Ruben has just turned
nine and is just gorgeous. I'll get the medical stuff out of the way first. He
has severe cerebral palsy that affects all 4 of his limbs and has limited independent
controlled movement. He is floppy, but also can be stiff. He uses his left hand
well for holding toys, switch use, touch etc. Ruben has no useful vision at all.
Ruben has uncontrolled epilepsy despite taking numerous medications morning and
night and being on the ketogenic diet (for the past 5 years). He has small jump
like seizures that don't interfere with his life, and a few larger seizures a
day. Although these don't require any intervention and self-resolve, they can
make him vomit or be tired after. His emergency protocol is rectal paraldehyde
- Very rarely used. Ruben is mixed fed (part through the gastrostomy and small
oral meals). He drinks well. He wears pads for continence and is fully dependent
for all his care needs. Despite all these physical and sensory challenges, Ruben
is bright with good understanding of the world around him. He is non-verbal but
very vocal and clearly indicates yes and no. He uses a communication book and
a computerised communication aid accessed by auditory scanning with 2 switches.
His communication programme is managed by the ACE centre in Oxford. Ruben has
weekly-fortnightly physiotherapy at the Bobath centre, and daily stretches at
home according to their guided programme. He goes to a local school run by the
RNIB and is in year 4. He loves it and is making good progress developing his
literacy and numeracy skills. He says that swimming is his favourite lesson.
Lily
is 6 years old, 7 in June and is extremely bright. She is an exceptional reader
and tends to always have her head in a book. She is communicative, loving and
can be sensitive. She can also be a bit of a daydreamer. She goes to a local private
school and is in year 2. She adores school and is excelling in the classroom,
and also in 'cello which she started to learn last term. Although a middle child,
Lily often feels like the eldest and values having special time with the adults
in the house.
Isabel is 4 years old, 5 in April. She joined the reception
class in September 2007 at the same school as Lily. She is confident, creative
and is more reticent in her communication than Lily. Isabel is loving learning
to read, and like Lily, is very tactile and loves hugs and kisses. She loves to
'help' adults around the house and likes being 'grown up'.
The girls are very
close with each other, play really well together, but do have their competitive
moments too. They are both fiercely protective of Ruben but at times struggle
with sad feelings when he is unwell or can't join in their games in the way they
would like. Lily is a good communicator with Ruben and enjoys using his communication
book with him. Ruben loves swimming,
reading, going on the trampoline, the theatre, roller coasters, sailing, doing
stretches, bowling, painting, talking with his communicator and traveling. He
has a good sense of humour, and is particularly keen on 'knock knock' jokes and
jokes involving bogies and poo!
Lily loves to read, go on the trampoline,
play board games, go to gym club, go on holiday, cook, go to the cinema, play
with Dixie the rat, sew and take photographs.
Isabel loves to play with her
leap pad, go on the trampoline, pretend to be the little mermaid or Harry Potter,
play with Polly Pocket, travel, go on her bicycle, read books, do jigsaws, do
ballet and cook. We are an informal,
relaxed family despite the fact that sometimes we face stresses with Ruben. We
try very hard to have an active family life and are dependent on good skilled
childcare to be able to do that. We particularly love to travel and have had some
very adventurous trips, including to South Africa, the pacific coast of Mexico
and to the US. There is a trip to US booked this summer. We are extremely grateful
for the commitment shown by the childcarers who have worked as part of our team
and respect their space and need for a life outside of work. We actively encourage
this and would welcome an independent nanny who is excited by the prospect of
our challenging yet fun and rewarding job. We will provide good training and support
for the motivated person who is keen to learn. They will be a valued member of
our family and our team. We
would like our nanny to be confident working with children with physical disability
and who are non-verbal. They need to be comfortable with the child in their care
having periods of ill health. They need to have experience of working with a child
with special needs and at least 1 sibling. They need to be good at juggling and
being able to manage divided attention. We are happy to offer comprehensive training
in use of feed pump, special diet preparation, physio, AAC, visual impairment. A
typical day involves: 7- 8.30am - breakfast and getting the children ready for
school. Ruben gets picked up by school bus and girls generally get lift with mum.
Nanny to complete necessary nursery duties according to own planned schedule
and then free until:
3.30pm - Greet Ruben when arrives home from school on
the bus. Chat about the day with communication book or AAC, drink, physio,play
(reading, trampoline, games,craft,messy play,music, toys, out locally etc).
4
- 4.30pm - Girls home and they join in activities after reading or homework.
5.30pm
ish - Supper for all (prepared by nanny earlier in the day or from 5pm ish).
6.30pm
- Mum or dad give Ruben medicines and then bath routine as a team (nanny and parent)
7 - 7.15pm - Bed |
