#See the hidden me: How lockdown revealed hidden abilities in a child with maximum severity disability from HIE resulting in cerebral palsy

This Action for Brain Injury Week, charities, campaigners and other supporters of people with acquired brain injury (ABI) are raising awareness of the hidden challenges that come with the condition, and inviting us to #SeeTheHiddenMe. It is well known for those with apparently milder disability, the difficulty in being seen, being known and being understood add frustration and insult to their injury. 

The more profound the physical injury, the harder it becomes to know for sure what is lost, trapped or undeveloped. Impaired movement, sensory abilities, or speech, language and expression not only hamper a child’s cognitive development but make it difficult to test and bring out the deeply hidden potential that’s there.

As specialists in cerebral palsy and neonatal brain injury claims, we aim to equip each child with the level of care, resources and environment that will optimise their ability to learn, participate and live a life which gives them fulfilment. The ability to see the child’s hidden potential, so that it can be accessed and developed, is a key part of the assessment and compensation process.

Developmental leaps in lockdown

During lockdown, we were pleased to see the developmental leap made by some of our child clients with cerebral palsy. The most striking example was that of a child who is severely disabled with physical impairments assessed at level 5 on the Gross Motor Function Classification System (GMFCS) which scores the severity of an individual’s physical disability. The child is gastrostomy-fed and without speech.  The child’s ability to demonstrate an understanding of cause and effect was intermittent at best.  However, whilst locked down at home with intensive encouragement from devoted parents, focussed therapeutic intervention and special educational support funded by interim payments, there was significant progress well beyond that anticipated as possible by the child’s school. The child went from previously having no consistent interaction, to demonstrating reliable decision-making via yes/no responses and eye gaze selection. This included using eye gaze technology to play video games, such as Bursting the Bubble, requiring skills in tracking, identification and making a conscious decision to see an effect.

Despite ongoing assessments from NHS medical professionals, specialist medical experts and educational specialists the extent of this child’s ability to learn, communicate/interact and develop reliable simple decision-making skills had been hidden. These had now been revealed as a fortunate by-product of lockdown, opening the door to the possibility of significant improvements to the child’s quality of life. The child’s potential for learning, communication, interaction and play could have gone unnoticed by professionals but for the intense attention and input opportunity from family members that lockdown provided and interim compensation-funded specialist one-to-one home-based educational support, assistive technology, therapies and care.

This child’s experience raises important questions about whether traditional assessments of special educational input, even when individualised and privately funded, provide enough input to properly uncover hidden cognitive potential that could make a significant difference to a child’s ability to communicate and interact with others and with assistive technology, and improve their quality of life. We know that a child’s cognitive development can be hampered by physical impairment. If they are not receiving enough personalised, specialist intervention and support to develop their cognitive ability, this reduces their opportunity to interact, further dampening limited expectations of what can be achieved.

Lockdown revealed that for this child, intensive encouraging support from parents who had more faith in the child’s ability than the educational system, along with ample therapies and eye gaze technology resulted in highly rewarding gains.  Our expert educational psychologists reported similar success stories in which severely brain-injured children had made surprising developmental gains from the intensification of home-based, high quality therapy and intervention, and unwavering parental encouragement during lockdown.

These stories are a testament to the parents who refused to give up. They also show that time, love and money spent on optimum care can make a difference to even the most profoundly disabled brain-injured child’s life.

If you are caring for a child with cerebral palsy or neurodevelopmental disability and would like to find out more about making a claim, you can talk to one of our specialist solicitors, free and confidentially, by contacting us here.