Going the extra mile

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Going the extra mile

• Tom

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Aims

• To provide you with insight and an understanding
  of parents emotional journey in response to their
  childs disability
• To uncover ways of empathetically working in
  partnership with parents
• To support you as professionals in a sometimes
  difficult task

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Dont measure success by the setbacks

• Tom would not have had this incredible adventure
  if setbacks were seen as failure

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The Birthday

• Tom was born seven weeks early
• He was ventilated for five days
• He came off then was put back on to ventilation
• He came home at 9 weeks
• This was the start of his incredible adventure

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Right From The Start

• The right support from professionals can
  facilitate the process of adaptation

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Tom

• Oh my God I feel the pain
• My labour- its started off again
• Its far too early - its not my time
• But the doctors say that well be fine
• Emergency caesarean in depth of night
• But still they say well be alright
• A healthy boy I hear them say
• But thatll all change by the end of day
• Intensive care lots of busy alarms
• Tubes and needles in his legs and arms
• Is this my baby? What have I done?
• All my dreams suddenly gone

• The nurse said its the yellow hat
• Would you feel well if you wore that?
• He changed the hat from yellow to blue
• Improvement to baby he couldnt do
• To London we went-they couldnt fix it
• Their words were hard they didnt mix it
• Hes well they said take him home
• Out like a flash we didnt moan
• At home I felt something amiss
• My other kids did better than this
• Back for check ups all is fine
• Are you sure? I said hes always crying

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• I hated the doctors a meeting was set
• An answer for all this I was going to get
• More upset. More tears. More hatred and blame
• More guilt. More sadness. But most of all shame.
• Im finding it hard to write too much more
• But the only thing I know for sure
• Is I wouldnt change Kinley for millions of
  pounds
• Although we still have our ups and downs
• His smile is so precious, his laugh even more
• His strength and his courage knock me to the
  floor
• So hes not what was supposed to be
• But he means the world to me

• Six months later on a sunny afternoon
• The words I dreaded come too soon
• Cerebral palsy go home and cope
• How can I manage? You stupid dope
• Just carry on as normal well be in touch
• For a broken leg Id have been given a crutch!
• No help. No advice. No sympathetic ear
• Just Devastation. Guilt. Upset and Fear
• Tears flowed often night time and daily
• How could this happen to my beautiful baby?
• Physio appointments still very strange
• A whole new set of people so many names
• Children with problems surely mines not that
  bad
• Just look at him hes a wonderful lad

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The Template
Exploring the Principles

• Recognise that how the news is shared may have an
  impact on how the parents bond with and respond
  to their child
• Be aware that how the news is shared may
  influence the future relationships that parents
  will have with professionals

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The Template
Exploring the Principles

• Think about and challenge our attitudes towards
  parents, carers, disabled children and adults
• Understand how our attitudes influence our
  practice and how we communicate

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Uncle Tom Cobley n all

• Soon after his first birthday the professionals
  began to mass on the horizon
• The family had no idea at that time how many
  different people they would have to learn to deal
  with
• Each professional had a different take on the
  situation

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Right From The Start

• Parents have a right to expect
• A service provided by professionals who have
  training in communication skills, sharing the
  news and disability equality
• A service that takes account of their cultural
  background and that is able to provide
  information and support in their first language
• To be treated with respect
• An approach and language that values their child
• Privacy and a suitable environment when the news
  is shared
• To have their concerns respected and responded
  to, particularly if they are the first to notice
  their child has additional needs
• Findings about their child shared sensitively and
  honestly
• Time to reflect on the news, ask questions and
  check understanding of the information given
• Early follow-up support, ideally from and
  identified keyworker
• Support to share the news with other family
  members and friends
• Written information on
• - Their childs condition
• - Statutory and voluntary services
• - Practical and emotional support
• An opportunity to seek other professional
  opinions if they so wish
• A multi-disciplinary assessment and service plan
• An opportunity to comment on the quality of
  service provided

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Doctors
Therapy
Portage
Social Services
Diana Trust
Special Education
All the familys other needs
Scope
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Special needs or just needs?

• Special Needs Nursery
• Had trained staff
• Small groups
• All the right equipment
• Therapy available
• Highly recommended

• Ordinary Nursery
• Large groups
• Staff not familiar with physical impairment
• Very busy
• Not really recommended

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Parents made the sensible decision to try both
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Tom decides

• A term at special needs nursery caused tantrums
  and distress
• The nursery was concentrating on physical skills
  and cause and effect
• His end of term report suggested he was starting
  to appreciate these
• His parents didnt recognise the child in the
  report and sent him to the ordinary nursery where
  he thrived

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3 years old

• Statement of SEN
• Differences of opinion
• Parents convinced he has normal abilities
• Professionals unable to demonstrate this through
  testing

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Outside helpLocal people, family, friends, The
Fire Service, Wish Foundation etc.

• Scope
• Supported the family
• Seating/home adaptations
• Statementing advice
• Educational advice
• Suggesting ways forward
• Providing materials
• Representation at meetings

• The Diana Trust
• Supported the family
• Ongoing healthcare
• Clinical psychologist
• Presenting evidence
• Pressing for creative solutions
• Liaising with school
• Providing training
• Becoming Key Worker

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Do no harm

• Help parents identify and manage problems
• Enable them, including problem anticipation
• Enable the well being and development of children
• Facilitate social support and community
  development
• Enable service support
• Compensate where necessary

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But the support from organisations was nothing
like the other support the family got