When Ben was around 12 months old, his parents became concerned that he was not achieving his developmental milestones and he was referred to a paediatrician and NHS paediatric therapists. Ben was found to have hypotonia (low muscle tone which presents as floppiness) and delayed development. Ben was referred to the genetics team to investigate the cause of his hypotonia. Ben had a series of non-febrile seizures in May 2019, and he underwent investigations including a brain MRI scan and an EEG and continues under the care of a neurologist and a paediatrician.
Child and family assessment
Ben was 16 months old when he came to Pace for an assessment. His parents’ main concerns were Ben’s delayed development, particularly his physical skills, communication and learning. They had recently had an NHS speech and language assessment and were worried that the assessment had highlighted severe delay in his communication.
Ben’ parents were looking for more consistent and frequent therapy input. They were looking for a place to support their own activities at home to help Ben develop.
Ben was assessed by several members of the Child and Family team at Pace including a physiotherapist, speech and language therapist and occupational therapist. The family
were given time to fully discuss their concerns. On assessment, Ben was a happy boy who was keen to engage with new people and the environment. Ben was able to roll and moved around the room using commando crawling (moving himself forward whilst on his tummy).
Ben was able to sit but could not keep his balance when reaching for toys. Ben used eye contact and body movement to indicate he wanted more of an activity.
What were Ben’s challenges?
Ben had delayed physical skills; the hypotonia and hypermobility (increased joint movement) meant that moving up against gravity into positions such as crawling and standing was very effortful. Ben had difficulties moving between positions, e.g. lying to sitting, and this limited his ability to play and explore his environment. Ben had delayed play skills – shown by his tendency to bring his head down to explore toys with his mouth rather than use his hands. Ben had limited ability to hold and manipulate toys and showed immature hand grips. Ben had limited abilities to communicate with his family, he was able
to use eye gaze to direct his parents to something that he wanted but
was not using any words or signs consistently.
The findings of the assessment were discussed with the family and
initial goals were set with the family which included:
• Learning to crawl
• Developing understanding of cause and effect e.g. pressing a switch to activate a toy
• Developing his communication i.e. asking for ‘more’ of something motivating
Child and Family intervention – how did Pace help Ben and his Family?
Early, intensive direct sessions: Ben was able to immediately start attending twice weekly transdisciplinary therapy sessions at Pace. This immediacy and intensity is always absolutely critical to make the most of each child’s window of early neuroplasticity. The
opportunities for changes in brain development are greatest at a younger age when neuroplasticity (the brain’s ability to reorganise itself by forming new neural connections) is at its highest.
These regular sessions mean that the therapists could be highly responsive to Ben’s small steps of progress and could optimise the therapy sessions and advice to the family. This accelerated his skill development. Based on the developing neuroscientific evidence, this
early motor experience is important in providing a solid grounding for cognitive development.
The frequency of the sessions meant that Ben was able to develop strong, trusting relationships with the therapists. This allows him to be more confident to attempt new challenges such as moving up into standing and taking steps.
Specialist and expert: The therapists involved with Ben have a significant amount of experience spanning physiotherapy, occupational therapy and speech & language therapy and have a range of further paediatric specialisms, including Bobath,
Sensory Integration, Makaton signing and augmented alternative
Ben was able to trial a Bugzi chair which is an early powered wheelchair. Independent upright mobility is important in developing spatial awareness and concepts. Pace is a regional hub for training young children on Bugzi chairs.
Ben attended an appointment at the Pace hand clinic, run by a specialist paediatric occupational therapist, to assess Ben’s abilities to use his hands and provide splints to improve his hand function.
Play-based transdisciplinary practice: Ben’s sessions kept ‘play’ at the centre of his therapy using a child-led approach. A child’s learning will always be greatest when he/she is most engaged and self-motivated.
Pace has a large selection of toys, activities and equipment which were used to make Ben’ sessions exciting and provide varied opportunities for learning. These play-based techniques are ideal for parents to carry on at home, creating an intensity of intervention that would be hard to achieve in any other way.
Real life stories
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