Hello, I’m Pauline mum
to twins Tommy and Matthew;
we live in Hockley, Essex.
Tommy and Matthew were born
14 weeks premature on 18th September 1995 weighing 2lb7 and
2lb8 respectively; as a result they both suffer from a number of
disabilities between them.
Tommy has
Cerebral Palsy which affects his ability to walk and maintain his
balance; he also has a number of minor learning difficulties
particularly relating to his concentration span. He has had hearing
problems, breathing difficulties and up to 18 months ago he suffered
with non epileptic seizures connected to fever (febrile convulsions), I
hope he has now outgrown these seizures and he has been fortunate not to
be confirmed as Epileptic.
Matthew
also has Cerebral Palsy which affects both his legs and his right arm;
he is unable to weight bear or walk and relies on his powered wheelchair
for his mobility needs. The limited use he has in his right arm and hand
also affect his mobility. He has limited hand to eye co-ordination and
his fine motor skills are very weak hence he cannot write, but uses his
computer well to learn both at school and home. He has moderate learning
difficulties and is slow to grasp new tasks and information. Matthew
also suffers from Epilepsy and is on daily medication to control his
seizures – unfortunately this cannot control the absence episodes that
he has. Also as a result of his premature birth Matthew suffered from
Hydrocephalus which at just 5 weeks of age and weighing only 3lb
necessitated him to undergo major neurosurgery to fit a VP Shunt – to
date we have had no problems with this (touch wood).
What have we been through?
Seems like
hell and you feel that you will never come through it but you do each
step at a time - I don’t know how but you manage. The initial shock of
the premature birth and all the health issues, complications and life
threatening scenarios faced each day at the early stages of life are
only the beginning of a long long road to meeting the daily needs of
bringing up a disabled child or two! in today’s society.
Health
From day 1 – resuscitation, ventilators, blood transfusions,
jaundice, needles, nasogastric feeding tubes, oxygen dependency, tests,
investigations, hernia operations, lumbar punctures, neurosurgery,
adenoids removed, tonsils removed, Grommets fitted, seizures, MRSA, hand
foot and mouth disease, botox injections, legs plastered.
Not too
mention the numerous medications administered and endless Hospital
appointments we have attended (and still attend) for paediatrics,
orthopaedics, eye clinics, hearing clinics, speech therapy, ENT,
physiotherapy, neurology, dieticians, orthodontists and A&E, Hospitals
are like our second home!
Equipment – Kaye benches, Kaye Walker, Meywalker, splints, Pedro’s,
Leckey standing frame, manual wheelchairs, powered wheelchairs, Jenx
chair, Maclaren major buggy, electric portable hoist, shower chair,
urine bottles, syringes, handrails
Our Home
Now – FANTASTIC
but a big challenge and a big price!
I purchased
a bungalow in December 2000 that had the potential to extend and adapt.
When I first started looking at the adaptation I wasn’t just doing it
for Matthew in his wheelchair but I looked at the whole picture and what
all three of us needed now and in the future, after all it’s not
something you can redo each year so it is important to consider
everything.
I
established what we needed and in May 2001 approached the local council
for a Disabled Facilities Grant (DFG) eventually approved in October
2003. Building work started in December 2003 and completed in October
2004 when we moved back in.
The
Bungalow was as good as rebuilt; I had used some novel ideas to create
large rooms with good access and quality fittings throughout. I applied
only one of the basic principles that the social services OT had advised
and that was maintaining a 1.5M turning circle for the wheelchair other
than this I used my initiative and understanding of how I and the boys
wanted to achieve a good quality of life. We have sliding doors that
slide into the wall, under floor heating, halogen lighting controlled on
dimmers and our ‘wet room’ bathroom has a large walk in shower, a Clos-o-mat
WC with a height adjustable support arm (to accommodate Matthew as he
grows) and an Air bath which provides therapeutic
hydrotherapy.
Unfortunately as
Matthew continues to grow so does his powered chair, standing frame
and walker. Manoeuvring around the house has almost become
impossible and once again Matthew is losing his independence.
We are now looking at
the possibility of moving to a larger property but have already
discovered that it is very unlikely that we will find a property
that has already been fitted with adaptations suitable for our
needs. My greatest fear is that we will have to go back to
square one for a while.
Can you help us?
Our Garden
For the
grown ups and the children, Tommy and Matthew both love to play outside
and I enjoy being outside so the garden was a necessity for me and their
development, so we now have 2 areas of decking linked by a soft rubber
play surface with a central area of grass, lots of play equipment has
been included from Tree house and Sandpit to swimming pool (above ground
but heated) and a trampoline. Playing is safe and can be easily achieved
by both and I can enjoy it too.
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