Adam’s story
From a twin birth story to a premature only baby, Adam had brain oxygen starvation with resultant cerebral palsy . Adam’s parents, Jodie and Rick were devastated and delighted in a mix of emotions as they were grieving a lost twin/ miscarriage and receiving the news of their living baby’s possible diagnosis. In the first instant Adam needed NICU care and Jodie received training on how to nasogastric tube feed.
Jodie spoke with a team member at Time Norfolk Charity on her loss of one twin and to acknowledge the fear of her living baby’s health difficulties. She continued to receive counselling.
From 4 weeks, Adam needed assistance for lactose intolerance with infant medication, hydrolysed formula and gradually learned to feed orally with the assistance of an infant feeding team nurse.
As paediatric assessments continued over the next six months, it became clearer to Jodie and Rick that Adam required a team for mobility (physiotherapy and orthopaedic shoes), loss of sight ( optician at12 months for glasses), delayed motor and sensory skills for learning started with Portage services, attended weekly “Little discoverers” for music, movement, then Conductive Education for motor skills.
At 2 years a speech and language therapist from Action Community Enterprise (ACE) centre was assigned for assessment by health service but took another 4 months before action was taken to develop exercises to improve his speech delay.
Jodie claimed Disability Living Allowance for Adam when he was 12 months and realised that his glasses prescription and Paedro boots would have to be self funded. Gradually Jodie returned to two half days work to fund the essential extras for Adam and Jodie’s sister offered to look after Adam.
Jodie’s family more generally retracted from caring for Adam as they considered his needs too complex to care for and they expressed fear that they couldn’t administer medications adequately. Often Jodie felt abandoned, inadequate and lonely becoming sole carer for Adam and not having friends to help look after Adam (other than those who also had children with disability) she contacted Gingerbread, a charity which supports communication online and ideas for respite care, and Kinship carers to find other families who wanted to help.
Adam’s partial sight and neurological delay made nursery attendance stressful as he frequently found walking difficult, tasks unmanageable and fatigue became frustration. Jodie found SENDIASS helped her understand SEN Support and how an Education Health and Care Plans (EHCP) would be needed for Adam continuing pre-school and starting mainstream school.
Adam loved wheels and balls, so finding a tricycle he could ride which didn’t wobble over through Whizz Kids meant he could develop his leg strength and balance and progress to a self propelling wheelchair which he adapted for playing football.