiratory specialist expressed a concern about a possible scoliosis. After two years of severe reflux, recurrent croup, and three bouts of pneumonia we were keen to explore all avenues as to why this was happening.
The physio indicated hypermobility and a postural scoliosis, which were very happy to hear – it would eventually correct itself, and with orthotics and exercises he would be well placed to build muscle and strength, and support his ankles.
At the appointment many of the questions seemed more relevant to my older child, then seven, who had an existing diagnosis of hypermobility, had orthotics, but who still seemed to have some issues with function in daily tasks and schooling. The physio suggested an occupational therapy (OT) referral and explained the advice they could potentially offer to him.
As the appointment was for my other child, we had no avenue into OT, and so we were able to self-refer (we live in North Yorkshire). The waiting list was long, and we had almost forgotten about the appointment which was again delayed by COVID-19. In September of 2020, with him approaching his ninth birthday, we finally received an appointment.
The appointment was a thorough review of any concerns, and at this point, much later than the initial concern, all of our focus was on school. We were beginning to question if ADHD, and potentially orthostatic intolerance were issues, as memory, concentration, and understanding were all being affected. Anxiety was at an all-time high, which of course was lamented by almost six months off school, and stamina was one of our big concerns. Stamina with writing, sitting, concentrating in any test environment, even eating lunch.
Have you met Ezra yet?
Written by Dr Louise Lightfoot for EDS UK , Ezra's extraordinary stripes is a wonderful story about Ezra coming to terms with being different. Ezra lives with a rare genetic condition called Ehlers-Danlos syndrome and he is fed up with being different, living with constant pain and fatigue.Buy the book
The OT sat him at a desk and asked him to write and to follow a book of shapes, drawing out each example, watching his wrist and finger movements. Almost immediately he broke the pencil nib. She identified that his grip and motor control were hyperextending, and so he was using so much pressure that he could not maintain the grip. This was making him lean over, hunch, and increasing pain in the hand. He was then fidgeting and moving in his seat. The impact on posture and his body, she explained, was increasing fatigue and pain, and was impacting on his neck and shoulders.
A wedge pillow was introduced for him to sit on, a sloped writing desk, and a rocket shaped pen which he thought was just great! Immediately his posture changed. His writing was bigger and more untidy. She explained it would take around 28 days to see a change in that as he became more used to the change in pen shape and grip. A specific type of knife and fork were recommended as his hypermobile core meant he was struggling to cut anything effectively, and he was using so much more effort than was needed and getting stressed very easily.
A letter was received within a week which was written to the school, and a copy for home. The recommended adaptations were to be provided by the SENDCO, and there were recommendations for us at home to buy the products for eating and doing homework. We have struggled so much previously with school who would not let him drink in class, moved him to the back, and did not let him bring a chunky pencil from home to help when he said his hands hurt. I was so worried they would not implement the changes, but the very next day he had everything provided to him.
He is so happy at school now and comes out smiling every, single, day. I am so pleased that we went and that simple adaptations could have such a huge impact on the long term and his daily and future life.