Sarah’s Story
Sense Children’s Specialist Services
Getting a Result Project
Sarah is currently in the process of applying for a post-16 residential college.
Her transition story is one of success after experiencing challenges to secure
the correct support early on in her life.
Sarah has CHARGE Syndrome, one of the most complex conditions we know.
It is now recognised as a major cause of deafblindness, having first been
identified in 1979. There are many characteristics associated with CHARGE,
including coloboma, sensori-neural hearing loss and balance problems.
A young person with CHARGE can exhibit any combination of the
characteristics alongside many other anomalies associated with
the condition (to date, around 40 have been identified). As
a result, people are likely to experience hearing and vision
difficulties alongside problems with the senses of balance,
touch, smell, pain, pressure and temperature.
When Sarah was young she attended several playgroups which did
not meet her needs so well. She was introduced to nursery very gradually; at
first only attending for an hour and working her way up to attending for the
full session. Eventually, Sarah settled in a nursery where her Mum was asked to
take her in an hour before any other children arrived, and collect her an hour
before other parents.
Sarah’s mum initially had to negotiate to get the correct support for Sarah
in school and, when she entered a mainstream primary, she was still very
hyperactive. Sarah’s mum said that “the teachers and support staff did not
know what to do with her”. She was “a child with a visual impairment and a
hearing impairment”, but there was no diagnosis at a young age.
During her time at primary school, Sarah was diagnosed with ADHD,
Tourette syndrome and mild ASD. She was not diagnosed with CHARGE
1
Supporting
Young People
into Adulthood
Syndrome until 2009, when she was around 10 years old. Despite being
recognised in 1979, CHARGE only became an official syndrome in 2004 –
and it is still not widely recognised.
For her secondary education, Sarah studied at a community special school,
where the smaller classes and daily structure really made a difference to
her learning. This enabled Sarah to predict and anticipate the next step in
her routine. Sarah still studies here and it has been important for her to be
able to build positive relationships with the staff, who have been consistent
throughout her secondary school career.
For Sarah, it has been important to have a gradual transition process
in place, meaning that nothing is left until the last minute. Children and
young people with CHARGE can find transitions particularly stressful and
require support to manage this. Sarah has been constantly and
consistently included and informed of what is happening, and has
been directly involved in her multidisciplinary transition meetings.
These have been specifically tailored to include Sarah, making use
of colourful mind-maps to help the decision making process.
Multi-agency working has been essential for a successful transition. Forming
good professional relationships with other agencies is imperative, along with
providing excellent support to young people and their families. Sarah’s mum
mentioned that it has been particularly helpful to have funding for post-16
provision explained to her.
For Sarah, decision-making can be quite difficult, particularly since she is easily
influenced by those around her. She likes to write lists of the pros and cons
of each option and requires the space and time to do this. As part of Sarah’s
transition, she was presented with several options for post-16 provision and
she explains “It was confusing… I had too much to think about”. If anything,
Sarah suggested that she has been given too many options.
Sarah’s mum suggested that it would have been
useful to discuss possible college options with her,
before presenting a maximum of three to Sarah
herself; thus limiting the confusion. Non-biased
viewpoints would have better allowed Sarah to
come to her own decision about which college
to apply for.
2
Sarah has now chosen which post-16 provision she would like
to attend and will soon take part in an assessment week at
college. “I’m feeling quite scared but I’m excited”. Sarah
is apprehensive but this is more about moving away from
home than the study itself. It is important that she is
supported to access any social opportunities to increase
her confidence. Sarah would also benefit from support
from a communicator-guide (a support worker who has
received additional training in supporting young people
with MSI) whilst at college.
It is imperative that Sarah receives the correct support at college, and for this,
her tutors must be familiar with CHARGE Syndrome. People need to be made
aware of CHARGE and its associated complications, so that the correct support
for young people living with the syndrome can be provided.
Sarah is looking forward to taking part in a
course tailored to her needs. “I’d like to work
with children with difficulties… I’ve looked
at Childcare courses”. She also has ambitions
to travel the world. “I want to go to Japan”.
It is important that Sarah takes her course
year-by-year and plans her more immediate
future rather than looking several years ahead.
Moving to college will fulfil at least one of
Sarah’s ambitions; to live more independently,
supported by professionals who understand her needs.
Sarah’s story is a success. She has been supported well through secondary
school and is now able to move on to further education to complete her
studies. The practitioners involved working well together has gone some way
to support this, and a gradual transition process has, for Sarah, provided time
to think and determine what is best for her.
3
Supported by
About Sense
Sense is the leading national
charity that supports and
campaigns for multi-sensory
impaired (MSI) children and
adults. We provide expert advice
and information as well as
specialist services to MSI people,
their families, carers and the
professionals who work with them.
In addition we support people
who have sensory impairments
with additional disabilities.
101 Pentonville Road, N1 9LG
Tel: 0300 3309 250
Fax: 0300 3309 251
Text: 0300 3309 252
email: [email protected]
web: www.sense.org.uk
Registered charity number: 289868